Pray for Joseph

Emmanuel

2011-12-18T15:58:00.001-06:00

Recently I read to the girls the story of Jesus' birth via the words of the Jesus Storybook Bible. I love this Bible; it always presents the Word to me in a fresh light and through the innocent eyes of a child. This chapter was relating the appearance of the angel Gabriel to Mary:

There was a young girl who was engaged to a man named Joseph. (Joseph was the great-great-great-great-great grandson of King David). One morning, this girl was minding her own business when, suddenly, a great warrior of light appeared--right there, in her bedroom. He was Gabriel and he was an angel, a special messenger from heaven. When she saw the tall shining man standing there, Mary was frightened. "You don't need to be scared," Gabriel said. "God is very happy with you!" Mary looked around to see if perhaps he was talking to someone else. "Mary," Gabriel said, and he laughed with such gladness that Mary's eyes filled with sudden tears.

"Mary, you're going to have a baby. A little boy. You will call him Jesus. He is God's own Son. He's the One! He's the Rescuer!" The God who flung planets into space and kept them whirling around and around, the God who made the universe with just one word, the one who could do anything at all--was making himself small. And coming down...as a baby.

I was so captured by Mary's reaction in these verses: She was frightened, and when Gabriel said, "God is very happy with you!" she looked around, sure he was speaking to someone else. Why would God be happy with her? What had she done to deserve such praise? Why shouldn't she be terrified of this luminous heavenly being?

I can relate so much to Mary in this interaction, and maybe you can, too? I feel it's easy to see my own faults and keep track of all the ways I don't live up to being the mom, wife, friend, or child of God I ought to be. There are so many things to be and do and I just never seem to have enough energy and patience to do them right. If anyone showed up and said joyfully, "God is very happy with you!" I would think they'd had a little too much egg nog.

But the truth is, God is very happy with me, and if you have believed in Jesus, he is very happy with you. And that is a truth I choose to believe even when I feel it to be untrue. Because of Jesus' perfect life and sacrifical death, his record has now become mine and yours in God's eyes. It's amazing, too good to be true, unfair even! Why would God lower himself to be born in such meager circumstances, not even in a house, but in a barn for animals? Why would he live among us sinners and choose to be rejected and ignored and scorned and ultimately killed like a criminal?

He did it for me and for you. He came to be "Emmanuel," God with us. So we are no longer alone in our failure and sin and shame and loneliness. Even when those things threaten to overtake us, His joyful voice brings light and truth to our lives as he says, "You are accepted. I am happy to call you mine." (John 1:12-13) He can relate to any and all temptations and feelings we experience because his life here on earth was no bed of roses. He often didn't have a place to lay his head. His friends betrayed him and abandoned him. He was not esteemed or valued or given the respect he deserved. He had no beauty or majesty that drew people to him. He was a man of sorrows and familiar with pain (Isaiah 53).

I don't think I could handle it if God was unfamiliar with pain. Just think of a time you were feeling heartbroken or alone and maybe you talked to someone who just didn't "get it." They didn't think you should be so upset, or they were visibly uncomfortable with you being so vulnerable, or they encouraged you to do something to cheer yourself up. Clearly, they thought you needed to get yourself together and cheer up a bit, for everyone's sake. Really helpful, right?

Then consider Jesus. Consider the friend He is to you. He can authentically say, "I know how you feel. I am with you, and I love you." He welcomes us in whatever condition we come and is so happy we have come. He is no longer the God who is far off. He came as a baby so he could be Emmanuel, God with us.

We are moving to Nashville this week and leaving Atlanta, the place where all our children have been born and where the bulk of our "Joseph memories" lie. It is here Joseph learned to walk, made his first friends, discovered "Moe's," and many more essential life lessons. :) We are hopeful and grateful for this new move, but Atlanta has such a special place in our hearts. We have been revisiting places that were special to us as a family and saying "goodbye" again to another chapter in our lives. I don't even understand all we are feeling, but I'm grateful to have a Savior and a friend who does. I've been reminded anew this season that God is not far off in our lowly human states; he came to be with us all those years ago so we could have a God who relates and knows and understands. Hallelujah, what a Savior!

Merry Christmas, and may we all feel God's nearness this season.

Happy Birthday, Joseph

2011-08-19T19:51:00.002-05:00

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We Did It!

2011-05-02T13:34:00.012-05:00

Thanks to all of YOU, we met our goal of $30,000 to give to childhood brain cancer research! In fact, we exceeded our goal by several thousand. Wow! We feel so blessed and are so excited to fund new research!!

The Joe P Rally Run of 2011 was again a freezing cold, cloudy day. But again several hundred of you showed up and volunteered and ran and celebrated Joseph's life. Thank you so much to everyone who came, gave, sponsored, volunteered and supported from afar.

We did a kid's fun run this year, which was wonderful. The faithful Chick Fil-A cow came and can you believe every child beat him? That cow really needs to get in shape. :) It was really fun to have him and added a lot of excitement for the kiddos.

Special thanks to Jennifer Barr and Elaine Kay who really pulled this whole thing off!

Here are some pictures of the special day:

Thank you, thank you, thank you!!! It was a great day and we so appreciate everyone who made it possible!

A very special thanks to our awesome sponsors this year:

e+ Foundation

Morgan Keegan

Waste Management

Advanced Network Solutions

Icon Clinical Research

Chick Fil-A of Brentwood

Brentwood Children's Clinic

Caresafety.com

AD-VANCE

Bass Security

Crossfit of Murfreesboro

Loden Vision

Merridee's

United Healthcare

Brentwood Pediatric Dentistry

Moe's, Brueggers, Dick's Sporting Goods, Starbucks, JC Interiors, Green Fleet Messengers, McDonalds, Big Move Games, Sodium, Snip-its, Learning Express, and Cafe Nonna.

So Grateful!

2011-03-20T14:07:00.006-05:00

We have been so touched lately with all the efforts of our friends and family to make the Joe P. Rally Run a huge success. Thank you to everyone who is spreading the word about the run and to those of you who have set up fundraising pages, given, or signed up to run. If you haven't signed up yet, go here right now! And if you want to cry your eyes out, go here. (Thank you, Lindsay, for this beautiful and tender post.)

Also, a huge thank you to my wonderfully talented sister-in-law, Jennifer Barr, who is working round the clock putting this race together with the help of the Rally Foundation and Elaine Kay, their tireless Nashville director. We appreciate all your hard work so so much!!

A couple of weeks ago I got a message from a friend saying that her child's first grade class at Intown Community School would like to do a service project and their topic was "Sick Children." (This is the school that's a part of our church, and Allen used to teach 5th grade there many moons ago. It is a really wonderful school that encourages a lot of creativity and love of learning. The kids we got to know there seemed to have the exact opposite attitude towards school that most children have. If they had a day off, they would be really SAD because they would MISS school! I used to periodically ask the kids, "So, are you excited for Spring Break, etc.?" just to test them out and they would always answer, "Well, not really because we'll miss school." It is such a fun and lovely school I do think any child would be sad to miss it.)

Anyway, this little first grade class decided that for their service project they would like to form a little fundraising team and have a day at school devoted to Joseph. They asked me to come and answer some questions about Joseph and his cancer, then they made a huge banner, and then they had a mini Joe P. Rally Run in the school parking lot, complete with the Chick-Fil-A cow!

It was one of the sweetest most touching things I have experienced. Seeing these children running their hearts out so they could help other sick children was so precious.

About a week after the race was over a mom and her son came over to me at a pizza place and the little boy asked me, "I remember you from Intown. Aren't you Joe P.'s mom?"

I felt like a celebrity. Why, yes, I am Joe P.'s mom. Everyone can refer to me as that from now on. :)

Thank you, Intown First Grade!! Your creative efforts are really going to make a difference in research towards Childhood Cancer Research.

Twinklings of Joseph

2011-03-03T13:49:00.008-06:00

Every so often (sometimes very often), I'll be going about my day, just doing normal everyday things when I'm struck so hard by a memory of Joseph that I have to take a really deep breath just to keep going. It happens in obvious places, like whenever I drive by our old house or am in that neighborhood where we wore a path with a stroller to and from that park. I drive by and I can just see Joseph and Holly bundled up together in the double jogger and me trying to get there fast enough to let them loose on the ducks!

Sometimes it happens in more unexpected places, like a coffee shop. I was standing in line the other night, trying to figure out which of the 1 million choices of coffee combinations I was going to go with when my eyes fell on a little box of chocolate milk. All of a sudden my eyes teared up and I was back in Memphis with my boy, and we were all sitting around a table, overjoyed that Starbucks chocolate milk was the one thing Joseph would eat when he was feeling sick from the radiation. That little box of chocolate milk was always a treat for him, though, and I can recall countless sleep-deprived mornings with me driving through Starbucks for a coffee and him sitting back there hoping it was a chocolate milk morning, too!

There are so many opportunities to remember him, really. Just some days they strike me harder than others. This little memory I cherish because it was just him and me. I'm thinking Holly was napping and Allen was at work. We were looking out our back door at squirrels, as Joseph was prone to do, and we noticed an animal I was sure he probably hadn't seen before. He asked me what it was and I said, "That's a chipmunk! I don't think you've seen one before. Isn't it cute?" He cocked his head to one side and I could see him running through his mental list of "animals I know," and he came up with, "Das a chicken?" I told him "No, honey, a chip-munk." He looked puzzled again asked, "Das a monkey?" I could tell he was sure mommy had lost her mind, mixing up chickens and monkeys because surely chipmunk wasn't a real word. I always smile when I think of that little conversation.

I'm not really sure this post has point...I just felt like talking about Joseph. I hope you don't mind! I guess with the Joe P. Rally Run coming up, a lot of people have asked about how we're doing and are remembering Joseph especially.

We are really looking forward to this year's race on April 16th. It is going to be in Nashville again, at Centennial Park. There will be a kids' Fun Run at 8:30, so be sure to get there a little early if your kiddos want to race against the Chick-Fil-A cow. We will be there, bright and early, and look forward to seeing lots of you! There will be all kinds of booths set up from local businesses/restaurants and Starbucks has offered to provide the coffee. If you haven't already registered, you can do so here. We are so grateful to all our awesome sponsors who are making this possible, and to Jennifer Barr, who is heading up the race this year. I just know we are going to reach our goal of $30K.

Thanks to all of you who have already supported this race and to those of you who have become fundraisers. It is so exciting to see us getting closer to the goal. I have this little dream that maybe one day a family will get the news that their child has a high-grade brain tumor and instead of no good options, they are told, "Oh, we have a great treatment for that. No big deal!" And they would live to have lots more birthdays and fun discoveries and memories together as a family. Wouldn't that be amazing?

See you all April 16th!!

The Babe, the Son of Mary

2010-12-08T09:36:00.004-06:00

What Child is this who, laid to rest
On Mary's lap is sleeping?
Whom Angels greet with anthems sweet,
While shepherds watch are keeping?

But he was pierced for our transgressions,
he was crushed for our iniquities;
the punishment that brought us peace was on him,
and by his wounds we are healed.

So bring Him incense, gold and myrrh,
Come peasant, king to own Him;
The King of kings salvation brings,
Let loving hearts enthrone Him.

He was despised and rejected by mankind,
a man of suffering, and familiar with pain.
Like one from whom people hide their faces
he was despised, and we held him in low esteem.

Raise, raise a song on high,
The virgin sings her lullaby.
Joy, joy for Christ is born,
The Babe, the Son of Mary.

By oppression and judgment he was taken away.
Yet who of his generation protested?
For he was cut off from the land of the living;
for the transgression of my people he was punished.

He was assigned a grave with the wicked,
and with the rich in his death,
though he had done no violence,
nor was any deceit in his mouth.

Yet it was the LORD’s will to crush him and cause him to suffer,
and though the LORD makes his life an offering for sin,
he will see his offspring and prolong his days,
and the will of the LORD will prosper in his hand.

After he has suffered,
he will see the light of life and be satisfied;
by his knowledge my righteous servant will justify many,
and he will bear their iniquities.

(Isaiah 53 and What Child is This)

I was listening to this song on the radio this morning (What Child is This) and two things struck me: 1. The irony and sadness of the honor Jesus deserved and the honor we actually paid Him and 2. Mary's response as a mother to Jesus' crucifixion (that we don't know much about it).

My baby, June, has been sick the last few weeks with a cold and an ear infection. I've had lots of time to hold her at night and rock her and also to think and pray about her future (after I finally remember in my sleepy state that Allen is working and will not be getting up with her as he usually does!). It's in the moments when my children seem the most innocent and helpless that I sometimes look with fear into the future. I won't be able to protect them forever. Lord, please keep them from pain and suffering and harm.

But, in my heart of hearts I know He won't. Whom of us has been spared any pain or suffering or harm? Whom of us hasn't had our hearts broken, ignored, or "held in low esteem." If we are honest, we all have been hurt and harmed by other people, whether intentional or unintentional. It is the sad state of our hearts. We all have been tainted by sin and we feel the effects of that.

So, once I admit that my children have and will inevitably experience pain and suffering and some degree of hurt I wonder what I should pray next? I can't protect them forever. I couldn't keep Joseph with us forever or keep cancer from ravaging his beautiful life. Just the thought of it is too much to bear.

Where do we go with this unspeakable fear and sadness? As a mother, how do we fearlessly entrust our children to God's hands, knowing full well it won't be a bed of roses? How did Mary accept the beautiful gift of being the mother of God, knowing His life would be full of rejection and pain and that He would be taken from her and crucified on a cross?

I have looked through the Bible and I just can't find much about Mary in Jesus' later life (I am no Bible scholar, so if I'm missing it please let me know) or how she responded to His crucifixion. But I can imagine the intense pain, horror, outrage and anger. This child, this perfect son, whom she nursed and held and raised, treated as a lowly criminal and killed publicly for all to see. With no honor or respect or glory. The King of kings and Lord of lords, her own son.

The only thing I can think of is that she knew He was God's Son first. That yes, He was her son, entrusted to her for a short while, but ultimately His purposes were so vastly beyond just the short while she had Him in her home.

I know it is not really accurate to compare our own children to Jesus, because He is the Savior of the world and our children are not, but I think the idea still applies. That our children are gifts given to us for a short while, but their purposes and lives are God's and He is trustworthy to keep them safe. And not safe as we imagine safe, but safe in His love and safe for eternity in His hands. That Emmanuel, God with us, applies to all of us. Even in loneliness, sadness, and fear, God is with us. In the midst of a sinful, painful, fallen world, the beauty of Jesus can shine into our hearts. He is with us if we confess our need and open our hearts to His forgiveness and grace.
This Christmas season, (and every Christmas season) I find myself distracted by buying gifts, getting to the post office, checking everything off my "to do" list to be "prepared" for the big day. I am not focused on Jesus and I truly feel my heart "is deceitful above all things and beyond cure." But the Good News is that we do have a beautiful Savior who sacrificed for us and lived a perfect life in our place (by his knowledge my righteous servant will justify many,
and he will bear their iniquities.).

In our busyness and distraction He still calls to us. He is Emmanuel, God with us. May He be with you and me this Christmas season.

Joe P. Rally Run

2010-12-01T12:33:00.005-06:00

Dust off those running shoes, because the Joe P. Rally Run is coming up. It will be held on April 16th, 2011 at Centennial Park in Nashville, TN. We are so excited about this year's race. There will be a lot of new things, including a 1K Fun Run for the kiddos! The Fun Run will be at 8:30 and the 5K will begin at 9 a.m. The children will run against the Chick-Fil-A cow, and if they beat him (I have a sneaking suspicion he is very slow :)) they will get a prize from Chick-Fil-A!

There will also be some amazing prizes for the adults running. I think I've heard rumors of free Chick-Fil-A for a year to 2 winning adults!

But, most importantly we are excited to celebrate Joseph's life and try to raise money for childhood cancer research. We have raised the goal to $50k this year. Do you think we can do it? I do!

A few high schools from the Nashville area have formed teams and will compete against other teams that form. I believe there will be a way to do that on the website soon.

To register, go here.

We hope you had a great Thanksgiving and have a wonderful Christmas. And, we hope to see you in April!

***P.S.*** My sister is doing a giveaway for a beautiful new stamper here. It ends Friday, Dec. 3.

Hungry

2010-10-21T12:46:00.006-05:00

The girls and I have been blessed lately to spend time with some wonderful people we call "the sweet people." My dear friend Holly nicknamed the residents at a nursing home this because she said they were so sweet. She took her children to see them every week until she moved away a couple of months ago. My friend Beth and I decided to fill in for her since "the sweet people" loved seeing children every week and missed Holly and her kids (but I don't think we will ever compare to the famous Holly at this place).

We have only gone twice but I just can't describe the impact these women have had on me already (there are some men, but it's mostly women). For one thing, many of them are as sharp as a tack. There is one lady I'll call Shelley who has become my favorite. She is a beautiful woman of 90 years old who is bedridden. She really never leaves her bed, except maybe to bathe. But she is full of encouragement and kindness and compliments. I am amazed that in a short visit of 5-10 minutes I come away feeling like a million bucks. We'll just be talking about the children or her grandchildren or something, and she'll slide in a compliment somehow that leaves me a little befuddled. (Aren't I here to encourage her? I neeed to focus more.)

Today she revealed her age to me and I honestly was shocked. Aside from being unable to walk around she has great mental acuity and her face looks young and happy. When I said, "Wow, you do not look like you are 90," she quickly came back with, "I thought you might say that. That's why I told you." Then I said, "I would have guessed 55," with a little smirk. She then asked, "Can it go a little lower?" I confusedly asked, "The bed? I'm not sure I know how to move it..." and she said, "No, no, the age. Can't it go a little lower?" That made me laugh out loud. I guess I need to work on my compliments!

As I was walking June out, I chatted with her roommate a bit and mentioned how quickly time goes by and how I can't believe June is already one. I didn't even think Shelley was listening because her TV was on the news and it looked like she was watching it, but she piped up without even looking over at me, "Time to have another one!"

Already telling me what to do. I love it!

Aside from being really amused by some of these sweet people, visiting them has also made me ponder my own life and what I value most. These women have a few pictures of children, grandchildren and great grandchildren, and maybe a few books and paintings in their rooms. After a full life of marriage, raising children, careers, and whatever else they accomplished in their lives, this is what is left: a small room and a few precious belongings.

It would make me cry just thinking about it if they didn't seem so happy and sweet. This nursing home looks like a four star hotel. The residents are well cared-for and are given lots of little luxuries. If I ever need to be in a nursing home I want my name on the list here.

But there is something that seems to mark every person we have visited: They are hungry. They are overjoyed that we have come. They want us to come again. They offer us little candies and little gifts. Every single room visit ends with a pleading, "Come back."

Today June toddled over to a lady eating her lunch and put her arms up for her to hold her. The lady eagerly threw her fork down, reached for June and held her like she would never get to hold another person in her life. That interaction almost did make me cry. She was so thankful to hold a baby and so happy that June reached for her. I could tell she savored every moment of that sweet embrace.

Every person we encounter is hungry for love and conversation and interaction. This is what they value most. They have all the time in the world and no-one to share it with. All of their possessions and achievements and jobs don't mean much to them now. What they want is to hold someone and love them and feel important.

I think I have mentioned before how I tend to be a doer. A busy person. I like to have projects and things to do and see. Maybe you can relate? I do love people and I love my children but I often find myself putting my "to-do" list above the people in my life.

But God seems to constantly be driving home this point to me to cherish the people and the days I have. I know one day I will be old (if I don't die sooner). That is a certainty. I'm not getting any younger. One day my children will be grown up and living lives of their own and I will be hungry to have time with them. I already know the ache of longing to hold and be with a beloved child.

Right now they are hungry for me. They are little and need me for just about everything and I'm tired. But for this day I'm praying for the grace to enjoy the life God has given me and the precious people he has entrusted me to love.

"Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is thy faithfulness!"

~Lamentations 3:21-23

September

2010-09-06T21:34:00.003-05:00

September is Childhood Cancer Awareness Month. Just wanted to remind you all that "The Big Day" at Chili's is Sept. 27th. On that day Chili's donates 100% of its profits to St. Jude's. Pretty amazing. So, eat at Chili's!! Not only are they extremely generous but they also have the best strawberry lemonade this side of the Mississippi.

If you feel like eating at Chili's just isn't enough for you, we've come up with a few lesser-known places we feel are pretty deserving of donations:

Give Kids The World: This is the resort where we stayed when Make A Wish sent us to Disney World. They provide beautiful comfortable accomodations for children and their families who are battling cancer. It is also a mini-Disney World in itself, with many fun activities for all ages of kids, along with free ice cream any time of day, pictures with Disney characters, and an indoor play castle.

Rally Foundation: This organization, through volunteers across the country, raises awareness and funds specifically for childhood cancer research to find better treatments and cures for childhood cancers. We did the Joe P. Rally Run with them last year and raised $20,000 for childhood brain cancer research!

Aflac Cancer Center in Atlanta: Recognized as one of the top childhood cancer centers in the country by U.S.News & World Report, the Aflac Cancer Center treats more than 350 new cancer patients each year and follows more than 2,500 patients with sickle cell disease, hemophilia and other blood disorders. Joseph was treated here after he was diagnosed.

Another way of giving is simply donating toys to the children's hospital in your city. This is a great activity to do with your kids. They can help pick out the toys and imagine how excited a child will be who is sick in bed and can't get outside to play.

We also wanted to let you know that the Joe P. Rally Run has been postponed until April 16, 2011. It will be in Nashville again.

Thank you for all your support last year. Because of you, we were able to send $20,000 to the University of California San Franciso. They are testing new drugs to treat pediatric malignant gliomas (including glioblastoma multiforme) and are showing some promising results in the early stages of testing. We were so excited to hear this as very little is being done anywhere to research pediatric high-grade gliomas. Let's help to keep this research going! We will let you know when the website is up and you can sign up for the race.

How to help a friend who has lost a child

2010-08-25T17:21:00.004-05:00

I had the honor of guest posting on my friend Missy's blog (It's Almost Naptime) today. She is actually a friend I have never had the pleasure of meeting in person, but I discovered her blog a while back and it soon became my favorite. We started emailing and it turned out she had followed Joseph's story and had been praying for him for months. Missy is one of the funniest and sweetest people ever. If you don't already read her blog you really should!
A few weeks ago she asked if I would write a little something about how to help a friend who has lost a child, so if you are interested you can hop over there and take a look.

Gazing heavenward

2010-08-21T12:28:00.014-05:00

Happy Birthday, Joseph

2010-08-19T22:23:00.002-05:00

This is the slideshow we made last year of Joseph's life. We've added one more song that Allen wrote, called "Back Home." (This isn't the official polished version as it is still in production, but the slideshow distorts so much of the music that you can't tell.) Thanks again to John Moessner who worked for peanuts.

Happy Birthday, Joe P.! We miss you more than words can say. One day we'll all be back home and what rejoicing there will be!

Photo and video editing at www.OneTrueMedia.com

Joseph's Birthday

2010-08-17T22:42:00.000-05:00

We are almost at what would be Joseph's 6th birthday. Allen and I really don't imagine much what he "would be like" now because it's just too hard to even do that. To us he will always be 4 years old. But I can't help thinking that this would have been a big year for him, starting kindergarten and beginning to be more independent of us. I can just picture him so proudly wearing a big backpack and bounding up to new children and charming them with his infectious laugh and mischievous spirit. He always wanted to include everyone and make sure everyone was happy and having fun.

For weeks I have been trying to prepare myself for these two days: August 20 and 21, but there doesn't seem to be any real way to make them better. To be honest, every day is difficult and in a way these days are easier because most of our close friends acknowledge that they are difficult and so we have support there. It is the random days during the year where we just feel down for no apparent reason and feel like everyone has forgotten him and forgotten that we miss him--those days can be the worst. But these two days are still hard as we have lots of memories that we relive and then there is just the pain of celebrating his birthday with his empty chair staring at us.

We do believe that Joseph is with Jesus now and that his life had purpose. There is no way we will ever understand why this happened to him and to us but we do know God is the same God he was before all this and He is still our only safe refuge. There just is nowhere else to find real peace. For a while after Joseph died I just couldn't talk to God much. Still believed in Him and knew He still loved me but there was nothing to say, to him or to anyone. I felt so deeply wounded. I think I tried to ignore him and retreated into my shell of self-protection or self-pity. It was just hard to accept that life was still happening outside of my pain. But after a long time of that I am remembering how much I really need God for this life and self-pity is a slippery slope that leads nowhere good. God has been faithful to meet me as I crack open that Bible (mostly the Psalms) and open myself up to Him. And I feel so encouraged as verses really apply to where I am in life and instill hope in me for the future. One Psalm in particular has been very comforting--Psalm 73. The whole Psalm is wonderful but the last few words have resonated with me: "But as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds." It is just good to be near God.

For Joseph's birthday we plan to go to his favorite spots again this year, have some cupcakes and send balloons up to heaven. If you would like to celebrate his birthday this way (sending balloons up), please do so. And if you get a chance to take pictures we would love to see them and maybe post them all on the blog.

Still here...

2010-06-01T07:41:00.007-05:00

Well, I'm not sure where the last 9 months went! Having a baby can be pretty all-consuming, I guess. But June is almost 9 months now, Holly is 4 and summer is here. I am so thankful for summer and pool days and lots of sunshine. Here is Holly going to her last day of school:
:))

June playing with her "schoolhouse":

Both these girls continue to bring us lots of joy. It is hard work but oh-so worth it. June's little personality is really coming out and it is so interesting to see how every child even within one family is so unique. She is very sensitive and loves Holly. If Allen and Holly are playing and Holly screams laughing, June cries. She thinks Holly is hurt and gets very upset. We keep telling her, "It's okay, June. And we smile and say "yay!" but she still cries if she thinks Holly is hurt. And Holly is equally as protective of her (most of the time). I think she cannot wait till June is walking and playing with her on the playground. She is really careful to pick up tiny little parts to her toys "so June won't swallow them" and showers her with hugs and kisses. Many times these hugs have ended with June toppling, but the intention is sweet.

We still miss Joseph a lot. I was really distracted for many months after June was born and just didn't have time to grieve and be sad. But I think now it's hitting me again how much I miss him and wish he could meet June and be Holly's big brother, etc. Holly also misses him a lot. The other day she was saying how much she wanted to go up to heaven and bring him back and then he could never leave again. We finally decided she could draw him a picture and put it in an envelope with some candy and send it up with some balloons "to heaven." This really made her happy and she did enjoy doing it. As she's getting older she asks many many questions about heaven and dying. One book that has helped so much is "What About Heaven?" for kids. If you ever need a resource for children who are dealing with death and eternity this one is great. It asks a bunch of questions at the beginning of the book, then at the end answers them. Holly thought it was great that it never was night and always is day! She saw in one of the pictures that there was a bed in a kid's room and she asked a great question: "Why do they need a bed if it's never night?" She's always thinking!! If any of you have other good resources please let me know. I know she will continue to ask questions and we are going to need wisdom!

We are drawing close to Joseph's birthday (and the day he died) and that brings so many memories and emotions. I will sometimes go back and read through this blog to look at pictures and be reminded of certain things and I'm always blown away at how loved and prayed for we were throughout Joseph's illness. I have no idea why God caused so many people to care for Joseph and our family. We were (and are) so blessed. Thank you to everyone for showing us God's love in a very dark time.

Allen and I will celebrate 9 years of marriage tomorrow. I simply cannot believe what all life has brought us in our 9 years. We were looking through our honeymoon photo album and we were marveling at how young and carefree we looked (and skinny!). We had no idea what lay ahead of us. Lots of fun and great memories, but also a lot of sadness. But I am so grateful and proud to call Allen my friend and husband. He has been God's good gift to me throughout all the ups and downs. He has made wise and sacrificial choices for his family and I'm so thankful for that. We have had our fair share of struggles and hard times, but I have to say I'm still pretty fond of him. :) And he's still the funniest person I know.

This is how we feel at the end of each day (and after Holly's birthday party :)).

We Have a Winner!

2010-05-14T19:26:00.002-05:00

Holly picked a number out of a toy pot, and the lucky winner is #17, trmills. That's you, Rhianna! Congratulations!! Rhianna is my dear friend and penpal so I am very excited that just maybe I will receive a letter on these gorgeous notecards (no, pressure, though!).

Thanks, Lynny, for another great giveaway prize!

Giveaway Time!

2010-05-12T08:11:00.006-05:00

Well, my sister has again generously offered to do a giveaway, folks. She has gone back to school and has been busy acing organic chemistry (Yes, she's smart and beautiful...I try not to let it bother me) and other such classes, but I have begged her to not forget her first love: stationery. I think we can all agree that having beautiful stationery is a luxury a person should really try to not live without. :) And if it's free, it's even more beautiful!

So, here is your mission, should you choose to accept it:

Go to Lynn's newly designed website and pick out your favorite product and design and leave it in the comment section by Friday evening, May 14th. Please include your email so that I can contact you if you win!

The lucky winner will receive 25 of these beautiful Whitney English notecards (you may pick the design and personalize it):
There is also a section with personalized notepads for $4.75 in case you just need some or know a teacher who needs some. And, one more great deal is these personalized notecards for just $12 (They are listed as 50 for $60, but if you click on a card you will have the option to order 10 for $12).

Little Miss Personality

2010-03-10T14:36:00.004-06:00

June bug turned 6 months this week! I know every mom marvels at how quickly their child grows, but I have to say it: I cannot believe she is 6 months old. I know the next 6 months are going to go even faster.

She has followed in Joseph and Holly's footsteps and is already crawling. She has become so full of personality lately and giggles and laughs at Holly nonstop. She is so happy. I picked her up from nursery the other morning and the sweet nursery coordinator said, "Is she always this happy? I'm sure she's not." But, most of the time she is. Here are some pictures of her royal cuteness :
All decked out!

Best friends

I like my thumb, but my toe will do.

On our way out on our biannual "walk the dog" (okay, we walk her slightly more than that--but not much).

We moved back to Atlanta about a year ago now and I was just looking back at our time here. It seemed like when we moved back the sadness was still so heavy on me. I missed Joseph so much...it just consumed every day. Now I have suddenly realized that it's not the same anymore. I still do miss him every day but it is not so all-consuming. I thought before June was born, "Having a baby is not going to make this all better. I am thrilled and blessed to have a new baby but nothing will replace Joseph." I even resented that people might think that I was all better because I was going to have a new baby and we'd moved on. But for me, June has brought a lot of comfort and healing and new joy. It's not all lilies and roses--I get tired and frustrated like every other mom, but I am so grateful I get to be her mommy (and Holly's). Having her really has helped me heal and I am so thankful for that.

Holly continues to love her and be very protective of her. She definitely craves one-on-one time with me since I'm holding June or feeding her a lot of the time, but she is always saying things like, "You're the cutest little baby in town," or "You are so beauutyful." Although the other day, after June had napped over 2 hours she started making noise and I got up to get her, Holly said, "Just leave her. I think she'll go back to sleep!"

I guess everyone loves attention. :)

A Place For Us

2010-02-25T12:00:00.006-06:00

Ah, the brewing post. I'm not exactly sure what that post was going to be about. A lot of times I will have a thought going and think, "I need to write about this..." then 2 days later it's gone. So, I'm sorry to have led you astray. I did have one brewing but you are getting another one. :)

As you know, we were so very excited to be pregnant with June. For a while before Joseph died I was longing to have another child but for various reasons it seemed wise to wait. Then after he died the longing increased. Very shortly afterwards God answered our prayers and we were blessed with a baby growing inside me. In many ways this was my hardest pregnancy. I was already tired from all we had been through, then being pregnant just seemed to suck all the rest of the little energy I had left. I think I also just felt older and less resilient and then she ended up being a very big baby so I was pretty uncomfortable towards the end. But, none of that seemed to matter compared to the reward I was promised at the end: a precious little baby that we had waited for and prayed for.

We weren't very busy during that time. Allen was waiting tables and I was taking care of Holly but had lots of help from grandparents. I had a lot of time to myself and had time to grieve my loss but also anticipate this new baby. I dreamed of what he/she would be like and couldn't wait to find out what he/she was so I could start decorating the nursery. Then when we moved to Atlanta we had (have) a small room for her---one just begging to be transformed into "all girl."

I'll be honest. I went a little nuts decorating this room. Maybe it was part of my nesting process or maybe I was excited to test out my new hobby: sewing. But this girl got more handmade things from me than Joseph and Holly combined. I sewed blankets, burp cloths, pillows, chair covers, really anything I thought I might be able to do. The thing I love about sewing is that you can have a finished product within a couple of hours in many projects. Patience is not my forte so this definitely appeals to me.

We also painted the crib, the room, put up curtains, got out the sheets and blankets and somehow everything seemed to go together even though it was mostly a hodgepodge of things we already owned. For many weeks before June was born, she had a place waiting for her. And I mean, diapers, wipes, burp cloths, sheets, clothes. Everything was ready. (Which is so not normal for me, by the way. With my other two pregnancies I was not even close to being this prepared and I don't anticipate ever being this prepared again.)

So as I sat in that room the other night with my almost 6 month old, I looked around the room and remembered when she wasn't in there with me. I would love to peek in and think with excitement that soon there would be a baby in the crib; soon there would be clothes in the laundry hamper and toys on the floor. But more than that, this room was full of June before she was even there. All those things I made or picked out or laid out were all there with her in mind. I was picturing her in that bed, her in those clothes, her in the rocking chair with me (boy, I hope she likes the colors!). She had no idea what all I had done for her before she was born. She was not aware of the stuffed animals or blankets or burp cloths that were all there for her. She was just born, and all this stuff is hers.

Which finally brings me to the thought I had (thanks for bearing with me!): God does this for us. For us, who are so often oblivious to the work He has done on our behalf, the sacrifice he has made, the joy he feels that we are His children. He carefully made each one of us, thought about what we would look like, be like, sound like. And He goes ahead of us and prepares a place for us in heaven. If I (and so many mothers), in my limited, sinful, human state can put loving thought and excitement into decorating a nursery, how much more skill and love and preparation must God put into the place He has prepared for us. I, for one, cannot wait!

This is purely my own imagination, but I started thinking that maybe this life we have on earth is just the "womb." God knits us together, teaches us, forms us to be more like Him, then death is our real birth into real life where our real room is ready for us. Not to minimize the life we have on earth. We all know how delicate and important the formation in the womb is. Our life here matters, but maybe it's just as C.S. Lewis says "the title page." The real story is yet to come.

"Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going."

John 14:1-4

Happy Birthday, Holly Bear!

2010-02-01T14:48:00.005-06:00

Hey! Remember me? Joseph's mom? The lady who occasionally used to update this blog? It's okay if you've forgotten...it's been a long time. I do have a post brewing in my head but it may have to wait till next week.
Today is Holly's 4th birthday. Very hard to believe. We are so grateful for this little bundle of joy and look forward to another wonderful year of Holly! Here's a little "through the years" of Holly bear.
4th Birthday

3rd Birthday

(close to) 2nd Birthday

1st Birthday

Newborn

Winner Winner!

2009-12-03T21:50:00.002-06:00

The lucky winner from the giveaway is #17, Allyson. You can contact Lynn directly to pick out your two cute sets of notecards. Thanks, everyone, for participating.
Merry Christmas, and have fun shopping. Has anyone out there already finished? I started mine last weekend, but I still have quite a few more left to buy.
In fact, I think I might have to buy some of those notecards...

Giveaway!

2009-12-01T19:36:00.006-06:00

This is another 48 hour giveaway! If you didn't win last time, here is your chance to win some more beautiful stationery. My sister is generously giving away 2 sets of darling notecards (of your choice) from Hen & Barley Press (one for you and one for a Christmas present to a lucky loved one). These cards are so reasonably priced and make great gifts for teachers or babysitters or anyone, really. They also ship very quickly.

Here is what you could win:

or

I just love these!! There are many more gorgeous designs on the website. To enter the drawing just visit here, then come back and leave a comment saying your favorite design. On Thursday evening I will pick a winner from everyone who left a comment. The lucky winner will get to pick two sets of notecards. If you don't win and decide you want to order these as Christmas presents, you have until December 14 to receive them in time for Christmas.

Happy Shopping!!

Update on June

2009-11-29T21:10:00.008-06:00

Well, I guess it's not really fair to have the cutest baby alive and not give out any updates on her. :) Little June is almost 3 months old and is working on her ABCs. Just kidding. She is really smiley and has started "talking" back to us when we talk to her. This is quite adorable and just makes me want to sit and talk to her all day. She loves to be held and only started tolerating her bouncy seat or swing at about 2 months. Now she can sit in there and smile at the lights or the mobile and be very content, which makes me very happy too. It is nice to have my arms back when it's time to cook dinner, play with Holly, etc. She is growing well and continues to be in the 95% for height and weight (that's my girl). When I look at her I see Holly as a baby, but then when we have looked back at Joseph's baby pictures she looks so much like him as well. I suppose all our children will resemble one another quite a bit. She definitely has Joseph's great arm and leg rolls and those fabulous chubby cheeks.

We are really thankful for this little girl. She is bringing us a lot of joy and it is just really fun to watch her little personality unfold as she gets older. She loves the sound of Allen's voice and lights up when she hears it. She does the same for Holly's voice and I can tell will have the same admiration for her that Joseph did. She is a fun girl to watch--always moving or dancing or playing pretend.

I am loving having two kids in the house again. Now that there is another child along with Holly I have found myself several times wondering, "Where's Joseph?" We will just be in the living room and I will have this strong feeling that he is back there napping. Sometimes it still doesn't feel real that he is not with us anymore.

The other day we were eating at Moe's and Holly saw a family with three children. She said, "They have FIVE people in their family!" Then she looked at us and said, "We have four, and one in heaven." Then she took a bite of food, and reconsidered. "We have five people in our family." I thought it was really sweet that she was thinking about Joseph, and I have to agree with her. We do have five. I have learned to not always share this with strangers, but I'm glad Holly still considers him part of our family because he was such a huge part of her life since the day she was born.

I am looking forward to seeing the relationship that is forged between Holly and June. Holly continues to be very protective of June and very helpful (i.e., pulling out ALL the burp cloths and getting me 10 diapers at a time). She also will bring me water and bring me the boppy when it's time for June to eat. What service! I can tell she is adjusting to not having my attention all the time, but I think overall she has handled the transition very well. I hope and pray that she and June will be close friends as they grow up together.

Thankful

2009-11-17T10:01:00.003-06:00

Death has a way of bringing life into focus. This morning I was thinking how I used to say, "I'm such a boring Christian. I never used to be a drug-addict living on the streets and Jesus saved me from a life of crime." Nothing dramatic. Jesus just quietly revealed himself to me through my sister, and I just found Him beautiful and believable. It was more the "I wanted what I saw she had" thing. I saw how her life changed dramatically one semester at college and it was just evident it was a supernatural thing.

Anyway, now I feel like maybe my story is a bit more dramatic. I guess not many people say they had to say goodbye to their 4 yr. old son due to a brain tumor, but they still believe in God. And not only that, but that they are more convinced of God's goodness and faithfulness because of it. Please don't misunderstand me; I do have feelings of abandonment by God, unfairness at what Joseph had to endure, etc., but this whole journey has proved God to me more than a hundred sermons could. Because if I could have walked away from God I definitely would have. But I couldn't and I can't. It is just not in my power. Losing Joseph made me realize that my security in God is not based on me; it's completely based on him--His faithfulness, His pursuing, His providing. The only thing I offered God for a long time is sadness, complaints, my own sin and pleas for mercy. But He hasn't let me go.

I read the book "A Severe Mercy" not too long ago. It is just a wonderful picture of a loving marriage, but at the end he has some great conversations with C.S. Lewis on grief and loss.

Lewis writes:

"It is remarkable (I have experienced it), that sense that the dead person is. And also, I have felt, is active: can sometimes do more for you now than before--as if God gave them, as a kind of birthday present on arrival, some great blessing to the beloved they have left behind."

I thought it was so neat to think of God passing on a blessing to those left behind. For me, the gift has not been a sense of Joseph's presence or being, but I do feel a deep contentment even amidst missing Joseph. I feel like his gift to me is the desire/ability to appreciate each day, no matter how mundane or draining it might be. I look back at days that I wished away and just don't ever want to repeat that mistake. They may have been exhausting days, but they were the days of Joseph's life.

My pace of life is a lot slower now. I will sit and smell June's hair and cuddle with her for a little longer, remembering how quickly these days go by. This is going to sound crazy, but I'm even a little sad that she will stop waking up in the middle of the night soon. I remember going in to Joseph when he would wake up at night while he was on steroids and it wasn't fun to be woken up, but I was so grateful he was alive and was not sure how many more nights we would have to cuddle and "hold handies" together. I used to get so annoyed when either of the kids would wake up at night, and while it isn't my favorite thing to do, I couldn't believe that at one point that was my biggest complaint. How blessed I was!

Even though I have experienced every parent's worst fear, I am grateful for the change in perspective I gained from it. I don't think I ever truly grasped how blessed I was to have children. I feel like God has given me a deep gratitude and contentment being a mom, something I didn't have when I first began this journey. That is the gift I feel Joseph left behind for me, and I'm thankful for it.

Rally Run Official Pictures

2009-11-11T18:09:00.010-06:00

Here are some more great pictures taken by our official photographer who was given as a gift by our friend Lesli. I was so grateful because I love to take pictures but knew I would want to be soaking up the morning and talking to people, not worrying about taking the photos. Thank you, Lesli! And the wonderful photographer is Amber Beckham who captured the whole event fabulously.

Thank you again to everyone who came out and everyone who supported the first Joe P. Rally Run!

Joe P's Rally Run

2009-11-04T20:52:00.004-06:00

The first annual Joe P's Rally Run was a huge success! We had terrible rain the night before and early that morning, but it cleared up just in time for the race. Thank you to the 150+ people who ventured out in the cold to support this event. Special thanks to Matt Peabody, Jon Holt, Clay Perry, and Joey Northern and the Rally Foundation for working so hard to organize this. And more special thanks to all the sponsors (E+ Cancer Care, Girtman & Associates, Moe's Southwest Grill, Big Move Games, Advanced Network Solutions, Pure Barre, Dick's Sporting Goods, and Journal Communications) who gave so generously and to all of you who donated. And thank you to Veggie Tales for the awesome umbrellas for all the kiddos. There were many people who worked so hard and gave of time and resources, so if I missed you, please know we appreciate your help and hard work.

We are overwhelmed at so much generosity. Together, we raised $22,300 for childhood cancer research. Praise God! All the money will go to the Rally Foundation which will put it towards pediatric brain cancer research specifically.

I am only posting a few pictures now but we had a great photographer there (thanks Lesli and Amber!!) so I will be posting her pictures soon.

Thank you again to all of you who came out and all of you who supported us. We are so grateful. See you next year!

Run, Baby, Run

2009-10-16T22:05:00.002-05:00

Two weeks until the first annual Joe P. Rally Run!! I am so excited to visit Nashville and to participate in this race. The jury's still out on whether or not I will be able to run. I'm not hurt or anything, just out of shape! I will definitely be either walking or running or Allen will carry me. :) Or maybe someone can push both of us in our double jogger.

Dick's Sporting Goods has generously offered a $50 gift card to the person with the best costume. So, come decked out in your best costume and maybe you'll win! I have a great idea for one, so I'll have to see if I can get it ready in time (in all my free time with a newborn- ha ha).
Also, to ensure you get a t-shirt (and in the correct size) please register by Monday!! The t-shirts will be ordered on Monday so after that you may not get the exact size you would like.

Oh, and the website is www.joeprallyrun.com. You can sign up right there on the website.
Thank you to everyone who has signed up or donated! Happy Fall, and hope to see you all soon!!

Childhood Cancer Awareness Month

2009-09-19T09:29:00.003-05:00

September is National Childhood Cancer Awareness Month. Last year I totally missed it. I wanted to let you know about a couple of ways you can show support:

Chili's restaurants are donating 100% (yes, all of them!) of their profits to St. Jude's on September 28th. Kids can even decorate their own pepper to put on the wall to show their support.

You may also participate by running in/supporting Joe P's rally run, which will take place on Halloween in Nashville. Go here to sign up. Thank you, thank you, thank you to all of you who have donated or signed up. We are already at 30% of our goal of $25,000!! The Peabody clan will be there. I'm hoping to at least walk fast. :)

On the homefront, we are adjusting well to life with our new bundle of joy. June is such a sweet baby and Holly is being the sweetest and most caring big sister ever. She is so proud of "her baby." We have had lots of help from grandmas which has made the last couple of weeks so much easier. Thanks, Nana and Mimi, for your tireless helpfulness and love.

Hope to see you all at Chili's or in Nashville on Oct. 31st!

Welcome Maggie June!

2009-09-10T10:10:00.006-05:00

On Monday morning (Labor Day!!) we welcomed Maggie June to our family. She arrived at 5:09 a.m. and weighed in at 10 lb. 4 oz. and was 21 in. long. Our very sweet friend and neighbor, Abby, got a call from us at 2:15 a.m. and she rushed over to stay with Holly so we could go to the hospital. It was hilarious because Abby had told me, "Please call me if you go into labor, even if it's at 2:37 a.m." When Allen and I got into the car the time was 2:37 a.m. She was close!

So we arrived at the hospital and June was born 2 hours later. It was obviously a very quick labor, but everything went very smoothly and she is a healthy, sweet, adorable little baby. Holly is completely over the moon about being a big sister and is doing great in her adjustment to having a new baby in the house. She is very protective, too. Today I told her we had to take June to the doctor so they could check her weight and give her a shot. She almost started crying and said, "Don't let them give her a shot! I'm mad at the doctor!"

Here are a few pictures of our girl. We thank God for this new blessing. She is such a sweet baby.

Happy Birthday, Joseph

2009-08-19T20:23:00.006-05:00

We are so thankful that God gave us four years to nurture this precious boy, and that all of his days were written in His book before one of them came to be. We are sad we don't get to hold him and celebrate with him on his birthday but we know his day will be full of joy and gladness as he dances before the Father's throne.

Looking back over the last two years it is hard to imagine getting through them without the unbelievable support, love and prayers of our family and friends. We want to thank all of you who have loved us, prayed for us, and basically upheld us as we walked through an unbearably difficult time. It is hard to express the gratitude we have for all of you who have cared for us so deeply. Thank you.

In memory of Joseph's life I have put together a slideshow, along with some original songs by Allen. Over this last year a huge part of Allen's healing has been writing and recording these songs with his friend, John. I know I'm not biased but they are some of the most heartbreaking yet beautiful songs you will ever hear. These two are the only ones ready right now, but we hope to share more of them soon. And please forgive the length of this slideshow. It was just too hard to make it any shorter.

Make an on-line slideshow at www.OneTrueMedia.com

John 14:1-3
Let not your hearts be troubled. Believe in God; believe also in me. In my Father's house are many rooms. If it were not so, would I have told you that I go to prepare a place for you? And if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also.

Philippians 3:20-21
But our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ, who will transform our lowly body to be like his glorious body, by the power that enables him even to subject all things to himself.

Revelation 21
Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

A Letter to Joseph

2009-07-20T13:28:00.003-05:00

Dear Joseph,

I received a birthday invitation to your little buddy's 5th birthday the other day. It was then that it hit me: we are a month away from your 5th birthday. And also about a month from the day we said goodbye to you. The time goes by but the heartache remains the same.

Sweet Joseph, I miss you every day. Every day I ache to see you, touch your sweet face, hear your loud, boisterous voice and laugh. No-one can ever replace the special, beautiful little boy you were to us. When you were little I used to marvel at the depth I would see in your eyes. It seemed they were older than your tender age. You seemed to understand, get things, before you should have. And you proved it with your advanced humor. You could make jokes that adults found funny. But you also proved it with your kind heart and eagerness to love and live life fully.

I loved your mischievous spirit. You always laughed the hardest and had the best gleam in your eye when you thought you or someone else was getting into mischief. You would flap your arms up and down and squeal with delight when you were younger. Then as you got older you would smile excitedly and shrug your shoulders and share the mischief with your partner in crime. You would say things like "Let's not tell Daddy we had another brownie!" or "Let's not tell Mommy I got to stay up late." It was always so fun to share a mischievous secret.

You, with your child-like passion and love for life, grew me up as a person and as a mother. You taught me to get over my selfishness, my need for order, my need for control. I realize now that the most important thing is to appreciate and love fully the ones you treasure. Having a house that's in order will not go in the photo albums. I used to get so stressed about how messy our house got, but now I wish for the mess...the cars and trains all over the place, evidence of a happy child playing.

Anyway, dear Joseph, how I wish we could have a party for you to enjoy. I would love to see you playing with your friends, tearing into presents, and gobbling up your cake. But I know you are celebrating in heaven and your joy and life are complete. We will treasure the days and years we had with you and I will be forever thankful for the lessons I learned from my sweet boy.

Joe P's Rally Run Website

2009-07-05T13:12:00.012-05:00

Joseph's 5K now has a website! You can register to run or just donate to the cause right there on the website. We are hoping to raise $25,000 to fund more research for childhood cancer. I think we can do it! This is the website:

www.joeprallyrun.com

Thank you so much to Matt P. and Rally foundation for working so hard to get this up and running. It will be in Nashville on October 31st. It is not intentionally on Halloween--that is just the date that worked for Centennial Park.

I'm sorry I have been so long in updating! We have settled back into Atlanta and are enjoying our new home. I had a lot of fear/anxiety about coming back and being away from family and Allen starting back into a crazy schedule but so far God has made the transition relatively easy for us. We have a great community of friends here so Holly and I have been enjoying reconnecting with friends and their kids and she and I have been exploring our new area of town, finding the library and pools and such. We just joined our neighborhood pool (which we didn't even know about when we moved in!), so I can see that being a great source of entertainment for the rest of the summer. We also had a nice couple of weeks before Allen started back at work. For Father's Day he was lucky enough to get princess Yahtzee, a game he has been begging for for months :). Holly likes to play this game approximately 5.3 million times a day. Isn't this guy a trooper? He even participates in tea parties.

Allen had a couple of weeks of orientation but officially started back at Emory on Wednesday. He had completed 6 months of his intern year, so they gave him credit for that. This was the hospital where we took Joseph initially so there have been moments that have been very emotional for him. I cannot imagine even stepping foot inside that hospital without just breaking down, so I am so proud of him for entering back into this despite all the obstacles. It is not humanly possible to get through this, as I know he will be confronted with children that remind him of Joseph or have similar illnesses, but (as trite as this sounds) with Christ all things are possible. And somehow in our very weakest state, He is glorified most.

The baby is growing steadily and I'm wondering (again) if my belly could possibly grow any more. I know it can but when I look at it I just don't see how it's possible. I have about 2 more months until my due date, but who knows when this baby will make her appearance? Joseph was 10 days late and Holly was 5 days late, but I'm really hoping this one won't wait that long! She is moving around a ton, and often I will think something has hit my belly but it's just her kicking me, letting me know she liked her lunch. :) Here is an updated picture:

I am so thankful for this new little life inside me and hope it will help in this continual healing process. Having Holly to care for and snuggle with and entertain has been vital for me this last year. I just cannot imagine losing a child and then just having an empty house--no-one to wake me up in the morning or need playdates or activities, etc. . I don't even want to imagine what state I would be in if that were the case.

I had a doctor's appointment today and everything looked great. The doctor even let me have another ultrasound--just because. She was measuring great and she estimated the baby weighed about 3.5 pounds. It is amazing to me that she will most likely gain another 5 or so pounds in the next few weeks.

I hope you all are enjoying the summer and getting to enjoy pools and beaches and cookouts and all that fun summer stuff. Hope to see you October 31st!

Heaven

2009-06-01T22:07:00.002-05:00

I've never experienced life to be perfect, nor have I expected it to be so. I am usually not surprised if things go wrong. I don't feel offended. It's just the order of the universe. I do believe God is good and is in control, but somehow this world has gone very wrong. The fact that there is genocide in Africa, a booming sex trade in Europe, and millions of orphans worldwide testifies to this fact. Clearly, I am not the only person who has to deal with the effects of sin and death. So I usually feel like I can deal with my small share of difficulties.

However, losing Joseph has changed me in so many ways I almost feel like I've emerged from this a new person. I really and truly don't expect that everyone I'm close to will be alive tomorrow. Death has come so close to home that it seems like a very real possibility that anyone I love could be taken from me at any time. I look at newscasters or sportscasters and see their smiling faces and wonder, "Do you know how short life is? You are reporting on someone dying as if it couldn't happen to you or won't happen to us and yet your life could be taken from you this next minute." I just feel like world is carrying on in some kind of charade, pretending like we live forever and death is this horrible end that only comes to the very unfortunate or very old. But we all die. Every single one of us. No exceptions (unless God returns before we die, of course). Okay so that's the one exception. :)

But we don't live like we know we are going to die. We go about life, collecting toys and things and money, and chase after bigger houses, nicer cars, better jobs, as if all that will guarantee us some kind of permanence. How did we buy into this?

We were invited over to a couple's house the other night--the Scotts. They have lost two beautiful small children to a rare neurological disease that slowly robs its victims of the ability to talk, hear, move, function, yet it spares their brain in that they are aware of what is going on in their little bodies. They felt trapped in a once healthy body and their parents were powerless to stop their deterioration. What kind of hell on earth would that be?

Yet they invited us into their home, cooked us dinner, allowed us to see their children's rooms and pictures, and generally opened their hearts to us. I felt like we were walking on sacred ground. They had moved into this beautiful farm house with a barn to provide a better environment for their children and I felt so special they were willing to share it with us. But more than that, we instantly entered into a level of talking that I think is unusual for a first meeting. We talked about suffering, anger, pain, God, our counselors, our feelings, how we cope with our individual pain, etc. It was beautiful to enter into a real conversation about real things and not pretend like our lives were perfect. Sure, they are angry, confused, raging at God, raging at other people. But that doesn't scare me anymore. Before all this happened with Joseph, I would have been really sympathetic, but not very tolerant of people irate at God. I would have thought it irreverent. Now I see it as a natural honest response, and one that God can handle. And God has shown me the depths of feelings I can experience so when I see those in other people now it doesn't offend me or scare me like it used to. I really felt so blessed that they would share a window into their souls with us.

They are faced with the sobering fact that this world is not it. Their children are now in another place, and as much as we live in this world, our hearts are tied up in another. But the other side of feeling like death is close at hand is feeling like heaven is close at hand. I think so much about heaven now, talk about it almost every day with Holly, and probably view it as a much more real place than I used to. Holly will still say things like, "I like playing with Joe P. the best. But, he's in heaven." Or, "I do have a brother, but he's at heaven." We will often speculate about what he's doing, what he's playing with, if he's watching us and laughing, etc. The Bible says in Hebrews that we are surrounded by a "great cloud of witnesses" who are there cheering us on in the "race marked out for us." I believe that to be true, and I like to imagine Joseph very near, watching, laughing, encouraging, much more present than we can actually see.

I also feel like in worshiping now, the realness of God's presence is so overwhelming I can't help but cry. Every single time I go to church I have a really hard time not weeping openly. I don't completely understand why this is, but I think part of it is that I connect Joseph with Jesus now, so when I am singing to God I can picture Joseph there too, joining in the chorus, and the reality of that is so joyful but then sad that I am just overcome with emotion.

One day all things will be made right. One day things will be perfect. I am confident of that. But for now we live in the in-between, caught in a world of pain and sadness and gross imperfection, yet strangely connected to God and heaven and often catching glimpses of that beauty. It is a tough place to live in--yet the promise of perfection keeps me from losing all hope. One day I will see Joseph's smile again, sing with him, play with him and just enjoy being in God's presence. And there will be no sickness or sin or death. That hope doesn't make the pain of missing him go away, but it does keep me from drowning in it.

Moving Forward

2009-04-22T09:12:00.002-05:00

Every day at 1:00 I think of Joseph. It's his naptime. From the time he was about 18 months that has been when his little body turned in for a mid-day rest. Any earlier and he just wasn't ready but if I left it much past then he would start to melt down. I am still trained to think I have something to do at one o'clock every day. Holly is a little more flexible and can make it even until about 3 some days, but usually it is closer to 2:00. But in my head I still think I need to be home at 1:00.

It is things like this that happen every day that make this grieving thing so hard. I really do feel like I'm doing much better, but it's when I randomly feel like announcing that it's Joseph's naptime to our friends at lunch that I wonder if I will ever be normal again. I have so many secret memories and associations that can be triggered at any time, and they can trigger so many different emotions in me. Sometimes I just want to laugh but other times I want to cry.
A few weeks ago we were at the library with some friends and their children. Holly and I came out to the courtyard early before the story time was over and there was another little boy playing by the fountain. I don't see many little boys who look like Joseph but this one reminded me of him so much. He had the exact same sandy hair that was unusually thick for a child. He even was dressed similarly to the way I dressed Joseph. And he had that boisterous personality that we all know and love. Holly just stood and watched him for a while and within a few minutes they were chasing each other and playing. At one point she came over to me and he just came over and smiled to try to win her back. It was so sweet. But I had this crazy thought, "I wonder if I could just watch him for a day...would his mom let me, I wonder?"

Our friends came out shortly after this but I felt like I was just done for the day. I couldn't muster up the strength to have a normal conversation and I know I probably acted a little like a zombie. I was just so overcome by memories and the longing to see my Joseph play with Holly. And I couldn't help just watching him to see if he really acted like Joseph.

My friends may not have noticed, or if they did they weren't bothered, but I am bothered that I can so easily be "not present" when I'm around friends. I have always enjoyed get-togethers and parties and being social, but when I can so easily drift into this world they can't understand it just makes it hard. I feel like I'm the outsider, even though no-one is making me feel this way.
About a month ago I started seeing a counselor to talk about everything and work through some of my feelings. It has been so very helpful and I wish I had done it sooner. At the last meeting she asked me what my goal was--where I'd like to be in a few months. I had a really hard time answering her because on the one hand I don't want to stay in that overwhelming sadness but I don't want to move on and forget Joseph and just pretend like he was never part of our family. So, my answer was that I wanted to be somewhere in the middle--able to live and move forward with hope but to always bring him with us wherever we went. I want Holly and this new baby to know him and see pictures of him and know that he will always be part of our family. The hard part about that is that it will inevitably bring sadness, as we will then have to acknowledge he is no longer with us and that we will be separated from him until heaven. It is hard to even say I want to move forward because it feels like the more we do the farther we move away from him and the time he was with us. But she did encourage me that moving forward is not betraying him, as I had inwardly believed.

I am writing all this because I thought today how many people carry burdens like this all their lives. Maybe it is the memory of abuse or neglect, a deep loss, a struggle with infertility and/or miscarriages, chronic illness, or a painful marriage. And each day they have to struggle against the temptation to be bitter, to just "check out" or give up, or to stay isolated for fear of being abnormal. I guess I realized there is pain all around me and I am not the only one. But thankfully we do have hope. We can bring our burdens to God without trying to minimize them or ignore them and he promises rest. He recognizes that we are weary and burdened (Matt. 11:28) and he offers some relief. He doesn't say, "Cheer up and get on with it," but "Come to me." He will do the changing.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."

It's A....

2009-04-20T11:07:00.006-05:00

Psalm 139:13-16

For you created my inmost being; you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth,
your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

We went for the 20 week ultrasound and are thrilled to say everything looked great and our little girl is growing and moving around well. It was amazing to see her little fingers and toes moving around. Nana came prepared with two signs, one for a girl and one for a boy. As you can see, we used the girl sign because we are having a girl! Holly has been convinced all along that she is having a sister so she was ecstatic when we told her it really was a sister. When we were leaving, she looked a little disappointed and asked, "When are they going to take the baby out?" She thought we were going to get to really see the baby today, poor thing. It is a long time to wait. But if the next 20 weeks go as fast as the first 20 then it will be here in no time.

We are so thankful for this little growing baby and cannot wait to meet her!

And Allen can look forward to many more tea parties and playing like this:

A 5K for Joe P.!!

2009-04-11T08:54:00.004-05:00

We have some more exciting news! Allen's sweet brother, Matt, is organizing a 5K in Joseph's honor. He and his team have come up with a date--October 31st in Nashville, TN at Centennial Park. Mark your calendars and start your training for this fiercely competitive race (Just kidding!). The wonderful Rally Foundation is helping him organize it and all proceeds will go to this foundation to fund childhood cancer research. They will create a website where you may sign up so we will keep you posted about that once it is available. We are so excited about this and are so grateful to Matt and his team for honoring Joseph in this way.

In other Peabody news, we are still planning to move around the end of May/beginning of June. We haven't found a house yet, but at the end of the month I will be going down for a shower and plan to look at some houses then. We have not started packing yet, although that will probably start happening soon (I hope). We accumulated about 5 million new toys this last year, so I'm really dreading tackling that play room. My sister, who is toy-organizer extraordinaire, has promised to help me so I'm holding you to it, SJ!

I've decided to tackle another project--digital picture organizing/printing, just so we have more stuff to pack. :) But, since I haven't printed a single picture since um, 2006, it just has to be done. I have found a great website and it is really easy to upload my many pictures pretty quickly. It has been very sweet to look back at pictures of Joseph and Holly playing together, going to parks, playgroups, etc. They were the cutest little team ever. I know it is crazy to post pictures from over two years ago but I have to share a couple of my favorites (these are February 07):

We wish you all a very happy Easter tomorrow. Yesterday I took Holly to the Resurrection Trail at church and tried to help her understand that Easter is, in fact, about something much bigger and cooler than easter eggs and candy. It was really well done and it made me cherish Christ's sacrifice so much more as I pondered what it meant in real life for us and for Joseph. I think she really understood that Jesus was killed but when I told her that God made him alive again, her face lit up and she was so happy, b/c I also told her that it meant one day she and I and Daddy and Joseph could all be alive together again in heaven (she was quick to add Kellogg to our family). I was so glad we went, though, because sometimes I need things explained to me in kid-terms to make it real in my heart. At the end of the trail all these children dressed as angels were exclaiming, "He is risen!" and it was such a beautiful glimpse of heaven to me and made me feel like we were close to Joseph. We really can only imagine the beauty but I know it has to be staggering. This Easter I am so thankful for the miracle of the resurrection and the sacrifice of Jesus that allows us to have confidence in our eternity.

Good Hair Day

2009-03-25T08:26:00.009-05:00

The other day, Allen and Holly were jumping on the trampoline, and Allen comes in laughing and saying, "Quick, where's the camera?" I was on the phone, so I'm running around trying to still listen while frantically trying to locate the memory card and the camera. We finally put the two together and Allen ran off to complete his mission.

All our efforts paid off, as they resulted in capturing this:

And this:

Hope it makes you laugh as much as it did for us.

We are on vacation at the beach, but will post some more pictures soon. Hope everyone is enjoying some warm weather.

And, if you didn't win during my last giveaway, you can have another chance! Go to:

http://itsalmostnaptime.blogspot.com/search/label/giveaways

for a chance to win some of that gorgeous stationery (and also to find one of the funniest blogs you will every read).

Sleepy

2009-03-05T19:26:00.006-06:00

One of the predominant side effects of my pregnancy thus far is sleepiness. I am very blessed and grateful that so far in pregnancies I haven't had very bad morning sickness. But sleepiness I have. For a while there I was sleeping around 9 hours at night plus a 2 hour nap every day, and if I didn't get that I was just useless by 7:00 (I guess of all the pregnancy ailments you can have, this isn't so bad). I'm starting to feel a little more energetic which I am really glad about, because you just don't feel very productive when you sleep in your spare time. (I am 13 1/2 weeks, by the way.)

Being so tired, I just started feeling like I was living half-awake. And then I wondered, "Is this from pregnancy or am I just not really engaging in life?" I think it is probably a little of both. I read a devotional today (Morning and Evening by Spurgeon) and the verse was:

"Let us not sleep, as do others." 1 Thessalonians 5:6

How fitting! I love how God never fails to suprise me with how much he is NOT asleep and is very much aware of my life.

He writes, "Christians who isolate themselves and walk alone, are very liable to grow drowsy. Hold Christian company and you will be kept wakeful by it, and refreshed and encouraged to make quicker progress in the road to heaven."

I am pregnant and sleepy, but I also haven't made much effort to spend good quality time talking with friends on a deep level. I think I have isolated myself a bit and I didn't even realize it. Then this week an old friend called me and we went walking and just really talked and then at the end of our walk she prayed for me. It was so refreshing and good for my soul and I wondered "Why don't we do this more??"

Then last night after Bible Study I had a really great talk with a dear friend and I surprised myself by how much I shared with her and how much I really NEEDED to talk about some things. I guess sometimes I don't really even realize what I'm thinking or feeling until I talk about it...and lately I just haven't been doing much talking.

So early this morning (probably around 8:00) I got a phone call from another dear friend from Atlanta who I haven't talked to in many months. She said she was thinking about me so much this morning and usually she will pray for someone if they keep coming to mind, but in my case she felt she just had to call. I was so encouraged to just talk with her and to know that God had prompted her to call me. She was able to listen to how I am doing and give me hope that God can lift me out of it and it is really good to be honest with Him first.

I have been wrestling with feelings of anger over Joseph dying and then I feel guilty for being angry, which makes me just avoid God and really everyone. It's just overwhelming to have so many emotions, often conflicting, but then also to just go about everyday life as if life is normal. I guess I feel like I have been permanently maimed but nobody can see it, so I feel different but know I don't look all that different from other people.

All of it is enough to make me want to retreat into my own little world and keep everyone out...but I'm sensing God is nudging me out of that...keeping me from drowsiness. At first I thought, "I just need to really work on opening up and taking the initiative with friends," but then God took the initiative for me, as He always does. I still want to be intentional with talking more freely with God and with good friends about my feelings, but it was nice that He gave these little gifts this week.

I always want to be awake to the love of God, to his beauty all around me, and not become so distracted or dejected that it's like I'm living life asleep. Have you been refreshed and encouraged this week? I hope and pray so. And if not, I hope God will send a friend to brighten your day and remind you of His deep love for you, even while you are in the midst of deep sorrow and darkness.

Some News to Share....

2009-02-25T13:40:00.004-06:00

Can you tell someone is excited about becoming a big sister?

We are so grateful and excited to share that we are expecting a baby in September 2009. We thank God for this gift and for allowing us the joy of another child. We had our first ultrasound a few weeks ago and got to see the heartbeat. Our sweet doctor gave Holly the picture and the first thing Holly did was kiss it.

We are planning to move back to Altlanta around the end of May and Allen will begin his orientation mid-June. I am getting more and more excited about moving back, even though it will be so hard to leave Nashville. But it will be great to be around old friends and be involved in our old church again. And I had a great doctor there who delivered Holly so we will most likely go back to her.

Well, blog-friends, I'm so glad I've gotten to share this news with you. It has been so hard to write on here and not talk about it because it has been on my mind so much, so I'm glad it is out in the open now. Hope you all are doing well. And thank you for supporting Team Joe P. I think the event was a big success.

Thank You, Rally Foundation

2009-02-18T14:21:00.003-06:00

You may already know about this sweet foundation that raises money for childhood cancer research (I have a link to them on the side of our blog). A couple of their athletes biked across the country this summer in honor of Joseph. And all of their fundraising efforts go specifically to childhood cancer research.

I just found out that they are doing a "race in place" (biking) fundraiser this weekend in Nashville and they have a "Team Joe P."! I just got an email and I was so touched that they would have a team in Joe P.'s honor. So, I wanted to let you all know about it. You can visit the team's webpages to check on their progress and even donate if you like.

http://www.active.com/donate/raceinplace/tygunter (from this page you can link to his team members)

I know many of you have run races in Joseph's honor (St. Jude Marathon this past fall was one) and I cannot tell you how much that means to us. Thank you!

And thanks so much for all your work, Rally Foundation. Go Team Joe P.!!

And the Winner is....

2009-02-13T14:56:00.002-06:00

All the numbers were in the hat...

Holly picked #5, Christi from Decatur, GA. Congratulations! Please contact me (agpeabody@gmail.com) so you can order your 50 free monogrammed notecards.

Thanks to everyone who played along with the giveaway. This was so fun for me; I'll have to do another one again soon.

Hope you all have a great weekend!

--Gillian

A Giveaway!

2009-02-11T11:59:00.005-06:00

48 hour giveaway!!!

**FYI: Swee Pea Designs notecards, luggage tags, and bookmarks are buy one, get a duplicate set free! This offer ends February 15th.

This is a really amazing deal. My sister is giving away 50 free beautiful notecards to a lucky winner. It would make a great gift for a friend or a great gift for yourself. :) All of the stationery, luggage tags, jewelry and notepads are adorable. I have some personalized flat notecards and love them! They are not only pretty but great quality.

Here's how to enter the drawing:

Go to http://ltootle.paperconcierge.com/

Pick out your favorite product on the website. Come back and leave a comment mentioning your favorite.

You will then be entered to win one of the shown note card sets:

50 personalized notecards... a $76.00 value!!!

Are these not gorgeous? Holly will draw a name out of a hat and I will post the winner on Friday afternoon. Happy browsing!

Returning

2009-02-06T12:22:00.004-06:00

After a lot of discussions, thoughts and prayer about my job situation, we've decided to return to Atlanta and finish my residency at Emory. This has been a difficult decision for many obvious reasons, but having finally made it, we are relieved and excited to be moving forward. I have spoken with my program director there, who has been unbelievably supportive and helpful throughout the past year, and told her that we were ready to come back. So we're still working out all the details, but it looks like we'll be moving back sometime in the May/June range. We are so thankful to the Emory program who have been so flexible and understanding with everything.

So we're coming back. And we're excited to see all of our friends there. We are apprehensive about moving back to all the memories and places associated with Joseph. And I'm anxious about returning to work at the hospital where he was diagnosed and had the first surgery. So there are some things to be praying for if you think of it.

We are so thankful for our friends and family who have supported us throughout this year and especially in the months after Joseph's death. We feel so blessed to have so many around us encouraging and helping us. We're excited for the future for the first time in a long time and are ready to get going.

Happy Birthday Holly Bear

2009-02-01T21:12:00.007-06:00

Three years ago today we were blessed with a beautiful baby girl, Holly Taaffe Peabody. She was 9 pounds 12 oz and 20.5 inches long. She was a sweet baby who rarely cried and was content most of the time to listen and watch her big brother run circles around the house. We are so thankful for our little Holly bear. She continue to be such a sweet, caring, bright and fun little girl who brings so much joy and happiness to our lives. Below are some pictures scanned into the computer (which explains why they are a little slanted) from Holly's "first" birthday. And yes, that is my real belly.

This year for Holly's birthday we had a princess party. The first thing she said to me when she woke me up was, "Thank you for decorating my house." She was so excited to see streamers and balloons in the kitchen in preparation for her party. She really enjoyed the festivities and we are so grateful to everyone who came to make it a special day for her. I have observed that most children actually do not enjoy their own parties very much when they are little (mine included). I don't know if it is overstimulation or just being overwhelmed at all the noise and people, but I have to say Holly seemed to enjoy every minute and seemed very at ease with all the attention. Here are some pictures from her big princess day:

Ariel and Cinderalla love each other.

We made handprint princess and king t-shirts.

Thanks to artist Aunt Jennifer all the t-shirts turned out beautifully.

Princess Annie

I found this cake online and decided to try it. I'm so glad it didn't fall!

Big three year old blowing out her candles. Happy Birthday Holly! We love you so much.

Great Expectations

2009-01-14T21:27:00.004-06:00

I love our church. We have some of the most gifted teachers and preachers around, and I just feel so privileged to get to hear them talk. Tonight was Wednesday night church, where you can go and eat dinner then break off into various different classrooms. We've been slowly easing back into church involvement, since for a long time neither of us had the energy or desire, and being in a new city I guess it has taken us longer than it would have back in Atlanta. Anyway, all that to say, I saw in the bulletin that Michael Card was leading a class through the book of John, and I thought "Well, that is not something every church offers." If you have not heard of him, he is an amazing songwriter and scholar with a really thorough knowledge of scripture.

So, tonight our friends Kate and Todd went with us and we read through John chapter 6. I could have sat there all night and just listened. But there were a couple of things Michael Card said that just really resonated with me. The first thing was that "if you follow God long enough he will fail to meet your expectations."

In this chapter a group of people come to find Jesus and basically ask him to perform some miracles for them so they can believe in him. He instead turns the tables on them and tells them that He is the Son of God and that he is the bread of life. If they will believe in Him they will have eternal life. He refuses to jump through their hoops and instead challenges their motives and hearts. After this dialogue "many of his disciples turned back and no longer followed him" (v. 66). They had an image of who Jesus was and he wasn't conforming to it. He failed to meet their expectations so they left.

I thought about this because it is so easy for me to create in my head an image of who God is and demand he act that way. He shouldn't make me suffer. He shouldn't let children die of cancer. He shouldn't let friends lose their jobs at Christmastime. And if he fails to meet my expectations, I have a right to be angry.

I really have struggled with trusting God to protect my family now. I had an expectation that he would keep my children safe and it was shattered. I used to read Psalm 23 and think, "This means God will keep evil and sickness and sadness from us, because we are loved." But then I looked closer at the Psalm. It says:

"Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me."

That is exactly what we have done. We have walked in the shadow of death and watched it steal the life of our precious son. But the next verse says "I will fear no evil, for you are with me." Even in the shadow of death we can be safe and fearless. Even if death wins, it cannot take our soul. That is safe in the arms of God. We may experience evil but we don't have to fear it. Now I see God protecting my family in a different light. I pray that He is gracious and does protect our health and lives, but my idea of "good" is so different from His.

Back in John, after some of his disciples left him he turns to his twelve and says, "You do not want to leave, too, do you?" And Peter's response is so simple yet so powerful: "Lord, to whom shall we go? You have the words of eternal life." Michael Card called it "loyal despair." I could so relate to that. I have felt exasperated and heartbroken and angry, but deep down I know where the words of life are. Only His words have ever brought me any real peace. So I have felt like, "Well, I would leave if I could, but I know you would woo me back." I know you are true and real, but I just don't always like what you do. I think God can handle that.

Another thing Michael Card said was that God often puts us in impossible situations so we will see our need for him. At the beginning of the chapter he asks Philip where they can buy food for the 5,000 people who had gathered around him. Philip balks and says that 8 months' wages wouldn't be enough to pay for it all. John hints that Jesus had in mind already what he would do but he wanted to test Philip. I guess Jesus wanted to see if Philip knew what He was capable of providing. In the last few years I have definitely felt like I have been in impossible situations, but it never occurred to me that it was on purpose, so that God could show his sufficiency. I try to be so self-sufficient all the time and then feel like a failure if I can't handle it. How freeing to think God doesn't ask us to carry the whole burden. He wants us to give it back to him.

Thinking back on our whole journey with Joseph, it is just so clear we absolutely could not have functioned and thrived without many, many hands helping us to do so. We were just exhausted, heartbroken, and couldn't think straight most of the time. There were so many times I thought, "This is too much. It's just too much for any parents to have to bear." But the thing is, we didn't have to bear it all on our own. So many people brought us meals, gifts, money, cards, emails, groceries, etc. And so many people just loved Joseph and spent time with him and made him laugh and brought him joy and happiness. It wasn't all dependent upon us, and I think that is one lesson God was teaching us. That life isn't meant to be lived alone. We need each other and He works through us to help one another.

He may put us in impossible situations. He may not fulfill our expectations. But He is good and He is God.

"To whom shall we go? You have the words of eternal life."

Happy 2009

2009-01-07T08:31:00.006-06:00

Hi blog friends! It has been a long time since I've written. I hope you all had a wonderful Christmas and New Years.

I cannot believe it is a new year again. This past year went by in such a blur that I barely got used to it being 2008 and now I have to get used to it being 2009. Has it really been 9 years since Y2K? Remember that little thing? Ha ha. A lot of people I know have mentioned that 2008 was such a horrible year and they are so glad it's a new year. I started thinking about that and realized that from the outside most people would probably say it was a horrible year for us, too. But as I pondered it I realized I just don't feel that way. I would never say it was a horrible year. We had some really trying times, some nightmarish things to walk through, but we also had some very dear and precious memories with Joseph-- and he was still with us in 2008. So in a way I think I didn't want to leave 2008, because that is the last year Joseph was with us.

Usually at the beginning of the year I have some goals or hopes for the new year. This year I'm having a hard time doing that. I am just having trouble getting excited about moving forward. I'm not completely stuck--I feel like I'm just resisting moving on. One thing I have been doing lately that I'd like to continue into the New Year is memorizing scripture. I am in the middle of Psalm 139 (at the suggestion of a blog friend, Angie) and I love that if I have some alone time in the car or doing errands that the truth of God's word comes into my head and reminds me of my true identity as a child of God. Oh, and I got some great stationery for Christmas so I also plan to write lots of hand-written letters to my long-distance friends (because, you know, without cute stationery it just couldn't be done :)).

We didn't send out Christmas cards this year. I ordered them and went to pick them up at Walmart, but when I looked at them I just felt sick. The whole way home I cried and then I decided I just couldn't send out a card without Joseph in it. So, I have about 85 Christmas cards on top of my fridge. Who knows, maybe I'll send them out in July just to be silly. But, thank you to everyone who still sent us a card. I make a little collage out of them after Christmas and it hangs on our wall all year:

While digging out Christmas decorations this year, my mom found a dress that used to be mine so I tried it on Holly and was so excited that it still fits her. I think it is the only article of clothing we kept from when I was little (after 3 trans-Atlantic moves things get lost or given away). Here is a picture of Holly in it:

We had a wonderful time on the cruise. It was just what the doctor ordered for us. A great diversion and lots of fun time with family. Holly got to sleep on a "loft" over our bed, which was big fun. After a couple of nights we read that children under 6 were not supposed to sleep in it. Oops. She did great, though.

Santa came aboard!

I hope and pray all of you have a very happy and healthy New Year.

Christmas is Here!!

2008-12-16T15:13:00.004-06:00

Well, almost. But judging from the toy aisle at Target, you would think it is tomorrow. I went in hopes of finding (another) princess phone for Holly for Christmas and do you believe I got the LAST one, at least at this Target. It was such a fun trip b/c I could feel the Christmas shopping fever but I wasn't stressed at all b/c I am pretty much finished shopping and was basically just browsing and hanging out in my favorite place. I do have to go by the "Cars" aisle every time to check if they new cars, which always brings a tear to my eye but also brings back some very happy Joseph memories.

The last couple of weeks have been really tough for me. I seem to go through phases where I feel like I'm fine followed by a period of intense sadness and missing him so much. I miss his energy and cheerfulness and passion for life, but I also just miss parenting him and taking care of him and watching him interact with Holly, taking on the role of older brother. And I'm sad for Holly that she won't have him looking out for her as she grows up.

We went to Atlanta this past weekend for my friend Beth's baby shower. We are so excited for them as they anticipate the arrival of their 3rd son in just a few weeks. Holly and Logan had so much fun playing together and it warmed my heart to see her racing around the house with cars and trucks again. It was my first time being back in Atlanta since last April and it was every bit as hard as I thought it would be. I was so nervous about going back that I thought, "It has to be easier than I'm imagining," but really it wasn't. Every part of that place holds so many memories for me and makes me miss Joseph all the more. We did really enjoy seeing old friends, though, and I was glad to get some good quality time with the people we love. Holly and I popped over to see some friends on Sunday and below is the picture we were able to catch:

This is what I love about toddlers (which used to drive me more crazy than anything). You just have to grab conversation when you can--in between breaking up toy wars, bringing kids potty, answering questions, etc. It makes quiet conversations at a coffee shop that much more precious and memorable (and rare). I am so grateful that God has blessed me with wonderful friends to go through motherhood with.

This weekend we leave for a cruise with Allen's family. It is our Christmas present from Mimi and Big Daddy. We are really looking forward to it, and Holly is excited about going on a "big boat." So, I think it will be a nice diversion for all of us and we will enjoy not cooking and just relaxing and spending some time together.

Wishing all of you a Merry Christmas and lots of fun family memories. And you better get to Target NOW if you want a princess phone. :)

Praying for Jackson today

2008-12-12T10:10:00.003-06:00

My friend Vivi in Atlanta recently told me her friend found out her little boy (18 months old) may have a brain tumor. They are not exactly sure what the mass is, but it was causing Jackson to have seizures. This morning he is in brain surgery to remove the mass. I am praying that they would be able to remove the mass safely, that it would be something low-grade/non life-threatening, and that Jackson would recover amazingly well with no damage to his brain or other bodily functions. Of course I'm also praying for his parents, that God would surround them with his peace. Please join me in praying for this family. Their website is: http://www.caringbridge.org/visit/jacksonwilliams
Thank you!!

Christmas is Coming!

2008-12-01T17:40:00.003-06:00

Now that it is officially December Christmas seems so close!! We put up our Christmas tree and lights, manger scene and light-up Santa. We don't usually go all-out for Christmas, but this year we have more lights and decorations than we ever have, and I have to say I love it. Holly also loves it, and every time she passes any kind of Christmas light or decoration she pauses and says, "It is sooo beauty-ful." We really don't have many Christmas traditions yet, but one that we started a few years ago was to decorate the tree listening to Bing Croby's Christmas Album, and then have Taco Soup and Egg Nog for dinner. This year it was even cold enough to feel like Christmas, and then as a bonus we got snow today!! (After I mocked Target for replacing the rake aisle with snow shovels, saying, "How much snow do we really get?")

Holly is still trying to figure out how Jesus, Santa, and Christmas all tie together. Today she was telling me she wanted a purple and green vacuum. Then she thought about it and said, "Maybe Christmas will get one for me?"

We had a really nice Thanksgiving, aside from the fact that I was sick most of the week. The only good thing about it was that it took my mind off missing Joseph. The really hard part for me was opening up our box of ornaments when we started decorating the tree. I hadn't realized how many ornaments we had for him. There were a couple I had made for him, then a couple with his picture inside, then a few that had all of our names on them. The one that really got me was one with a picture of when he was five months old and Mimi and I thought it would be so cute to put him inside a stocking. It really is a cute picture, but it just made me sad that we won't get to do silly things like that anymore.

I loved getting to spend time with my parents and siblings and their children. One night all my sisters and brothers and I went out to dinner without spouses, something I don't think we have ever done. We had a lot of fun, and I laughed more than I have in a long time. We talked about "Love Languages," of all things, which just made us all really bellyache as we tried to figure out Sam and David's.

Cousin Bella is staying in Nashville for a few days, and Holly loves having a little playmate around. Bella took a nap over here today and she and Holly slept in the same bed for 2 hours. I couldn't believe they did it. After nap I got them a snack, then Holly got them both a box of raisins (one of her and Joseph's favorite snacks). Bella told her that she didn't like raisins and Holly just couldn't believe it. "Just try them! You DO like them." She was practically force-feeding her before I told her that there are people in the world who don't like raisins, and Bella didn't have to eat them. I just thought it was hilarious that Holly was trying to convince her that she really did like them. "They're juicy and sweet!" she said. I can't bear to tell her that they aren't my favorite snack either.

I hope all of you are having fun decorating for Christmas and shopping for or making gifts. A friend of mine dropped over an Advent Calendar today, the kind with the chocolate behind each day (Thanks, Katie!!). That was one of my favorite things to do as a child, so I'm excited to start doing it with Holly. The girl has a serious sweet tooth like her mommy, so I'm sure she will love it. Hope you all are enjoying some fun traditions, too. Stay warm and enjoy those Christmas lights!

This week last year

2008-11-24T19:35:00.002-06:00

Well, it has been a year now since we found out Joseph had a brain tumor. It was this week last year, Thanksgiving was over and we had come home to Atlanta. All week Joseph had this strange head tilt that kind of came and went. He was always so quirky that I just attributed it to him being silly or something. I honestly was not worried one bit about it. He also had been a bit off balance, but that also didn't worry me since he was always a little clumsy. I could tell Allen was worried but was trying not to show it. He had checked his eyes to see if he had a reflex and his left eye did not blink at all when he flicked his finger in front of it. When he showed me that I became extremely worried. We took him to the pediatrician who was not sure what was going on, but referred me to an opthamologist. I was planning to bring him there on Thursday. But on Tuesday night Allen came home from work early (he was supposed to work all night at the hospital) and said his attending doctor recommended we bring Joseph in first thing the next morning for an MRI. I was pretty worried at this point, but Joseph was so happy and normal in so many other ways that I just couldn't comprehend that anything serious could be wrong.

That afternoon, before Allen went in to work, I had gone to Starbucks (something I did regularly whenever Allen was home and I needed a breather) and called my sister while I had some coffee. I was relaying to her what was going on and that we were going to take Joseph to the opthamologist. At this point I don't think we had decided to take him for an MRI. Anyway, about halfway through my conversation, a sweet lady who had been sitting beside me got up to leave. As she walked by, she dropped a little note onto the table and smiled at me. It read "I will be praying for your son." I couldn't believe it. It stunned me that I had been speaking that loudly (oops) for her to hear everything, and that what I had said prompted her to pray. This was my first inkling that something was wrong. I just felt it.

The next morning, we woke up the kids at 6:00 and headed to the E.R. While Joseph was in getting his MRI, I received a phone call from our dear friend B.J., who was calling to see if I would check in on his wife, who had recently lost her baby. I wasn't going to tell anyone we were in the hospital until we knew what was going on, but I felt like I needed to explain why I couldn't call to check on my dear friend who needed me. I think he was on his way to work, but he said, "I'm coming right over there. I know Allen is going to tell me not to, but tell him I'm coming." I realized at that point how scared I was, because I really was grateful he was coming to offer us some moral support. I had a feeling our world was about to come crumbling down and neither of us were prepared for it. I remember both Allen and I saying, "But it could be nothing; We'd hate for you to come all the way over here for no reason." But, God must have given him insight as well, because he came right over and waited with us.

When they wheeled Joseph back into our little waiting room, he was still asleep. I remember feeling like I might be sick. Then the doctor came in, who happened to be a man whose child Allen had taught when he taught 5th grade. We had house/babysat for their family when they were out of town and they had gone to our church for a while. We were so thankful to have someone we knew and trusted to give us this news. I still remember it as though I was watching someone else. The words were registering in my head; I could comprehend what he was saying--it just didn't seem real. How could there be a large mass in Joseph's head? How could it "probably be cancer"? How did they know that? I remember saying, "But, he's so little." Cancer happened to older people, not to children, not to my child. Then a few moments later I went outside to get some fresh air and cry.

Those few days, while horrific, were also such encouraging and sweet days. We could never have expected this news, but we also could never have expected the outpouring of love we received from friends and family and the community at Emory. Joseph got balloons and stickers, toys, treats, McDonald's, Moe's, cars, trains, all his favorite things. I still remember when all the aunts and uncles and grandparents showed up at his hospital room that he probably felt like he was the most special child in the world. Everyone was there to see him and love him and make sure he had everything he needed. We are so thankful for all the many, many people who served us and loved us and supported us during that critical week (and the ensuing months).

I recently read an article about a family in Ireland who lost their son to a brain tumor. They had no indication that he was seriously ill. They thought he had gotten a stomach bug, and after a few days of him not getting better they took him into the hospital. He went into a coma that day and died from the tumor that had grown so big without their knowledge. After reading that article, I realized how that could have been our story. If Allen had not noticed the serious issues with Joseph and if the doctors at Emory had not taken him seriously and gotten us in there quickly, we could have bounced around from opthamologist to neurologist before anyone thought it might be a brain tumor. There are so many people I have met at St. Jude's who said it took them months to figure out their child had cancer. I think in our case we wouldn't have had months and it would have been too late. So, I'm so thankful the Lord gave us 9 more months with him and that we got to see him grow up some more, really enjoy life and really enjoy spending time with grandparents and cousins and our family that loved him so much.

So, this Thanksgiving I'm thankful for my family I have here with me. I'm thankful for the four wonderful years of life I got to spend with Joseph and all the wonderful and special memories we have with him. I'm also thankful for the many ways God supported us and provided for us throughout this journey. I can honestly say I'm not scared of much anymore. Well, I guess I don't fear things as much because I feel like if we can get through this, then we can probably get through other things. To say I miss him just doesn't cover it. But his life has influenced me and Allen and Holly, and our family will always include Joseph. He is always on our minds and in our conversation and we regularly quote "Josephisms." Holly still imitates him and wants to be like him. I hope that never changes.

I'm still processing everything that has happened. One thing I'm learning, though, is that it really is best to be thankful for what you have. It can always go away. I could be bitter and angry that I don't have Joseph anymore, but what would that do for anyone? I have Holly, a wonderful husband, a sweet new doggy, an absolutely amazing family, and the sweetest friends in the world. I really am blessed. I think we all are in different ways. We just don't always recognize it.

What We've Been Up To

2008-11-09T21:17:00.007-06:00

We have a new member of our family, a cute little beagle we have named Kellogg. My mom found her on the side of the road on the way to dropping David to school. It looked like she hadn't eaten in weeks and had no collar or tag, so my mom had pity on her and took her home. She then called me to tell me she had found Holly's dog. A flea-ridden half-starved dog. Just what we always dreamed of. :) But then I met her and she was the sweetest little dog, very scared but really sweet and loving. When I looked at her, I thought, "This is our dog, and her name is Kellogg." Don't ask me why.

We have been contemplating getting a dog for the last few months, so this seemed like the perfect opportunity. We took her to the vet and got her fleas and worms (uggh) taken care of, so now she is fattening up and looking healthier every day. If only we could get her to pee outside, she would be the perfect dog. She is really patient with Holly treating her like a baby doll and so far has been extremely gentle. And I think Holly gets competitive with her and gets jealous if I'm giving her too much attention. It is really funny. They have even started to fight over toys. Holly has a care bear that talks, and Kellogg is either scared or very excited by it, but still loves it. Well, we had a big fuss over it tonight and we had to resort to "taking turns" between the dog and Holly. Oh boy. It's good for Holly to have a little playmate, though, and she absolutely adores her little puppy (who is actually 3 yrs. old).

Speaking of potty training (the dog), I have decided to add to the craziness and try to potty train Holly once and for all. This is the week. I am a big wimp and basically put off potty training until they are practically asking to be potty trained. Holly has been asking why she can't wear the underwear that has been sitting in her drawers for months now. She can definitely use the potty and has been for a while, but things have been so crazy, it was just the last thing I wanted to do. But now it's time (I think). She asked again tonight if she could start wearing underwear so we are going to really focus on it this week.

Holly has been taking a little "Mommy and Me" gymnastics class once a week and has just been loving it. Her favorite thing is the trampoline, but this last week she got to swing on the rope and she got really excited about that. She is good at all the activities, but she has exceptional arm strength, so hanging on bars and ropes are her forte. This is her waiting for her turn to swing on the rope. You can see the glee.

This is Halloween. We had a really sweet flower costume for her but all she wanted to wear were Joseph's Thomas pajamas. Last year Joseph was Spiderman (in pajamas) so I think she may have wanted to be like him. She looked adorable either way and people still gave her candy even if they weren't too impressed with the costume. :) Here is a picture from last year's Halloween. You can see the similarities:

How we missed him this Halloween. It just wasn't the same without him there to lead us in running from door to door. My heart still wrestles with believing he is really gone. I know Holly is struggling to grasp it. She is finally telling us that she misses him, and if I say I miss him too, she will quickly say, "Me, too." We are so thankful for Holly. I don't know what I would do if I didn't have her little voice and face to light up my day. She definitely has her "terrible two" moments and days, but I'm even thankful I have her here to drive me crazy. It is a privilege to be able to raise one of God's creations. I just pray constantly that He will give me wisdom and grace to teach her and guide her the way I should.

Big Success!

2008-11-04T19:45:00.005-06:00

Kate Etue made these delicious, creative pies--for Obama and McCainMerridees donated 15 pies, which got snatched up quickly!
Some friends stopped by for cupcakesThis sweet girl sold her Halloween candy so she could make a donation. Yes, she SOLD her Halloween candy for childhood cancer research.
Just a sampling of the many, many goodies that were lovingly baked for this sale.

This handsome guy stopped by to set up and break down tables and man the table.

Special thanks to Katy, Amanda, and Em'ly, who mailed goodies from afar. Thanks Mom, Kathy, Jennifer, Katie, and Kellie for helping with organizing and finding a location. And special thanks to Ruthie, Penny, Katie, Jennifer, and my hubby for manning the table and providing moral support. We had so many people stop by and were really shocked at how much we were able to raise for childhood cancer research. Thank you to everyone who contributed in any way, whether it was baking or coming by to get some goodies. I really had a lot of fun doing this. The organization, Cookies For Kids Cancer, was hoping to have 50 bake sales in 50 states on election day, so we were able to provide the Tennessee one. I hope that all of us raised lots of money to help with research for childhood cancer. I think I can request that our funds go directly to brain tumor research, which would be awesome!

It was a really amazing day. God gave us a perfect day, sunny and warm (I even got sunburned in November), and a beautiful location in Westhaven. We got to meet lots of people and be a part of the fun of election day, too.

Bake Sale

2008-10-27T20:49:00.002-05:00

We have a location for our bake sale!! It will be in Westhaven neighborhood in Franklin on election day, Tuesday November 4th. We will be there from 10-2 and possibly at 5:00 again if we still have goodies. Holly and I had fun shopping in Michaels for some fun boxes and baggies for goodies (and we might have left with some candy corn and birthday candles that weren't necessarily on the list). Holly has been slightly fixated on her birthday, which is still several months away, and we have daily conversations on what the theme will be and what we will eat, etc. So, the birthday candles were for her birthday cake that I won't be making until, oh, February. And come to think of it, I think we also have princess plates that we bought in August, also for her birthday.

We have been having a nice few weeks with lots of visitors. Our friends Margaret and Matthew and Sarah came in for a visit from Atlanta; cousin Will was here, then Deacon; then this last weekend all my family came in town to celebrate my Dad's sixtieth birthday. As Sam put it, we are all thankful for sixty years of Billy Taaffe. I think Joseph inherited my Dad's passion for life and love of people, two things that made Joseph so special. We love you, Daddo!

We have been doing okay...this month last year is etched in my memory because it was the month before everything starting falling apart. I can still remember taking the kids to a pumpkin farm with the Slotkins, our playgroup Halloween party, the nursing home to trick or treat, and just enjoying the fall weather. We have some great pictures and great memories, but it makes this season bittersweet. I guess this is the first "holiday" we will have without him, the first of several in the next few months.

The first time we took Joseph trick-or-treating (he had just turned 2), we started out walking through a neighborhood in a little parade with lots of other children and parents. When the parade finished he thought that was it. But when we starting going up to doors and getting candy, his face had that blissfully shocked look and he could not believe people were just giving him candy. He started racing from door to door. It is the fastest we had ever seen him move. At first, he thought he had to eat each piece as he received it, but we finally got him to put it in his pumpkin and save it for later. The next day, he woke up and wanted to do it again that night. He didn't understand why we couldn't just do this every day. I had fun imagining all of us dressing up and walking around saying "trick or treat!" on a random night in November. I think people might have had pity on us and given us some leftover candy, right?

So, we are still missing him and thinking about him a lot. Last week I was having a really hard week and I realized how powerless I am to make myself feel better or even do the things that usually make me feel better (spending time with God, reading, etc.). I started thinking about how God wants us to come to Him as we are, with all of our pain and hurts, not as we think we ought to be. That is my biggest struggle. I really want to come to God and say "Look, aren't you proud of me?" But I have been feeling so un-proud of myself and just down in the dumps that I really can't do that anyway. So, I am trying to invite God into my pain and painful thoughts. If I start to go down a road that I know will end in me sobbing, I just ask God to redeem this sobbing. To take my tears and somehow make them beautiful or healing. I know that sorrow is not wrong, but I have a feeling that if God is not redeeming it it can easily become bitterness or resentfulness, which I really don't want. It even helps in thinking about some of the more painful times, like in the hospital after surgeries and thinking about times when Joseph just wasn't feeling well. I have been asking God to travel back with me in those thoughts and not let them become a source of guilt or depression. So, if you think of it, please join me in praying that.

I hope you all are getting to enjoy some of this fall weather. There is something so cheerful about a pumpkin. We have two big pumpkins on our front porch and every time I drive up and see them I just smile (thanks, Nana!). Happy Fall, everyone. Drink lots of cocoa and don't forget to come by our bake sale for some yummy desserts next Tuesday.

Normal Life

2008-10-15T23:06:00.006-05:00

I have to confess something to you. I'm a little more uncomfortable with this blog now because all we have to write about is how we are doing, not about how Joseph is doing. It was originally set up to update family and friends on Joseph's condition, but it became a place to write to friends and receive encouragement and support. This blog became our best friend, in a very odd way. But now that Joseph is gone I don't have the comfort of writing about how he is doing, what we are doing together, upcoming appointments, etc. Life seems very bland now, like anything that is going on is not worthy of writing on the blog about. Life is back to "normal," but a very strange normal. It became normal to have to administer medicine several times a day, to be constantly on the alert, to have doctors' appointments schedule more often than we enjoyed. And we felt we were living on borrowed time so every day was a great celebration that we had another day with Joe. Now our normal is still not normal, because we now have only one child in our house, we are all of a sudden in a new city (which somehow I didn't process until now), and we had sorta gotten used to the other crazy normal.
Every day I sort of expect things to be different--like maybe today I won't be as sad, maybe this was all a bad dream and he will come back and things can go back to normal, maybe it won't feel so empty and wrong everywhere I go. Joseph was so much a part of me--he formed me as a mother, and he was always a part of my conversation with others, a part of what made our family "our family." Now it just feels like we are waiting. Hoping that something sudden and happy and exciting will happen, something to make this sadness and awful grief go away. I know it will be with me for a long time, but I feel like I should be acting like a normal person and I should be able to go to the grocery store without tearing up when I see his favorite juice boxes or the toy aisle where we desperately searched for "choo choos." I have this crazy urge to tell random people that I have a son and he died and I'm not just a normal person having a normal day.
I've never experienced missing someone this much, either. Allen and I took a week-long vacation right before he started residency and the grandparents graciously watched Holly and Joseph. It seemed like a great idea, but by the end of the week I missed them so much it hurt. It just didn't seem right to be away from them and I couldn't truly enjoy the trip b/c I wished we had brought them or had made the trip a little shorter or something. It was a wonderful time with hubbie but I think that trip made me realize how much a part of me the children were. It wasn't as easy to "check out" and just leave them behind as I had thought. Anyway, this feeling feels like that times a thousand. All of the knowing that he is in heaven and in a better place doesn't make this feeling go away. It's definitely a comfort and I am thankful he is in the best and happiest place he could be, but like I said earlier I just want to be with him and be his mommy again.
I read this verse today and it reminded me that God can do the impossible:
"and provide for those who grieve in Zion—
to bestow on them a crown of beauty
instead of ashes,
the oil of gladness
instead of mourning,
and a garment of praise
instead of a spirit of despair.
They will be called oaks of righteousness,
a planting of the LORD
for the display of his splendor."
I am praying that God would make this a reality in our lives and that we wouldn't let the sadness and grief overwhelm us completely. Thanks so much for your faithfulness in caring for our family and for praying for us throughout this whole journey.
Also, THANK YOU to everyone who has emailed me to offer baked goods for the bake sale. I am totally overwhelmed with all the people who have responded with such enthusiasm. I even have two kind women who are shipping goodies from across the country! And our friends over at Veggie Tales are contributing some DVDs of "The Ballad of Little Joe" (which was made a few years ago and is about facing hardship). Still working on a location but will post that once we have it...

Cookies for Kids with Cancer

2008-10-13T21:52:00.006-05:00

I have always loved bake sales. From the time I was a wee one, just the sight of a pretty table filled with all kinds of sweet sugary goodness set my heart a-flutter. In fact, one of the only pictures we have of me as a toddler (I am the third of five children--need I explain?) is one where I am standing in front a table of goodies (at a wedding, maybe?) with my finger reaching for some icing or treat.
So, when I was asked if I'd be interested in hosting a bake sale for "cookies for kids cancer" I was very eager to help out. Not only will we be raising money to support childhood cancer research, but we will all get to enjoy a treat on election day. So, the bake sale will be on November 4, election day, and the location is yet to be determined. Here is the website where you can read some really interesting statistics and learn more about this great organization:
http://www.cookiesforkidscancer.org
I'm going to need some help filling our table with cakes, pies, cupcakes, cookies, muffins, and Joseph's absolute favorite--brownies!!, so if anyone out there would like to bake something to contribute to the sale, please email me. I'm very excited about this, and I know Joseph would be too. I think he and I were tied on how much we liked sweets.
Once we know where we are going to be able to have the bake sale, I'd like to invite all of you to come by and sample some goodies while we participate in electing our new president.
On a much sadder note, there is another little boy who has been battling a brain tumor for just over two years. He is such a sweet, brave boy named Aidan, and he will likely be going home to meet his Savior and play with Joseph in the next week or so. We are really saddened by this as we have grown to love him as we've kept up with his blog. Please pray for his family or sign their guestbook to let them know you care: http://www.whynotaidan.com/
All of your notes and comments were so encouraging to us in those final days with Joseph and I know they would appreciate an encouraging note. Thank you!

A good trip

2008-10-07T15:23:00.006-05:00

We had a really nice time at the beach. We are so thankful the Moessners agreed to come with us, as we loved the company and Holly loved having little friends to play with. There were moments of sadness for me, but overall I just enjoyed the beautiful weather, gorgeous sunsets, and having the beach practically all to ourselves. We also played my favorite game "Boggle" almost every night and stayed really late like we were in college again. What a blessing to have good friends!

The unexpected hard part for me has been coming home. It was really emotional for me coming back into the house, because the last time we all returned from a trip was our last trip to Memphis, the day Joseph died. All those emotions just rushed back and in some strange way I feel like I'm experiencing those first days all over again.

I've been reading a couple of books on grief, and both of them talk about not being able to focus on anything and feeling tired all the time from expending so much emotional energy, which I could totally relate to. I feel it takes all my energy when I cry or am just feeling sad, but also to try to take a deep breath and move on with the day. Normal tasks are no longer easy and normal.

One man also talked about a real physical sensation of having cement blocks on your shoulders. I couldn't quite articulate that to myself or anyone else, but that is exactly how I feel. He also said he felt like he was constantly breathing very shallowly, and I also feel that, and find myself taking deep breaths every now and then after I realize I haven't been breathing normally. I never knew grief could affect you so much physically.

Holly is doing well and continues to tell us she is fine and doesn't miss Joe P. We know she does, but this is her typical answer. The one manifestation of her grief I see is that she has become very attached to me, which is fine. She started gymnastics class yesterday and absolutely loved it. I was so proud of her as she jumped on the trampoline and did her "bear walk" along the parallel bars. I think her favorite part was playing with the parachute at the end and getting to run underneath it.

Oh, and I mentioned in the previous post that it would be hard to see all the places at the beach where Joseph used to have fun. One of those places was the little fountain near all the restaurants in the village; Joseph used to jump around in it while we waited for our table to be ready. Well, as we walked past it last week I noticed that it was broken in the three places and there was an orange cone on top, which seemed very appropriate to me. If Joe P. can't play in it, then it should just be broken (so selfless of me, I know :)).

So, overall I think we are doing okay. Allen has been writing lots of beautiful songs out of his grief, which helps ease my sorrow too. I feel like God has been meeting me in nature--through being outdoors and just seeing his creation and beauty. In some situations words just are not enough, but I do feel He speaks very loudly through creation. In the song "Shout to the Lord" there is a verse that says "Mountains bow down and the seas will roar at the sound of Your Name." The Bible also personifies nature a lot, and I have never felt that nature truly does glorify and worship God as much as I do know. It is a very non-intrusive and gentle way that God is reminding me that He is here and that He loves me.

Off to the beach

2008-09-26T22:36:00.005-05:00

Well, tomorrow we embark on our first family trip without Joseph. On one hand we are really excited and thankful we are able to go the beautiful beach and relax and have a change of scenery, but I am also fearful that everywhere we go will remind me of him and that it will just be sad being there. We have taken him there since he was 3 months old and we have many happy memories and favorite places we shared with him. I know it won't feel right going to the playground without him, walking past the fountain at the village without him splashing in it, riding in the tram without his indescribable glee. There is just no way around this sadness. I wish we could avoid it, push it away, not let it consume us, but it's just sad. That is all there is to it.

We are bringing some dear friends with us who also have children, so we are really looking forward to that. We told Holly, "Guess who will be at the beach with us??" and her little face lit up with hope and she said, "Joe P.?" Sweet Holly. She talks about Joseph all the time and has been expressing more that she wants Joseph to live back in our house again. I think she is realizing that he really isn't coming back. She is otherwise doing very well, and I am glad she is telling us her feelings and that she feels comfortable talking about him. But some of her sincere and innocent questions just break my heart into pieces.

She recently graduated from her crib to a "big girl bed" which she was beyond excited about. It's hard for me to believe that her next birthday will be number 3. She has always been the baby, but I have to get used to the fact that she is now the oldest and she is getting bigger. In fact, she is so big she has decided to ask God for her own baby to keep in her house (a pink baby--meaning a girl). She is really into playing baby dolls and has been for a long time, so I think she now thinks she's ready for the real thing. She is really nurturing and loves to take care of everyone, so I have no doubt that she will one day be an amazing mommy. But, here are some pictures of her reveling in her big girlness:

"Go CPA!!"

"I am way too cool for my little crib!"

"Ta-Da!! Wild Flowers!"

On the wild animal front, we have not seen any more snakes but we did have a skunk visit our air conditioning duct, so we now have a permanent skunk smell in our house. We haven't been using the air conditioning at all and have candles burning most of the time, so now the smell is tolerable. Always an adventure 'round these parts. We also have a squirrel and a cat that roam around our house, often peering in our windows forlornly. I'll let you know if they do anything exciting.

We are really looking forward to our vacation. Please pray that we would have a safe and fun trip and that God would give us peace and strength and comfort as we miss our little Joe P. God has been so good to us throughout this journey and we are so grateful for all the love and support so many of you have shown us. Thank you for being such great friends to us. We love you!

Victory in Death

2008-09-20T09:09:00.003-05:00

"This website has shown me there is a lot of goodness in this world."

An anonymous person wrote this comment on our blog the other day. Remember, this blog is the story of a child who battled brain cancer for 9 months, only to die the day after his fourth birthday. And this person sees that there is a lot of goodness in this world from reading about this? How can that be?

"Where, O death, is your victory? Where, O death, is your sting?" The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ." (1 Cor. 15: 55-57)

With God, everything is backwards. The reason is because of Jesus' death and his victory through death. We tend to think of death as the end, the final failure, the ultimate evil especially in a child's life. I know when Jesus died, his faithful followers couldn't believe it. THIS was the Messiah, the man who was supposed to save them and use His power to rescue them. But he died a gruesome death on a cross like any murderer or thief and left us. There was no miraculous rescue. He didn't call down fire from heaven to destroy his persecutors. What kind of victory is that? If that had been the end of the story, it would have been a bit disappointing. But the victory comes in on the third day. He came back. He was alive. He conquered death so that it wouldn't conquer us.

A friend of mine shared this quote with me from a book entitled My God and My All by Elizabeth Gandse:

"It is never the beginning of the story to say a child is born, nor is it the end to say a man has died, for long preparation leads up to every birth, and a death leaves behind it a power for good or evil that works on in the world for longer than the span of life from which it grew."

I think of Jesus' death and the impact it has had on the world the last 2000 years or so. We now have this incredible power for good because of his death and his Holy Spirit that he left in his stead. We would not have his Holy Spirit if he hadn't left us. We wouldn't have power over sin, fellowship with God and intimacy with Him, and the assurance of ultimate pardon. No one can take those privileges away because they are sealed with the blood of Jesus. There is also unbelievable evil, but we now have hope that this is not the end of the story. Jesus can redeem it, and he will redeem it, and he is redeeming it. (And he uses us to redeem it!)

One of the reasons we named Joseph "Joseph" was because of the Old Testament character (see Genesis 37-50). He is an amazing role model (not all O.T. "heroes" are) because of his response to suffering and injustice. His brothers basically kidnapped him and sold him into slavery and lied to their father, saying he was eaten by a wild beast. Years later, after a lot of suffering and more injustice, Joseph is given great power and authority by pharaoh because of his ability to interpret dreams. There is a great famine in the land and his brothers come to him (not knowing it is Joseph) to get some food. After some more lies from his brothers and the death of his father, his brothers are worried that they have finally put Joseph's patience to the limit. His response to them is just amazing:

But Joseph said to them, "Don't be afraid. Am I in the place of God? You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives."
He could see through his own pain and suffering and separation from loved ones to the truth that it was God who put him where he was to work a greater good than his own happiness. Such amazing humility and trust in God!

I remember thinking what a gift it would be to have a child who grew to be a man of this kind of character. It turns out our Joseph didn't live to be a man. But in his short life I believe he showed many people the goodness of God and the goodness we are all capable of because of Jesus. The name Joseph means "the Lord will increase," and I just pray and hope that our Joseph's death will leave behind him an incredible power for good that will increase God's family and the number of people who trust in Him.

Snakes and other shenanigans

2008-09-18T14:49:00.010-05:00

The newest member of our family

My hero

Apparently, snake-handling has now been added to my rapidly expanding repertoire as a mom. So, I was performing the glamorous and much sought-after task of unloading the dishwasher, keenly concentrating on matching the appropriate sippy cup lid to its proper cup. Feeling the satisfying exhilaration of completing this task, I then move on to picking up random toys that end up on the kitchen floor---today it was a toy snake. The tiny thought crossed my mind that we haven't played with many toy snakes lately as they were usually more Joseph's cup of tea than Holly's, but I reach to pick it up anyway. This is where the excitement begins. It doesn't FEEL like a toy snake. In fact, it doesn't really look like the fluorescent green toy snake we own. I quickly toss it back on the ground, hoping I'm being paranoid, then watch it slither over to my cabinet to try to hide, as I proceed to scream, hyperventilate, scream, fly into the next room to hide in a corner, scream.

This is my typical reaction when faced with any outdoor creature in my house---whether it be a roach, spider, bee, etc., so Allen strolls into the kitchen to save the day and see what has gotten me so worked up. (Thank you, Lord, that Allen was home!) When he sees that it is an actual SNAKE, he skips the screaming and shaking and puts a bowl over it to keep it from snuggling into one of our beds or something (while I cheer him on from the corner and caution him wildly to keep it away from me). So, after a few minutes of getting it trapped between a glass bowl and a cookie sheet, my hero takes it outside to go play with its friends.

My heart is still recovering from beating so fast. I'm not sure what kind of snake it was, but it was very small. It was either a juvenile black rat snake or a baby rattle snake. Please someone tell me this was not a rattlesnake. We looked up pictures on the Internet and it did look frighteningly similar to a rattlesnake.

I really think I handled this whole situation so well that some of you may want me to come over and help you with unwanted pests (please note the sarcasm). I'm just so glad Allen was here. Holly may have been permanently scarred for life if she had to watch me try to kill the snake (which was the only thing I could think to do).

In less exciting news, Holly is doing well. Many of you have kindly asked how she is doing, and we can honestly say she has adjusted to our new life surprisingly well. I know she misses her playmate, but she seems to really understand that Joseph lives with Jesus now and that he is up in heaven, playing and laughing with no more boo-boos. She definitely wants us to play with her more, whereas before she would either play with Joseph or entertain herself for a long time without us. We've been getting together with some of her little friends, which she loves, and Winnie Kate is visiting this weekend which is the best news her little ears could ever hear.

We, on the other hand, are missing Joseph a lot and feeling his absence more strongly as time goes on. In my head I know that he is happy, whole, fully alive and with Jesus, but my heart just wants to see his little belly, his joyful eyes, hear his hearty laugh, and of course hold his little hand. Today is 4 weeks since he died, but to me it feels like it just happened. It is still so fresh to me, the wound is still raw, and I don't feel like I've "moved on" at all. But, I'm okay with that and we are trying to let ourselves grieve and heal in our own time. I have heard that there is no timeline for grief and we are definitely experiencing that. It is also unpredictable. I can be doing fine, focusing on something else, then I see a picture of him and I just can't help but cry uncontrollably. I really don't like that--being out of control of my emotions, but I suppose there is no way around it.

We don't need anything, just continued prayers for strength and endurance and wisdom. Thank you so much for everyone who has sent us gift cards, letters, notes, and meals. We have been getting the most delicious meals each week, and it is so nice to not have to worry about it. Also, thank you to everyone who has donated to St. Jude or Rally Across America. I love getting those cards in the mail, telling us someone else has given in Joseph's honor. What a blessing!

I have recently come across the blog of a lady in Oregon dealing with end-stage renal failure (Kelli). Her link is on the right on our blog. My heart goes out to her so much, as she is going through this hard trial without much help or support. We could not have gotten through these last 10 months without the unbelievable help and support of our family and friends. After reading her story, if you would like to help her by sending her family a giftcard or money, please email me, and I will give you her contact information. Thanks!

God of the Little Things

2008-09-13T11:39:00.001-05:00

It is hard to believe that it has been three weeks since Joseph left us. It feels like yesterday and at the same time like it was years ago. So much has changed. I decided to make a very small list of the ways God was there for us in the last few days in how the little decisions that we made correctly turned out to be huge. He is the God of the little things.

So here goes:

1. We brought Holly with us to Memphis: this was her first return trip since we moved out of the Barr's house in Feb. Every other time that we came for checkups and scans we left her with grandparents. Gillian and I were both growing concerned that she was beginning to feel left out and forgotten. Also Joseph specifically asked for her to go this time which was unusual. She got to be there with him for his last day of conciousness and although it was a little hectic getting her back here (thanks uncle Matt) it was such a blessing for us and for Joe P that she was there on his birthday.

2. We decided to stay with the Barrs: usually when we returned to Memphis we wanted to stay in the St. Jude hotel (the Grizzly House) because it was close and his appointment were always in the morning. Also we wanted some privacy to be able to discuss things if needed. But Jennifer and Matt were living in Matt's dad's house because of a catastrophic hot water heater explosion in their house which meant that they had lots of room for all of us. So we decided that it would be easier to stay with them even though they were thirty minutes from St. Jude. So we got the blessing of being with family after hearing the horrible news, and we got to celebrate his birthday with cousin WK who Joseph loves so much. We also got to see the dogs and one of the last pictures we took of Joseph was him snuggling on the couch with millie his favorite dog. It also helped us to make our quick exit from Memphis and allowed Jennifer to drive Gill, Joe and me home. If I had been driving on that trip, we would have most likely crashed.

3. I think this is the biggest; we changed one of his appointments: This is going to take a while to explain, so bear with me. I had grown so angry over the course of our time in and out of St. Jude at how long we had to wait for everything. It is an amazing place, but there is so much waiting for everything that it eventually grinds on you. They also schedule appointments in a seemingly random way. When we arrived we got his schedule for the week. It had appointments from Tuesday through Thursday. On Thursday we only had one appointment and it was with the Quality of life team. We considered skipping it since we didn't really know what it was, but I decided to see if they could change it so we could leave on Wednesday. Normally they are never able to change appointments because of all the patients they have, but she was able to schedule it Wednesday after his MRI. After I got it changed, I told Gillian and she reminded me that we had to be there Thursday and Friday anyway to start the new chemo, but I had forgotten since it wasn't yet on the schedule. Anyways, we just left it for Wednesday. So we met with a doctor from the Quality of Life team while Joseph was waking up from his MRI. The conversation was about his last days and was meant to get us thinking about what we wanted. We decided that hospice care would be best and we spent a lot of time talking about everything including what those last days would look like for him and for us. It was a great meeting and it really helped us deal with a lot of issues. At the end of the meeting he started to call around and was about to get us enrolled in the hospice care. I stopped him and said that we're not there yet. We're about to start a new chemo and we don't even know what this new MRI showed yet. Then he asked us if he could go look at it now and we emphatically said yes. Normally when he had MRIs we wouldn't hear the results until his next appointment, usually on the next day. Anyways, he came back the terrible news and we immediately got him into a hospice care. Joseph went into a coma that night and died the following day. If we had not changed that appointment, we probably would not have heard about his MRI that day and would have shown up the next day with him in a coma and his last hours would be in a hospital far away from his extended family. Instead we got to rush home and everyone got to see him and talk to him one last time.

4. Joseph made it back to Franklin: We decided to spend that night in Memphis and leave for home the next morning. On the morning he died, a hospice nurse in Memphis came to see him and told us that he didn't have very long. We didn't even know that he had slipped into a coma overnight. He had been awake from around 1-3 that morning and was talking and eating and refusing to go back to sleep. Deep down I doubted that the doctors would be able to correctly say that he only had a few days left and thought that maybe we'd have a couple of weeks, so I guess I didn't think that the end would come so quickly. When the nurse told us that he had hours, we decided to sprint home to be with everyone. Jennifer drove Gillian, Joe and me while Matt had the two girls in another car. Gillian and I held Joseph the whole time in the back seat. It was an awful drive. On two occasions he stopped breathing for over a minute and I couldn't feel a pulse and we thought he had gone. But then he would gasp and start breathing and pumping blood again. That was so painful to go through more than once, but I had been praying all morning that he would make it back home. It was like he was refusing to quit; we kept telling him that Mimi and Nana and everyone else was waiting for him back at the house with lots more birthday presents. Anyways, we made it home and was able to be with everyone again. It was totally an answer to prayer.

So there's a short list of the little ways God was with us in the end. It's amazing how so many small decisions turn out to be really big ones. He has also been with us in the big decisions and prayer requests over the past year providing physical and spiritual needs, but I can't stop thinking about how things could have turned out had He not been there for us at the end. As horrible as it all was, it was the best it could have been.

A story and an article

2008-09-11T22:39:00.005-05:00

Thank you so much to all of you who have sent me funny and sweet memories of Joseph. The following is a story my friend Christy wrote down that I just thought was so hilarious.

Christy’s Soda

Joseph was probably around 17 months old and we decided to take a trip to Target so that his mommy could sit down for 2 seconds together (she was about 8 1/2 months pregnant with Holly). Anywhere else and Joseph would be running at approximately 62 mph, but place him in a Target shopping cart and he'd sit there wide-eyed as long as you'd stroll him around. It was magical. So here we are, taking in the Home Improvement section, and he asks me for a sip of my Dr. Pepper. (Enter my savvy.) I say, "Sure, here you go!" (Reminder: I had not had children of my own.) Joseph takes a nice big gulp, then gives me a look of confusion and horror and delight. Priceless expression that surprised me and made me giggle. I thought he'd love it, and it hadn't occurred to me that perhaps Allen and Gillian didn't give their one-year-old carbonated caffeinated beverages on a regular basis. Joseph ponders this experience for a moment, then asks for another sip. As I offer my straw, he leans in tentatively, then jerks back with a huge grin, shaking his head emphatically. Total fake out! Fantastic! I adore a kid with a sense of humor. We played this game for another 5 minutes or so, then eventually we headed back to mommy. As I was relaying all this to Gillian later, she just laughed and said, "Yeah, he's never had soda before!" Oh.

And now for something more serious...

Anissa's article

I read an online article recently by a lady named Anissa. Her daughter has leukemia and she wrote about what she has been through. At the end of her article she wrote some tips about how to help those who are dealing with serious illness. Some of the things I never would have thought of--like that someone might feel guilty that it wasn't them.
We have been so completely blessed and do not need a thing. We have meals coming for a long time, plenty of help, love, etc. We feel very blessed that we feel like everyone has anticipated what we need and done more than we could ever imagine. Thank you!!

Here is a link to her article: (It's the second post down)
http://rocksinmydryer.typepad.com/shannon/

Brave and Strong

2008-09-08T14:08:00.003-05:00

Many people have told us how brave and strong we have been as parents during this whole journey with Joseph. Thank you for that compliment, but I have to tell you that Joseph made us want to be brave and strong. We were not in denial; we knew our time was short and we wanted to make lots of happy and fun memories for him (and for us). He did not know his time on earth was short but he certainly loved life and didn't see any reason to not have fun all the time...so that really helped us. I also felt this important responsibility and focus, and nothing else mattered in the world.

I have to confess something to you. I have not always seen the role of "mother" as the most wonderful, important and sacred role that I do now. When I first had Joseph I really struggled with being bored and wondering if I was even contributing anything to the world by taking care of him. I missed seeing other adults every day and getting compliments on my work if I did it well. If I changed 10 diapers in one day and managed to do some laundry and cook dinner, I really felt proud, but it felt like "invisible" work because I felt like it only helped me and my small family.

Then when we added Holly to our family I mostly felt completely exhausted and overwhelmed all the time, trying to allow Joseph to expend energy while also letting my newborn sleep as much as she needed to during the day (which was usually 3 naps). It felt like an impossible job compounded by the fact that Allen was working insanely long hours during his last year of medical school. We did have fun, but I felt like my life was a never-ending cycle of playground-hopping/putting-kids-to-bed/collapsing on the couch at the end of the day. There was no such thing as "me" time, something I desperately needed. In fact, right before Joseph was diagnosed I didn't think I could do it for one more day. Ironic, huh?

When Joseph had that first MRI and the doctor said those fateful words, "There is a fairly big mass inside his head, and it's probably cancer," my world came crashing down in so many ways. I felt disbelief that my healthy and rambunctious boy could have something that deadly inside him, guilt that I had been so complaining on the inside over how hard life seemed, and just incredible pain and fear about the future. What about Allen's residency? Could I do this on my own? What do we do from here?

The months that ensued are the months you have read about on this blog--lots of family time, support, help, joy in the little things, and just happiness that we had another day together. So, in some ways, Joseph getting cancer was the best thing that ever happened for our family. We realized how special we all were to each other and got to spend every waking minute all together. Would I have ever have chosen this road for Joseph? Absolutely not. Do I want Joseph back in our family right now? Yes.

But one of the things I am more certain of now is that every child, every person is of grave importance to God. Those diapers you change, the meals you make, the hugs you give, even the bathrooms you scrub are all seen and recorded and valued by God. Jesus says, " 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.' There are no "invisible" jobs. Everything you do matters, whether anyone sees it or not. Being a mother is a worthy job, not because it's "rewarding" or "fun," but because you are molding little hearts and minds and teaching them about God and the world he has made. And, it is not a job for the weak. If you are a mother, you are a strong, brave, hard-working, and inspiring person. You have to be to endure the terrible twos, tantrums, attitudes, spills, falls, messes, and many failures as a parent. So, if you know a mommy, give her a hug, buy her a cup of coffee, send her an encouraging note to tell her how amazing and wonderful she is.

Hero

2008-09-02T05:39:00.001-05:00

"When beauty breaks the spell of pain
The bludgeoned heart shall burst in vain
But not when love be pointed king
And truth shall Thee forever reign.

Sweet Jesus, carry me away
From cold of night, and dust of day
In ragged hour or salt-worn eye,
Be my desire, my well sprung lye "

(-Hymn, by Jars of Clay)

The stars have always held me in complete awe and fascination. Allen will tell you that every time I am faced with a clear, starry night you would honestly think I had never seen stars before. And really, that is how I feel. Every time, I wonder how they could be and how could so many people see them and not believe in God. They are probably my favorite part of nature. Last night I went on a "walk," but had to keep stopping to just stand in the middle of our road in wonder. Finally, I gave up and came home, pulled our little trampoline into the middle of our backyard so I could just lie down and stare for a while. I have to tell you, of all the advice we have received on how to deal with the death of a child, this has not been one of them. But, it should. Find a small trampoline, try to lie down on it comfortably, and stare up at the stars for about an hour.

My sadness was still with me. I find that it is like an invisible blanket that is always with me. But beauty truly does "break the spell of pain" and for that small window of time, I was focused on incredible beauty and it made me realize my pain isn't the only thing I will ever feel. And, I imagined Joseph dancing from star to star, fully whole and complete and radiantly happy, and I thought how he would have no patience for me moping and being sad. (He used to get irked if I was still in my pajamas at 8:30.)

Joseph was always a presence to be reckoned with. If he was awake in the morning, one of us was awake. He would insist on it. I miss waking up and seeing his little face inches from my bed, just staring sheepily at me until I woke up. That always made me laugh first thing in the morning. I miss how he always had a plan for the day and definite ideas of what he did or did not want to do.

Our hospice nurse, Amy, called yesterday and we were talking through those last minutes with Joseph. She said that she has noticed that children, in their final hours, have this incredible strength and heroicism, and she believes it may be for their parents. They can hold on to life much longer than any adult until they feel a peace with leaving their parents. Oh, sweet Joseph, I hate to think you held on any longer just for me or Daddy. She did encourage me that Joseph let go sooner than many children she has seen, and she noted that medically he was in no pain or discomfort or distress, and that the words we spoke to him were beautiful. That has been my prayer from the beginning; that if God were going to take Joseph, that he wouldn't feel any pain at all. That, I could not have handled.

But, I started thinking about Joseph being heroic and now that I look back, he was incredibly heroic in those last few weeks. Probably two weeks before he died, he and I went to the museum and he climbed up a long slide, numerous steps and other climbing things until we were at the highest point in the museum (which is above the 3rd floor, I think). He just kept going, so determinedly and joyfully. I think he remembered being able to do it before and so he just did it. But by the time we got to the top, he was ready to go home. So we went and sat and had a snack and he was delighted to get to pick one out of the snack machine. But, I keep thinking, at that point his tumor must have been fairly big, causing some pretty intense pressure, and his limbs were not working as well as they used to, yet he just wanted to accomplish this feat.

We had been asking him for days if he wanted to go to the museum. He loved the museum in Memphis and it was always a fun outing for him. We just wanted him to enjoy himself and be able to have fun like any other kid, but looking back I wonder if he wanted to make us proud and show us how big and strong he was. He did have a lot of fun, and I was so proud, but it did completely wear him out; I would have been just as proud of him if we had sat at home and watched TV or played with play-doh.

Our sweet little boy. I miss him so much. Before he was born I never knew my heart could hold so much love. Now I can't believe it can hold so much pain. The only thing that is enabling me to wake up in the morning and live life at all is the fact that I knew Jesus before I knew Joseph. I trust Him even as I'm mad at Him. I look at it like marriage. There are times I don't like Allen very much and am so mad at him, but we are still married. My feelings don't make us un-married. And I'm grateful that God can take all my feelings and as Allen has said, He doesn't let us go. I'm still His child, no matter how much I rage against Him. I can be honest with Him and he still holds me tight.

As a side note, we have been receiving the sweetest notes, cards and letters in the mail from old friends and even "strangers," letting us know how much Joseph has impacted them. That is just amazing to us, but it really does encourage us to know that God has used his life and struggle to encourage many people. Thank you for letting us know. I have also thought about putting together a little storybook for Holly of funny "Joseph" stories so she will always remember him. If you can remember a story and would write it to me in an email or a letter, I would be so grateful (even if it's a story where he is being more naughty than nice). Thank you for continuing to pray for us....

A Promise to Joseph

2008-08-29T22:34:00.006-05:00

Here is a video of Allen and his friend John Moessner singing the song Allen wrote for Joseph. They are both wonderfully talented musicians, and I am not at all biased in saying it is the most beautiful song ever. I almost had to threaten Allen to get him to sing it at the Memorial/Funeral...so you can all thank me for persuading him (with a little help from Sarah-Jane). And thank you, John, for joining Allen in making it even more beautiful. Al wrote it several weeks ago, and the first time I heard it I knew he had to sing it at Joseph's funeral, whenever that would be. It turns out it was much sooner than I expected. Here are the words:

A Promise to Joseph

I can't stop the rain from falling
It's been raining for so long
I can't take your pain away
Or find what's right inside the wrong

But take my hand, we'll go through this together
And I can help you to stand
I don't know what tomorrow will bring us
But you'll know where I am

I can't stop the night from coming
Or turn the darkness into light
There's so much I cannot do for you
But I can give you the strength to fight

But take my hand, we'll go through this together
And I can help you to stand
I don't know what tomorrow will bring us
But you'll know where I am

There is one who can do all things
Can stop the rain and end the night
He'll bring you peace and restoration
And turn this wrong into a beautiful right

So take His hand, you'll walk with Him together
Before His throne you will stand
We'll be fine with the peace He will bring us
And I'll know where you are

Joseph's Memorial

2008-08-27T02:27:00.005-05:00

Picture on Program drawn by Aunt Jennifer

Joseph's visitation lasted every bit of four hours. We saw so many old and new friends and people who only knew him from the blog. Many from Atlanta made the trip as well as friends from across the country and lots of family from overseas. It was overwhelming. While it was draining, it was also greatly encouraging to see how Joseph's short life had touched so many people.

The funeral was such a beautiful service. At the beginning of the service we were treated to some video of Joseph being his wild, funny, sweet self. We sang a few hymns and heard some great music. One of Gillian's sister's friend knows Natalie Grant who wrote the song Held that has meant so much to Gill; and she was able to be here and sang it for us. It was an amazing moment. We heard from Aunt Jennifer, Uncle Matt B., and Uncle Sam as they told stories about Joseph and shared their thoughts and their pain. Then I shared a few thoughts and played a song that I wrote for Joseph over the past few weeks. Since Gill usually shares her thoughts, I'm going to just post what I said for those who couldn't be there:

Thank you all so much for coming. Joseph would have loved seeing all of these people together at one time. He was definitely a people person. He always had to be with one of us all the time, until we started making him have “room time” a few months ago so that he would learn to entertain himself at least a little. But there is no doubt that he was happiest when he was around people that he loved and I can only imagine his face to see all of his friends and relatives together in one building.

Way back last year a few weeks before Joseph’s original diagnosis, our good friends the Slotkins had to watch their son Luke die in their arms. I was talking with BJ sometime after and trying to put myself in his shoes and all I could say was that he was handling it unbelievably well and that God would never let that happen to me because I couldn’t handle it half as well as he did. I said that I would probably in anger chuck all of my beliefs in the goodness of God and would turn away from Him. Now that we’ve gone through so much with Joseph, I tell people that it’s not that I haven’t given up on God, but that He hasn’t given up on me. He won’t let me go. Every time I am angry beyond control at Him, He refuses to leave me alone. We definitely struggle with believing in God’s goodness. I now feel that the phrase God is good all the time, and all the time God is good has to be chanted over and over and over again until it’s driven in your head. God is good, it’s just that our understanding of what is good is so limited. Another phrase that I have repeatedly repeated is that He is God and I am not. He is God and I am not.

Throughout all of this past year Gillian and I have seen and felt the body of Christ supporting us through physical needs like meals and presents and cards, but especially through prayer. There is no way that we could express adequate thanks for everything that everyone has done. Gillian and I also want to thank our families who have helped us in so many countless ways. From free babysitting from all four grandparents, to housing from Jennifer and Matt and the Taaffes, but mainly for just being around for Joseph and helping his time here on earth even that much sweeter.

Now about the boy, cause that’s why we’re here. I want to tell just a few of our favorite stories about him. My new favorite story of all time actually happened last week. Our friends from Atlanta the Slotkins came up with Joe’s best buddy Logan for a weekend visit. Joseph was so excited to see him. Anyways, on Sunday before they left all three of the kids were playing in the play room. Holly snatched a toy away from Logan and he retaliated by pushing her while trying to get it back. Joseph didn’t see that Holly started it and even though he could barely walk, he marched over to him and just let him have one. Of course we don’t teach out children to hit, but seeing him want to defend his sister was so sweet and shows so much about him. He was passionate and fiercely loyal. He loved his sister so much even though they didn’t get along all of the time.

Joseph had so many trips and adventures during his last few months. We went to Disney world, Florida a couple of times, and we tried to do just about everything that we thought would be fun for him. But I noticed on all these trips that he was actually more excited to go home than he was during the trip. He loved being at home and he loved the normal day to day life. All he wanted was Mommy, Daddy, and Holly. There’s a lot that I have learned from him and his life, but I keep coming back to this lesson. We should all take the greatest joy in our day to day living and just being surrounded by the people we love.

Gillian and Holly and I and the rest of our families are hurting and missing him so much. I will continue to miss him until I see him again in heaven. But although our pain is real and seems unbearable, we have tremendous peace knowing that he is no longer suffering, that he has a new body that is tumor free, that he is at this moment in heaven being held by his eternal Father. And though we don’t have answers for the questions of why this happened, we know that God is God and we are not and that he is good all the time.

Anyways, thanks to all those who made such an effort to be there for us this weekend. We are truly grateful to have such a strong group of friends and family that are supporting us. We are indeed hurting and strugling to make sense of life now. Please continue to pray for us and for Holly.

Funeral Plans

2008-08-22T17:13:00.003-05:00

Just a quick note to tell you about Joseph's memorial and visitation. The visitation will be on Sunday from 4-8 at Christ Community Church in Franklin. The Funeral will be at the same church on Monday at 10 am. If you need directions click here.

We appreciate and are overwhelmed by all the support we are receiving. Thanks for your continued prayers for us and for Holly and the extended family.

Held

2008-08-21T20:14:00.004-05:00

4 years was too little. We let him go. We had no sudden healing. To think that providence would take a child from his mother while she prays is appalling. You know the rest of the words. They have been resounding in my head for the past few weeks. I feel the Lord gave me that song as a comfort but also a gentle preparation for the future. Sometimes as I listened I would just weep, other times feel immense joy and peace. Now I just feel sadness. Sadness at death and loss and that we will miss him so much it hurts. I already do miss him...his sweet personality, his great love, energy, radiance. I truly do feel special that God chose me to be his mommy.

I have always felt an impulse to tell Joseph how proud I am of him. When he was born and I got to hold him for the first time, those were the words that kept rolling off my lips. "I'm so proud of you, Joseph. You did such a good job." It felt a little strange to me, but I felt like the words were not really coming from me...that God wanted me to say this to Joseph. Even as he grew up, I always sensed that he loved encouragement and it spoke volumes of love to him, more than a hug or a kiss. He longed to please, to do the right thing, to make mommy and daddy happy. Today as he was holding on to life with a thread, I sensed I needed to tell him what a good job he was doing. "I love you, Joseph. You are doing so great. I am so proud of you. Just relax and go to Jesus. Mommy is here with you." I think he was holding on, maybe not sure if he was failing us somehow by letting go. But the hospice nurse said they can hear everything, so I was more sure I wanted to tell him how great he was doing. Allen sang him his favorite song, "The fox song," (by Nickel Creek) then I told him his final "Target story" and he went to his final rest as I was telling him that story. As gruelling and heartbreaking as his last few hours were, those final moments were nice and I did feel he was at peace and went very peacefully.

Now we are left with the pain, the memories, the knowledge that there will be no soccer games, no first day of school, no more cars and trains strewn all over the house. Oh, how I will miss that. How I will miss being needed. He has been my job, my responsibility for the last four years. My life has been devoted to raising him, loving him, teaching him, being there for him, protecting him. Even after he died and he was lying back there on our bed, I felt the need to be with him as others said goodbyes. He always wanted me with him and I felt I needed to protect him and make sure he was all right with people coming in. I feel like my other half is gone. He has been my constant companion. I always felt like he needed me so much, and sometimes I wished he didn't. Now I realize I need him too.

I am very thankful for Holly. She is a bundle of joy and delight, and has kept me laughing and dancing in the midst of this intense pain. God in His wisdom gave us Holly at just the right time, and she is His gift to us that I know will keep us from falling into despair. These verses have been on my heart last night and today: "Behold I am with you always, even unto the end of the age," and John 10:27-29: "My sheep listen to my voice; I know them, and they follow me. I give them eternal life, and they shall never perish; no one can snatch them out of my hand. My Father, who has given them to me, is greater than all; no one can snatch them out of my Father's hand." This last verse, all I could remember was that "no one can snatch them out of my hand," so I looked it up and found the whole passage so comforting. At a time where my feelings betray me, God's Word is giving us great hope.

We are still working on the details of Joseph's memorial and funeral, but we are hoping it will work out to do a memorial on Sunday afternoon/evening and have the funeral on Monday. We will definitely post when we know for sure. Thank you all for your kind comments...they truly have been a great comfort and encouragement.

The End

2008-08-21T15:16:00.002-05:00

Joseph died today at around 2:00 in our house. We rushed home this morning not knowing if we were going to make it home before it happened, but we made it in time for most of the family to see him one last time. He passed in our bed and was not in any pain at all.

We don't have any plans yet for the funeral, but will let you know later. Thanks to all for your many prayers. Sweet Joseph is now at peace.

More Sad News

2008-08-20T20:02:00.007-05:00

Joseph continued to decline today. His MRI today showed that not only was the tumor back, but it was four times as large as it was after the surgery last month. He also had significant hydrocephalus (swelling) from the tumor blocking the drainage of the spinal fluid from his brain; but the MRI also showed evidence of some herniation (which basically means that the pressure was so high, it forced the brain into areas where it shouldn't be). With all of this going on, they said that they do not expect him to live more than a few days. We figured that he was having some tumor regrowth and knew that these new symptoms were alarming, but we were not prepared to hear this news.

So, after talking with a quality of life doctor, we all decided that the best course of action for Joseph is to take him home, make him as comfortable as possible, and keep him pain free. There are some things that they could do to relieve the pressure, and we could start the new chemo, but they used the term "days" to describe how much time those measures would buy us. We definitely feel that he has suffered enough and to put him through more surgeries or even another IV stick would be cruel.

We are really grateful we got to meet with this new "quality of life" doctor. He is a neuro-oncologist who is starting up programs in hospitals to help families adjust to life with a very sick child. Speaking with him today was very informative and helpful and gave us a lot of peace about the immediate future. He was able to read his MRI scan and tell us exactly what was going on, but he was also very emotionally supportive and encouraging to us as parents. I had prayed this morning that God would send us someone to help us know how to help Joseph in these last days, and this man was a definite answer to that prayer.

We are spending the night here in Memphis with Jennifer and Matt and then we'll be leaving in the morning for Nashville where Joseph will get Hospice care at our house. He isn't in constant pain, but he can get pretty severe headaches, so we'll be giving him medicine whenever he needs it. He is very lethargic and has been sleeping most of the past two days.

Thank you everyone for the birthday wishes-- the only times that he was happy and smiling today was when he was opening presents and talking about opening presents. Please keep praying for us: that Joseph would be pain free, that we would have strength to get through this, that we would feel peace about everything, and that our final days together would be special.

Not doing too well

2008-08-20T01:23:00.003-05:00

Okay, so I lied in the last post. Here's a quick update. Yesterday joseph continued to grow weaker and since we were in the car most of the time we didn't really notice it that much. Early in the morning he woke up with a severe headache and vomited. Then all day today he was unable to stand or even sit up. He seems to not be able to move his right side of his body. He did great at St. Jude but that's probably due to just being weak; he wasn't able to give his usual effort in fighting the needle. He only had a PET scan today and they couldn't really tell us anything about what's going on. The MRI tomorrow will tell more, but we kind of know what's going on based on his symptoms. Hopefully after the MRI, we'll be able to start Avastin on Thursday and Friday and then come home.

He is very frustrated and down about not being able to move. Pretty much the only thing that is keeping him somewhat happy is that tomorrow is his birthday and we have told him about the many presents waiting for him. Other than the headaches, he isn't in any pain; but we can't give him any medicine to help him understand what's happening or make it easier. Obviously, we are also pretty depressed about his quick deterioration as well.

We'll try to update again tomorrow after the MRI. Please keep praying for him.

Veggies Videos

2008-08-17T02:47:00.004-05:00

Blogger wasn't loading the videos on the last post, but it's working now. Here is Joseph meeting the real Larry. His paralyzed side is facing the camera, but you can still see a huge smile on the other side. The second one is the kids playing various whistles and instruments in the music room.

Also, we probably won't post until we get back from Memphis on Thursday, so be praying for our visit. We're going to try and take Holly because both she and joseph want her to go. He has a bunch of scans and tests and then hopefully he'll get his first avastin treatment IV. Honestly it didn't feel like we were going to make it to this point and getting here seems like a mini-goal accomplished. I think what we are mostly hoping for is that the avastin/cpt-11 shrinks whatever is there that is causing the symptoms. He now has to be holding hands with someone to walk without falling and he has started having some shaking in his arms when he uses them. It would be great to have some improvements for a change instead of steady worsenings. Above all the hope is that avastin will kill the tumor, but like Gillian said a few posts ago, we are being realistic and know that this is not the expected outcome.

We really do appreciate and depend on all your support. Thanks for keeping us in your prayers.

Veggie Tales

2008-08-15T17:19:00.004-05:00

We love Bob the Tomato!

Joseph practicing his art
The "real" Larry the Cucumber!
Joseph painting Joseph
Joseph riding his Lightning
Making music

Yesterday we got to go on a tour of the Big Idea studios where they make all the Veggie Tales videos and movies. We got to meet the the man behind the voice of Larry the Cucumber which startled and confused the kids (but once he held up a toy Larry they all got it and thought it was amazing). Our friends from Atlanta the Slotkins are here for the weekend, so Joe's best friend Yogi got to come too. They did some painting on the computer, played with some of the instruments in the music room, and Joseph had his picture drawn by one of the artists (It was such a cool office, by the way...musical instruments, art, big fluffy Bob the Tomatoes to sit on, computers you can paint on. Come on, can this really be called work?) They had a great time and we are very thankful to Melissa and everyone at Big Idea for letting us come and interrupt the day. Everyone there knew about Joe and his story and were very gracious and sweet to him. He was treated like a little king.

At the end of the tour, Joseph started crying because he thought he was going to a Veggie Tales store where he could pick out a toy (I don't think he quite fully grasped the idea of a studio and that Larry and Bob aren't real talking Veggies). He was almost at tantrum level when I told him we could go to a store and buy something afterwards. Then as we were about to leave, they took us back to the lobby where there were three baskets filled with toys and books and movies for each of the kids. They were all so excited and happy. Thank you, Big Idea, for a wonderful morning!!

Disappointment with God

2008-08-13T10:42:00.010-05:00

Holly is Daddy's girl.

Holly and Bella enjoying the great outdoors
Joseph has discovered online shopping!

Bella and Joseph, overjoyed to see each other
Aunt Sarah-Jane and Nana playing beauty shop with Holly

These are some picture from our weekend with Bella and my very dear and sweet sis, Sarah-Jane. As you can see, Holly loved having a girl to play with and I think it was a good distraction from all that is going on with Joseph (and I loved having my sister there with me). Allen had a night away with his Dad and brothers to a lakehouse, where they enjoyed boating and fishing. We were all very glad to have him home since Joseph had a rough weekend.

Right now Joseph is in much better spirits and his usual smile is back on his face much more often. I don't know if it was tiredness or just not feeling good, but this weekend he was very grumpy and clingy and just physically not doing well. He didn't leave my side for more than a few seconds at a time, until Daddy came home. Then he was happy again and left for Target with him with no problems leaving me. Go figure! I think his turn in mood resulted from a very good nap on Sunday, just starting to feel better overall, and excitement at Daddy being home.

He is still taking steroids, although we are trying for a third time to wean him off....very slowly.

Joseph is continuing to press on, trying to run and play, but then getting discouraged when he realizes he is way off balance and really needs a hand to hold in order to stay up. While it is encouraging to see he desires to play, it is very painful to not be able to make it all better for him. To watch him watch others play and do the things he used to be able to do with ease is torture.

Someone recently asked me, "Do you feel like you are sitting on a ticking time bomb?" My thought was, "No, it feels like someone is slowly ripping me apart." I hope that isn't too graphic, but I can think of no other way to adequately describe it.

We waffle between hope and despair almost hourly, depending on Joseph's symptoms and mood. I want to hope, hope, hope that Avastin works or that God steps in to save the day miraculously, but then sometimes it just seems impossible.

Aunt Sarah-Jane read to us from our "Read Aloud Bible Stories" book at dinner the other night. The story was about Jesus healing the blind and making lame people walk. Joseph was listening so intently and soaking up the hope that was in those stories. I thought to myself that I often put so much hope in a new drug or the right treatment, when for God it would be so easy to say, "Be healed." Why he does for some people and doesn't for others is a painful mystery.

I admit as I've gotten older I have become more cynical and skeptical than I'd like to admit. It is so hard to see such pain, evil, and disappointment and believe in a good God. A friend of mine gave me the book "Disappointment with God" (by Philip Yancey) about a year before we found out about Joseph's tumor. I found the book so respectful and sensitive to questioning people, and the best part was that he didn't have all the answers. But I loved the way he searched the scriptures and the heart of God to try to make sense of the evil and suffering we experience.

One of the questions in the book was "Why didn't Jesus heal ALL the people he encountered?" I believe he referenced a story where Jesus healed a man at a pool, but didn't heal all the rest. How could he single out that one man and not have compassion on all the men/women? Well, that got me thinking, "Yeah, why not?" Yancey notes that God is always more concerned with our spiritual healing than our physical healing. In the Old Testament he gave many signs and wonders and miracles and it still didn't produce the faith and belief he desired. In the end we will all die, and at that point it won't matter how healthy our bodies are but whether we have responded in faith to the love of Jesus.

I am definitely not doing justice to this wonderful book, and am probably butchering the examples, so I would recommend just reading it.

I am sorry this entry is so "all over the place" but I have to write everything in the small time slots I have where I am not needed....so there you have it. Thanks for listening. Thanks for praying and walking this journey with us.

A little better

2008-08-08T22:02:00.002-05:00

Today was a better day for Joseph. No vomiting but otherwise the same as before. We had a good outing to Target (or Tarbucks as I now call it, b/c most of the Targets around here also have a Starbucks--heaven!!), where he actually found a car he didn't have. What joy was his! He held that car all day and took it with him to bed. But tomorrow will be another day and another quest for a new train or car. We fear we are creating quite a consumer, but truly these trips to Target are the only things that get him excited and smiling and laughing. He really doesn't feel well enough to run around and play a lot, so we give him all the Target and Moe's his heart desires.
Tomorrow we are expecting a visit from cousin Bella and that has gotten him very excited. He could barely go to sleep tonight. It was like Christmas for him! They play so well together and she likes to do stationary play like coloring and play-doh, which I think he finds comforting. He can't wait to do some painting tomorrow morning. I'll post the pictures if they turn out to be the Eiffel Tower or something this time.
Holly is doing well and is being very nurturing and kind to Joseph. She has a sixth sense with him and seems to know when he isn't feeling well before we even tell her. She got to spend the night with Nana and Grandad last night, which I think was a nice break for her. She loves to swim over there and play dolls and have tea parties with Nana. And of course she doesn't mind being the center of attention. We hate that she is having to go through all this as well, but we are blessed with wonderful family who lavish her with love and attention.
Thank you, all you prayer warriors, for lifting us up in prayer.

Please Pray

2008-08-07T23:48:00.002-05:00

Joseph was not feeling well this morning and vomited about 5 times. We started giving him Zofran (an anti-nausea medicine) which kept him feeling good the rest of the day. Yesterday was also the last day of steroids and tonight he started acting weird again--really wobbly and uncoordinated and complaining more of headaches, so we put him back on steroids to help him walk better and function by himself.
We asked our doctor if we could move up the beginning date for Avastin, but the doctors at St. Jude feel strongly that it is not safe to do it until 6 wks post-operation (because Avastin can interfere with wound healing).
So, we are left with him basically falling apart before our eyes and there is nothing we can do. We thought about taking him for a CT scan, but even if they found something different they couldn't treat him until August 19. We will keep him home and hope that steroids help his symptoms. We don't know if the vomiting was a bug or if it is from the tumor, but we will keep giving him Zofran if he continues feeling sick.
We are frustrated that we can't do anything, but this is where the reality of this tumor hits home--it is not humanly curable and even doing Avastin is not a guaranteed "cure," as much as we hope it will be (and of course we still hope and pray for complete healing). So, please just pray Joseph will keep being in good spirits and that all of us will have patience and wisdom in taking care of him. I feel like we are definitely back in survival mode, just trying to brace ourselves for the next hurdle, hoping things don't get worse. We feel so helpless in this situation but we know we serve a God who is able to meet all our needs. He always has for our family and we know He always will. Thank you all for praying for us, calling and emailing, and serving us in so many ways.
Love, Allen and Gillian

Picture Update

2008-08-06T08:15:00.010-05:00

The last few weeks have had some fun memories, despite the worries we are having with his physical symptoms. Here are a few photos with friends and family.

Painting, an ice cream party with Mimi, figuring out the skateboarder track with Grandad, and Joe and Holly with their friend Grey, taking refuge on the couch from the monster.

Joseph has really started to enjoy painting. I really think he was just swirling the paint brush around, but don't you think these pictures look like a dinosaur and a car? (his two favorite things!) Of course I'm not at all biased, but he must have a gift.

Etoposide Finished

2008-08-04T13:57:00.003-05:00

Joseph finished his two weeks of Etoposide without any side effects other than fatigue. We're glad to be done with it. Now we're waiting two more weeks before we go back to Memphis for a bunch of scans and begin the Avastin/CPT-11 treatment. Again, the new treatment will be given IV every two weeks in Memphis, so we'll be taking lots of trips to St. Jude in the future.

Joseph's facial symptoms have gotten quite worse over the past week and now the left side of his face is totally paralyzed. He always had some mild loss of function on that side since the surgery in December, and he lost all sensation on that side; but now nothing is moving and it distorts his speech, interferes with simple tasks like drinking water, and wipes half of his beautiful smile away. It probably is harder for us to watch than it is for him, but today he was frustrated and sad about not being able to move his mouth to drink a juice box. He is amazing though, how accepting he is of his limitations and how quickly he adjusts to each new challenge. He has started coughing slightly after drinking which is probably due to loss of sensation in his mouth and uncoordinated swallowing. We found that if he tilts his head down he can swallow without coughing and now he does it everytime he drinks without thinking about it. All of this is probably due to the residual tumor around his brainstem that must be growing or infiltrating further. The worst part is that there isn't really anything we can do except to hope that the new treatment will kill and shrink the tumor and restore function.

We're still weaning him off steroids, and he should be completely done in three days. So far he has done great with the wean and only has occasional headaches. He has had more energy and desires to play and run (with assistance) which is good to see.

It has been unbelievably hard to watch him lose function. Our focus is on making him as comfortable as possible with the changes and trying to explain to him what's happening as best as we can. He understands more than we give him credit for. We have had to start giving Holly "medicine" when Joseph gets his; she gets a syringe full of water. The other day Joseph was getting medicine and Holly asked for her medicine. Joseph said, "No Holly, I have to take medicine because I have a boo-boo in my head. Right Daddy?" It was so sad to hear that, but at the same time it was encouraging to realize that he knows what's going on. He knows that all of his symptoms are because of the tumor.

Please continue to pray that the steroid wean would be successful, that the new treatment would be effective and have few side-effects, that Joseph would continue to be strong and accepting of his circumstances, that we would have the strength to endure through this, and for a miracle.

** I added a link to a daily online devotional by Charles Spurgeon on the right of the screen. Today's reading is amazing and so fitting.

Playing Again

2008-07-30T00:02:00.006-05:00

I awoke this morning to the pitter patter of running feet (okay, more like thunder) and Joseph screaming and laughing from a game with Allen. After many days of him mostly wanting to sit on the couch, not wanting to play or laugh or even smile much, this was truly a wonderful way to wake up. He had a very good day yesterday, too, and played a lot with Uncle Sam and David at Nana's house. We put him back on steroids and are now starting to wean him off a second time in the hopes that a slower wean will yield better results. We would love for him to be off steroids because as you know they interfere with his sleeping and eating habits and his overall mood. So, we would ask you to pray that this wean is successful and that he has no scary side effects from stopping them.
I think Holly is happy to see Joseph improve. Today I had to pull a tick off of him (which I am terrified of doing, but it was successful) and he was pretty upset about it. Holly went over to him and just held his head for a long time and kissed it, then she kissed him right on his scar and said "It's okay, Jusha, I kiss your boo-boo, too." They have started up their hilarious conversations, too. My favorite thing is that Joseph asks Holly permission to do things. He will say something and then ask, "Is that okay for you, Holly?" I keep telling him that Holly is not in charge (at least we try to pretend we are in charge), but it doesn't stop him...
I also am glad to see him happy again. When he is happy, I am happy. When he is miserable, I am pretty miserable as well. I keep wanting to hope that he will be fine and back to his normal self soon, knowing full well that he may possibly never be back to his normal self. It is a trying roller coaster to be on.
No matter what happens, I still come back to the hope that God will just touch Joseph and completely heal him and we will all give glory to God for a miracle. However, I am comforted to know that if the Lord does take Joseph home, it will be the most beautiful and glorious home he has ever known, with no sickness or pain or sorrow.
So, we are taking things each day at a time. We only have this day--everyone does. With Joseph, we are faced with his mortality more severely, but none of us is promised a tomorrow. So we are just trying to soak up every minute and find joy in the fact that we can be together and have moments of normalcy and fun.

Good news, we think

2008-07-24T15:23:00.002-05:00

Well, Allen and Joe and Mimi have left St. Jude and are on their way to Target and Moe's. They did a CAT scan, which Joseph was able to sit still for, and our surgeon and neuro-oncologist both saw no tumor growth or anything different from the last scans. They believe all these new issues are due to steroid withdrawal, so we will keep giving him the steroid and hope to see him improve. Both Allen and I are a little skeptical because we have never seen him act this way and it is hard to believe that simply coming off a steroid could do this. But, we are choosing to believe the doctors, trusting they know a lot more than us, and be glad that there is no growth or infection or anything that requires surgery. So, thank you for praying. God did give them a very short trip and Holly and I are looking forward to having them home tonight.

New Issues

2008-07-23T23:12:00.002-05:00

Today Joseph has been very off-balance and uncoordinated. He has been complaining of headaches for the past few days too. He also seems not himself--unusually goofy and confused. We initially thought that this could be due to coming off of his steroids and so we gave him two doses today, but it doesn't appear to be having any effect. So, unless he dramatically improves overnight, we're going to head back to Memphis in the morning to get some scans and see what's going on. It is not very likely that this is tumor regrowth so soon after surgery, but I don't know what it is. It could be infection/inflammation from the surgery or something like that.

We're very concerned and sad that we have to go back. Hopefully there will not be a major issue and we can come right back. We are very tired and were hoping the end of steroids would be a positive thing...so please pray for our endurance and for Joseph's as well.

Held

2008-07-22T14:05:00.002-05:00

I am more of a do-er than a feeler. If something goes wrong, I want to do something about it. I don't feel it is right to just wallow and be sad and self-pitying. I am not saying this is right, but this is how I've been in my life until this point. And life has a way of kicking you off your rear most days and requiring you to keep going, which I am grateful for. The fact that my kids still need to get dressed, brush their teeth, have breakfast, go potty, etc. reminds me that life still needs to be LIVED, despite the death we fear is at our door. And, thankfully neither one of them fully comprehends the implications of Joseph's sickness, so they don't have the fear and dread that we experience and they cause us to laugh and play and have unspeakable joy due to their innocence and love.
However, this experience has taught me that feelings and sadness are such a vital part of life, and letting myself feel them does not mean weakness and wimpiness. It just means I am human. As a Christian, I do believe in God's goodness, faithfulness, tenderness and love towards me, but I can still be appalled at this tragedy in my life. As a mother, I can still care for my kids, discipline them, take them to playgrounds, yet all the while marveling that I have another day to celebrate their lives. As a wife, I still quarrel with Allen over trivial things, but I am getting to know my husband in a much deeper way, seeing his compassion, wisdom and deep deep love for his family that brings me to tears.
My tendency is to push away the tears and the feelings and get on with business as usual, but I am learning that if I will let them, these feelings bring about a deeper me, one who is more fully human.
All this to say that yes, my life would be a lot easier if Joseph were perfectly healthy and continuing his life the way he would have before cancer. But I know that God doesn't give us lives of ease; his main purpose is to make us more like Him, and if that means suffering then it is worth it. And I believe with all my heart that Joseph feels more secure and loved by us and by God because of this experience. The empathy and love I see in him are truly amazing.
I turned on the radio a few days ago and this beautiful song (Held, by Natalie Grant) came on that I feel like could have been written for me. It brought to the surface so many feelings that I had to wrestle with, and I could not get the words out of my head. These are some of them:

"This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held
This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow"

If you can somehow listen to it, I would recommend it. Not only are the words beautiful, but the music is too.
Thanks for listening to my ponderings. I'm sure you are wondering how Joe P. is doing. He is well and has started taking his interim chemo. So far, we have not seen any side effects, although he is taking anti-nausea meds 3x a day. He is playing a little but is not back to full speed yet. We have been going to Moe's a LOT (where he and Holly enjoy sitting by the door and yelling "Welcome to MOE's!!! at everyone who walks in). Target has become a daily activity and Joe's biggest complaint is that we already have all the cars and trains already! He still has some pain so he is taking ibuprofen to help with that. Please continue to pray for Joseph's healing and for God to sustain all of us and give us wisdom in decision-making and parenting. We return to St. Jude Aug 19-20 (Joseph's birthday!) for some more scans before we begin Avastin. Thank you, thank you for continuing to pray for our family!!

Progression

2008-07-17T16:41:00.003-05:00

We heard back from the final pathology today and talked with our doctor at St. Jude. They discussed Joe yesterday at the tumor board and they all confirmed what the surgeon suspected, that the tumor was back.

We are planning on starting joseph on Avastin/CPT-11 which is another trial drug combination. He won't be in the trial version which will allow us the same medicine and treatment and also the freedom to give him any other supplements we want. However, we can't start that treatment for five more weeks since it causes poor wound healing and Joseph just had surgery. While we wait, he will take one cycle of etoposide by mouth for two weeks to try to stop or hold the growth of the tumor cells. Then we'll start Avastin/CPT-11 which is given IV every two weeks at St. Jude.

We are obviously very down about the news, but as Gillian said in an earlier post, we are not ready to give up yet. Joseph is doing great and is starting to play normally again, running and chasing around the house. He gets stronger every day, and as we taper off the steroids, he is sleeping more as well. Please continue to pray for daily improvements and mobility, that we would all get sleep, that this new treatment would work, and that he would not have many side-effects from the etoposide. Thanks for all the support you give us through your words and prayers.

Recovering Well and 4th of July pics

2008-07-12T16:42:00.007-05:00

Joseph is doing great considering all he's been through. He is up walking around and is moving his head a little better. Today he asked to go to the playground and ride his bike, but when we got there he was immediately ready to go home. I think he forgot that he's not up to full speed and full play.

We still have heard nothing about the pathology of the biopsy they sent, and are anxiously waiting so that we can form a plan. I assume we'll hear something next week, but I really have no idea. All of his regular doctors were coincidentally on vacation last week and even the surgeon left town the day after the surgery. So the lesson is to check your doctors' schedule before you get sick.

He has been on steroids for about three weeks now and his little body is starting to show it again. They also make him an extremely light sleeper and he is waking up two or three times a night. The steroids are tapering down and he'll be done in another week or so. We will be extremely happy when they finally stop and everyone gets to sleep again. Thank you all so much for your prayers this past week. Please continue to pray for him.

We never got a chance to post pictures from July 4th, so here are some. Joseph and Holly rode in a neighborhood parade with the largest entourage I've ever seen. We had like twenty people walking around with us including his grandparents, WK, 4 uncles and Jennifer, and gillian's extended family from Ireland and Holland. He and Holly and sometimes WK rode in a power wheels jeep. The theme was I think fantasy or something like that so Joseph was once again Sir White while the girls were princesses. It was a great time and afterwards Joe and Uncle Matt P. lit some fireworks. Holly watched safely from inside the house. All of these pictures and video are obviously from before the surgery.

The entourage: almost everyone you can see was with us

posing with one of the elaborate floats

Holly's safe zone

Joseph being really silly

Coming Home

2008-07-09T19:24:00.002-05:00

Joseph was released today from the hospital barely 48 hours since his brain surgery. Today he was up sitting on the floor playing for an hour and a half and he has started walking too. He isn't moving his head very much, but even that has improved just over today. We're spending the night back in the Grizzlies house and we have an appointment at St. Jude's in the morning. After that, we'll hopefully be back in the car on the way home. We are not sure when we will know the results of the biopsy but will be in conversation with our doctors once that comes back. Our main doctor has been out of town and will return next week. Please continue to pray for Joseph's healing--both from the surgery and from the tumor. His pain has gone down considerably, which is great. He is not needing much pain medicine at all. We are just giving him some every 6-8 hours or so. What a trooper! Thanks to everyone who is praying for Joseph and for us.

Recovering well

2008-07-08T12:05:00.002-05:00

Joseph is again stunning us all with his quick recovery and fighting spirit. Last night I was pretty depressed and was feeling kind of listless and weak. Well, within one minute of Joseph waking up I was crying laughing. This boy cracks me up. First, he wanted HIS underwear back on and wouldn't accept the hospital diaper as an alternative. After asking about 10 times, we finally unplugged all the tubes and got the boy his Bob the Builder undies on. Then, he wanted his blue crocs on, which just got me tickled because he has NO clothes on but he wants his shoes on. And, he drank 3 juice boxes and an entire grilled cheese before I left at 9:30 p.m. Allen, ever the sacrificial Dad and husband, stayed by his side all night in a chair and let me go sleep in a bed. Boy, I'm so lucky.
This morning Joseph had his post-op MRI and he's now back up in his normal room without any IVs hooked up or anything monitoring his heart rate or BP. So, I guess that means he is recovering very well since he doesn't need any of that. He and Daddy are both soundly sleeping and Joe's pain seems to be fairly normal and is being managed well with morphine. He keeps saying he's ready to go to sleep now (meaning to be sedated), so he obviously thinks the surgery hasn't happened and he's ready to go get it done. What a blessing he doesn't understand everything that is happening. He is also very irked that he can't move his head and sit up yet. He was like an irrated executive yesterday, saying, "I can't move my head! I can't do ANYTHING!" He knows there is pain there but has no idea where it came from.
Needless to say, we are still very bummed about the news yesterday. But if Joseph isn't ready to quit fighting, we sure aren't either. We will find out the official results of the biopsy then formulate a plan of attack on this horrible tumor that doesn't belong in my baby's head. Thank you all for your notes and prayers.

Surgery finished

2008-07-07T18:37:00.001-05:00

Joseph has been out of surgery for about 2 hours now and is in the ICU recovering. The surgeon said that they removed as much of the area as possible and that things went fine. He said that what he removed looked like tumor, not radiation necrosis. We have to wait for the pathology to come back for sure and that won't happen for a few more days, but it does not look like the good news we wanted to hear. I have to keep reminding myself that this surgery was mainly to remove the pressure from the growing mass and in that light it was successful. The fact that it looks like tumor is devastating.

Joseph has had a rough day and is very irritable. The ICU is not like the one in Atlanta with nice private rooms and the feeling of security. He has curtains for walls and no TV or anything to distract him. Hopefully he will just spend one night there and then be transferred to the floor. But this night is going to be very hard. Please pray for peace and for strength for everyone to get through it. Thanks.

Prayer Requests & Rally Foundation

2008-07-06T10:46:00.004-05:00

Hi all,
We head back this afternoon to Memphis. His surgery will be tomorrow around lunchtime, although there will be no lunch or breakfast for this little guy. So, that is number 1 on our list of things to pray for. :) Please also pray:
--that Dr. Boop will be able to remove this necrosis/mass/tumor easily and without any damage to nerves, etc.
--that the biopsy would show it is necrosis and NOT progression
--that we would have wisdom as to what treatment to pursue if there is tumor growth
--that God would give us safety and peace throughout the surgery and recovery
--that Joseph's recovery would again be swift and free of infection or complications
I could list a hundred things, but I think these are the main things. We cherish your prayers and truly feel them.
A dear friend of mine sent me this verse from 2 Corinthians 1:8-11:

For we do not want you to be ignorant, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.

It just completely describes our feelings...how again and again we have felt the sentence of death in our hearts, but how we have been so upheld through the prayers and kindness of friends. You all have been the hands and feet of Christ for us and we are so grateful.

Another thing I wanted to write about was this wonderful foundation called the Rally Foundation. Every year they do a cross-country bike ride to raise money especially for childhood cancer research. They ended in Nashville and rode through Nashville in Joe's honor. The above pictures are from the lunch they invited us to. If you would like to check out their site it is:
rallyfoundation.org and rallyacrossamerica.org
Joseph is listed under "kids" on the rallyacrossamerica site.

Surgery Monday

2008-07-03T18:28:00.002-05:00

After meeting with Joe's surgeon we decided that surgery would be the best course of action. He is very confident that he will be able to remove a significant portion of this area with minimal risks. They again stressed the importance of operating now instead of waiting until the problem was worsening and it had to be done emergently.

We'll be home for the weekend and then head back to Memphis on Sunday. The surgery will be Monday around noon and should last about 2-3 hours. The surgeon expects him to have a quick recovery and a short stay in the hospital afterwards.

So it's another surgery. We feel pretty good about the plan; obviously we're anxious about the surgery, but we feel like it will help his symptoms, get him off steroids, and hopefully give us some definite answers about the nature of the spot.

Please be praying for him and for the surgery throughout the weekend. Thanks.

Still no answers

2008-07-02T15:50:00.003-05:00

We didn't get the definitive results we were hoping for today. His MRI showed a larger area of abnormality and the PET scan showed some minor changes from the last one. The PET showed a slightly increased metabolic activity that could be interpreted as normal tissue or the beginning of tumor activity. The conclusion was that they still could not say whether this was tumor progression or necrosis and edema from radiation.

Because it is putting pressure on his brain stem and causing issues for Joseph he has been on steroids, which have helped to reduce the pressure. Over the past week, his head tilting has basically gone away and his balance improves daily. He's not quite back to being as fast and steady as he was, but he's not falling over much anymore. So the short term plan is to continue his low dose steroids.

The long term plan is still up in the air. The only way to be sure whether it is progression or pseudo is either to show a decrease in the size of the area with repeated scans over time or to surgically biopsy the area. Because of the location of this spot, if it continues to expand Joseph would have much worsening symptoms regardless of whether it is tumor or necrosis. We are meeting with the surgeon who did his operation in December to discuss if surgery to this area would be an option. If it is an option, then it would remove a lot of the area, take the pressure off of his brain stem, and give us a biopsy and a conclusive answer as well. On the other hand it would be another surgery with another recovery. So we might have some tough decisions to make if it is an option. We'll find out tomorrow.

Joseph is doing well. He did not like being here at first, but after the needle came out yesterday, he has returned to his normal goofy and hyper self. As I am writing this, he is getting his eyelashes trimmed by Gillian. He was complaining that he couldn't see and we realized that his ridiculously long lashes are so thick that they are clumping together and blocking his vision. How many moms can say they've given their child's eyes a hair cut? She really is Super Mom.

CT scan

2008-06-25T13:17:00.004-05:00

Joseph's CT scan today did not show any increased pressure which is good. They did not have his most recent MRI to compare the images, but there did seem to be a larger area of abnormality. Like I said in the last post we knew we weren't going to learn anything today about the nature of this spot, and true enough they weren't able to tell us anything new. This increase could be swelling from an area of necrosis or true progression. We have to wait until next week when we go to St. Judes. So the plan is for Joseph to keep taking his steroids to help with his symptoms while we wait for next week.

Joseph did great and was able to have the scan without any sedation. It only took about a minute and Mom and Dad were both in the room with him holding his hands and telling stories. He completely understood that if he was really still then we wouldn't have to access his port, and he was still as a statue.

Thank you all for your messages, emails, phone calls, and prayers. We continue to need them through next week.

MRI Tomorrow

2008-06-24T01:30:00.005-05:00

Over the past two weeks and since the whole pseudoprogression thing, we have noticed that Joseph has started his head tilt again. It was gradual and we denied it as long as we could, but it is definitely back. This was the first sign that something was wrong way back in November. Over the past few days his walking has become increasingly unsteady. This is obviously very concerning for us.

They told us that even if this truly is psuedoprogression we may see some symptoms, but they appear to be increasing daily. After talking with his doctors at St. Jude, we are hopefully going to have an MRI tomorrow (Wednesday) here at Vanderbilt. The images will be sent to Memphis and they will compare it with the previous ones. Hopefully this will help us find out what's going on. Best case senario is that the spot is still the same size and shape and that his symptoms are due to whatever necrosis and stuff makes up the spot. Worst case is that the spot really is a progression and that it is growing bigger. If that is the case, then we will stop the Tarceva and start on a new chemo regimen. We think he'll start CPT-11 and Avastin, but we're not totally sure yet. He will also probably restart steroids regardless. We have no idea if another surgery would even be an option.

This is a very difficult time for us. Seeing him like this reminds us of the terrible days back in November. Please be praying for him and for us. We really appreciate it.

UPDATE:
Okay, now the plan is to get a CT scan here to see if there is any increased intracranial pressure. They will not be able to tell whether this is progression or not. We will be going to St. Judes on Sunday for an MRI and PET scan Monday and Tuesday which will be able to tell what's going on. So we won't find anything out until next week.
Please pray that Joe will take his medicine easily without much fight and that he will have great patience and endurance for the battery of tests that await. Thanks.

A few beach pics

2008-06-22T15:18:00.004-05:00

We had a really fun and relaxing trip to the beach. Oddly enough, it was not nearly as crowded as normal which was fabulous. We had great weather and Joseph and Holly became even more comfortable in the water and on the beach. Thanks to Nana and Grandad for allowing us to use their beautiful beach house and to Mimi and Big Daddy and Uncle David for spending time with us down there.

At the beach again

2008-06-16T00:04:00.006-05:00

We're back at the beach and the kids are loving it. Uncle David is here with us helping take care of the kids, and Mimi and Big Daddy also happened to schedule a vacation this week too. We have had a great time so far and will be coming back later this week.

Joseph and Holly are now experts in their floaty rings at the pool and are starting to warm up to the ocean. Joe gets a little scared of the waves, but Holly charges right in. Joseph is doing great and has been in the best mood since coming home from Memphis. We head back in early July for the next scan to make sure that he has pseudoprogression.

We don't have any video of the beach, but below are some videos that we were going to post before the last scans but never got around to it.

God is good all the time--A tribute to Peggy Southard

2008-06-10T08:24:00.003-05:00

Today is the anniversary of the passing of a dear woman and friend of our family's, Peggy Southard. She died of cancer one year ago today, and her life and love influenced many people, me included. I always marveled at how she made everyone feel like he/she was the most special person in the universe. After talking with her you felt like a million bucks. Even through every stage of her illness, she would say "God is good all the time." Amazing! In her honor, I wanted to share a neat story of one (of the many) way God has shown his love and goodness and mercy to us amidst some heartbreaking times.
I believe I shared a couple of months ago that Joseph lost his corneal reflex in his left eye through the 2nd surgery. It was a major concern b/c he wouldn't feel if anything got into his eye and it could potentially scratch his cornea and cause damage. So, I asked for prayer that God would protect that eye or eventually heal it right up. Well, since then he hasn't gotten anything in that eye. And, many people have commented on his long beautiful lashes and how many women would pay big money for them. Well, at the doctor's visit last week, Dr. Nick was trying to get his cotton swab to touch they eye to see if he had a reflex. He ended up giving up (not b/c Joe was moving, which used to be the case) because the eye lashes were too thick and he couldn't get the cotton swab through! He commented that it was a side effect of the drug he was taking, Tarceva. So, God provided protection of his eye by allowing one of the side effects of the drug to be growing extra long lashes. Have you ever heard of a drug causing eye lashes to grow longer (now, women, don't go looking for this drug---pretty sure taking it for the side effect would be a very bad idea)? I just thought that was so cool and had to share.
We miss you Peggy and love you, Southard family.

Pseudoprogression

2008-06-05T11:24:00.004-05:00

We are relieved to say that the tumor board was unanimous in that it looks like pseudoprogression. So, the plan is to stay on Tarceva and we will come back in one month for an MRI. Thank you all so much for praying for us. Joseph has been really happy and upbeat---definitely our most low-stress trip to St. Jude's so far, mainly because of Joe's mood. We are praising God for a good report (a rarity in our journey so far) and hope that Joe will continue to soak up and enjoy life as much as he is right now. Thanks to the Barrs for feeding us and entertaining us while we were here in Memphis, and thanks to Nana and Grandad and Davey for taking such good care of Holly while we had to be gone.

Tumor Board Meeting Today

2008-06-04T10:16:00.004-05:00

Hi friends,
Joseph has done really well so far. We did the "magic cream" before they accessed his port and I think that really helped with the pain. He just sat in my lap and we had a nurse at the ready to hold his legs, but I don't think she really had to hold him much. He had his PET scan then MRI and was finally able to eat at 3:30 in the afternoon. He had woken up at 4:30 that morning ready to start the day, so it was a long day to not eat or drink. What a trooper!
Today is the tumor board meeting, where they will discuss Joe's scans and all the different doctors (radiologists, surgeons, oncologists) will give their opinion on what this new mass looks like. Unfortunately, since they discuss many different cases, we won't be able to meet with our doctors until tomorrow morning at 9:30. Please continue to pray for clarity and wisdom for the doctors and that we would have peace no matter what the final consensus is.
We are off today so plan to go to Target (the big excitement for Joe P.) and swimming with Winnie Kate and Aunt Jennifer. Thank you all for holding us up in prayer. Joseph is really so happy and actually likes going in to St. Judes now, which I never would have believed possible. He is excited to see the doctors and play with the toys in the waiting room. We will keep you updated as we find out the results.

Heading back

2008-05-31T19:26:00.003-05:00

After another impromptu meeting with the oncologist on Friday, they told us that they want Joe to come back for a few more tests on Tuesday. These tests in a best-case senario would show that it is pseudoprogression, but they are just as likely to come back inconclusive. Hopefully this will give them enough information to make a better diagnosis. We will meet with our doctors again sometime after the tumor board meeting on Wednesday.

So we'll be going back to Memphis on Monday but we don't know how long they want us to stay. Thanks for all your prayers and messages.

Progression vs. Pseudoprogression

2008-05-29T20:47:00.003-05:00

Well, today's MRI showed that something was there. The MRI from March showed a shocking lack of tumor, but this one showed something in the tumor bed that was not there before. It is about 1cm x1cm and the radiologist called it a progression of his original tumor (meaning that she thinks it's growing again). Our oncologists, however, were not so sure that this was true progression but rather it could be something they call pseudoprogression. Pseudoprogression looks and acts like a progressing tumor, but it is actually due to necrosis (death of cells) and other inflammation that is attributed to radiation and chemo. Pseudoprogression would remain stable in size and could eventually go away. It is often seen around this time after radiation, and the fact that the last MRI was so clean makes them suspect that this is pseudo even more. Joseph does not have any signs or symptoms due to the mass that is there, but this does not help in the diagnosis either way because pseudoprogressions can also cause symptoms.

So, our team is going to the tumor board next Wednesday (the group of radiologists, neurosurgeons, and oncologists) to discuss his case. It sounds weird and non-scientific, but they are going to come up with a consensus on whether to call this true progression or not. So we have to wait until next week to see what the other opinions are. Joe will continue to take his current meds until it is officially a true progression.

Obviously, we are rooting hard for a pseudoprogression diagnosis. Unfortunately the only way to know for sure is another biopsy, but that has not been discussed yet and I doubt they would recommend it. My best guess as to what the course of action will be is that they will have him continue Tarceva and then come back in 4 weeks for another MRI, but I'm guessing.

What does this mean for Joe? If it is pseudo, then he will continue Tarceva and we'll go on like we didn't go through this horrible day. If it is true progression then he will stop this trial and we will move on to a new one. We have some other trials already in mind if this should come up.

So we're in limbo for the next week and probably for the next month. Please pray for the meeting next week, that the diagnosis would be obvious to everyone. Please pray for strength and peace for us as we are feeling frustrated, angry, and helpless. And continue to pray for healing for Joseph.

After Joe had his port accessed (it took five people to hold him down) he was great and did not complain or cry too much. He actually hugged all his doctors and played a lot with Aunt Jennifer today while we were talking to the doctors. We even had time in today's schedule for a visit to the Children's Museum with Jen, WK, and her Nana. We will be coming home tomorrow after PT/OT appointments. Thanks for all your prayers.

MRI this Thursday

2008-05-27T15:24:00.003-05:00

We had a great Memorial Day weekend. Joseph's friend, we'll call him Yogi, and our friends from Atlanta came up and we had lots of playing and fun. Joseph was so sad they had to go back.

We leave tomorrow for Memphis for the three month MRI. We have three days of scheduled tests and meetings, and Joe will have his port accessed tomorrow night. This will be the first time they've left the needle in overnight since radiation, so we are not anticipating a good night's sleep. He always freaks out with any blood draw or IV, so please pray for him to be strong and calm. The MRI will be first thing Thursday so we'll know the official results by the end of the day.

We are emotional and apprehensive about this MRI. He isn't showing any signs or symptoms of regrowth, but there could still be some growth. I guess this is how every MRI is going to be for a while. Please continue to pray for him and for us.

Also, if you've been following the other three year old boy with GBM in the links section, he is not doing well and is not expected to live much longer. Please pray for him and for the family.