Monday, May 28, 2007

About Bookworm #1

If you've been reading here any time at all, you've noticed that on an almost-daily basis, you read the antics of Bookworms #2, #3 and #4. I've been asked lately, "where is Bookworm#1?"

The answer, as we tell our other children, is "Bookworm#1 lives with Jesus." But here is his story:

On October 7, 1999, we went to our small group meeting. We learned a new worship song called "You are in Control."

You are my shepherd, I have no needs
You lead me by peaceful streams
You protect my life
You hold my hand and you guide my steps
You lead me through the valley of death....

and the chorus is "you are in control" repeated over and over again.

When we returned home that evening, the Bookworm King remarked that he enjoyed the song particularly because we had named our unborn son "Daniel Caleb." Daniel means "God is in control," and Caleb means "He is faithful."

The next evening, I went into labor. And the next morning, October 9, 1999, our firstborn joined us via emergency caeserean section just a few minutes after his heart stopped in utero.

The first 48 hours were a blur of diagnosing and misdiagnosing and rediagnosing and transferring to a larger hospital. Finally we were told that he had a metabolic disease, and he most likely wouldn't live through the week. That was Sunday afternoon. We prayed. Our family prayed. Our friends prayed. We got emails from friends as far away as Vietnam telling us that they were praying. There were many churches - the more the news spread, the more there were. Danny was on nearly every type of medical support available. We learned about them all - the names, uses, benefits and consequences of them. Not because we knew we should, but because our minds needed something to do. We sat by his tiny bedside. We touched him gently as we were able. We sang to him and read to him and prayed for him. Our small group met that week without us - and they prayed - actually, they prayed all night and into the next day. Many of them had been fasting all week. And many, many others were praying. And God decided to teach us all.

When we arrived at the hospital the next morning, Danny was off the ventilator and being weaned from the more life-supporting of his medications. The next day, he moved to the "Grow and Go" side of the nursery. There was no official diagnoses - just "probable metabolic disease." In three weeks, we were home. For the next few months, we were in and out of the local hospital with different problems - and finally, after some bungling by strange doctors and stupid decisions by other medical staff and such, we came upon the world's most wonderful pediatrician ever and we wound up traveling to St. Louis Children's Hospital so that Danny could get evaluated for mitochondrial disease. The results were inconclusive. But when Danny was three months old and still not gaining weight, we went back to Children's, and he traded the geneticists some muscle tissue for a permenant feeding tube.

Six months later, we learned that Danny had "a deletion or mutation in the mtRNA causing a cytochrome C oxidase (COX)-like deficiency)." Greek to you? Well, it was to us, too - but because God gave us both an insatiable desire to understand things, within a week we were Illinois's resident experts on COX deficiency. It all boiled down to this: every cell in Danny's body was having to work three times as hard as necessary to create enough energy for him to survive. COX deficiency is a metabolic problem in which the body is missing an enzyme necessary for producing energy from glucose. We were told that Danny would never smile, roll over, sit up, crawl, walk or communicate with us in any way. He probably wouldn't live another three months. After the doctor told us that, Danny grinned for the first time.

The next year was filled with milestones for Danny - he was sitting by the time he was 18 months old. And he was h.a.p.p.y. His smile lit up our house. He might as well have been screaming "God is good ALL the time, and ALL the time, God is GOOD." That child knew how to live. Every day was a miracle for him, and he did everything set before him with great effort and amazing accomplishment.

When he turned two, we moved back to Oklahoma to be closer to our family because the Lord was leading us (against medical advice) to get pregnant. We knew that we couldn't handle all Danny's medical needs and a newborn without our family. And God provided a job and a house and a pregnancy - all in the same month.

Danny was fairly healthy from 9 months until he was three and a half. That winter, he caught RSV and it caused permenant heart damage. The next two years were a constant struggle to live in spite of his medically fragile body. His feeding and medication schedules were complicated and required constant management. His calendar was full of planned doctor's appointments and therapy sessions - all of which would have to be canceled at a moment's notice when he would suddenly (as in over an hour) become so ill that an emergency visit to the hospital was necessary - he might stay a few hours or a few weeks.

We struggled with a desire to shelter him from the world (one doctor advised that he never leave the house - he needed to live in a bubble) and a desire to let him be a child and have a child's life. We could have probably kept Danny longer if we had kept him to ourselves - but he had a personality that begged to be shared. We felt that the Lord wanted us to let Danny's light shine, so that was what we did. He went with us to church. He attended school at The Little Light House - a local Christian school for children with special needs. He played with his brother and cousins and family friends. We all watched his joy and prayed that he would live.

And he did - that child packed a lifetime of living into five years, four months and thirteen days. And when we had handed him back to our Heavenly Father, it was with gratitude for the time we had had with him and the things he had taught us, and a very heavy heart because it was over. When his casket was lowered into our newly acquired burial plot, we were angry. How could our God - the Sovereign - who was in control - allow Danny's light to be snuffed out after only five years? We wept on the way to the church from the private graveside service.

And then we received the answer to our question. When we walked into the sanctuary for Danny's memorial celebration, nearly every one of the 700 seats was occupied. Every person we spoke with could pinpoint a moment with Danny that changed them in some way. All of our local community was there. And so were some friends from Illinois - and several others (including that first fantastic pediatrician) called us, and many more had sent their condolences. Once again, over the next few weeks, cards poured out of our mailbox as those who had prayed so hard during Danny's first few days let us know that they were praying for our family's restoration and for the healing of our hearts.

In just five short years, Danny changed his world one smile at a time.


Our Peculiar Life said...

Beautiful post. I am sitting here in tears. I wonder if he and my Jacob have met yet. :-) I hope they are up there playing together.

Classic MaMa said...

This was so beautiful. I don't have any other words except: bless you.

Kathy in WA said...

This is such a beautiful post. Thank you for taking the time to write the story of your little one. How precious to see the lives that were changed by his life.

Duckabush Blog

A&EMom said...

I'm glad you shared Danny with all these people too. I can say for sure Danny made me a better mom. So much love from me to you.

jugglingpaynes said...

I was drawn to look back at some of your entries that I missed and read this. What an amazing story and a beautiful tribute to your precious son's life. Everyone says God gives us what we can handle, but I say He gives us what we need. Look how many people needed this precious little boy to touch their lives. What a gift he was. And you are so generous to share his story with us. Thank you.
Peace and Laughter,

HomeSchool Mommy said...

I'm so glad I was led to your blog. I saw your comment on Heather's page and saw you live in Oklahoma (as do I--in Norman)...and I homeschool my five year old daughter.

I will be back to visit often!

MarshaMarshaMarsha said...

What a beautiful smile he had! I wish I could have known him this side of Heaven.

Thank you for sharing your story. I am praying for you!