The Spirit Gets So Big - When the Body Gets So Small

My 5-year old nephew, Jason, died in his sleep on Friday night. He finished his battle with a rare disease called cytochrome c-oxidase deficiency disorder. I'll give you the rarediseases.org definition:

Cytochrome C Oxidase Deficiency is a very rare inherited metabolic disorder characterized by deficiency of the enzyme cytochrome C oxidase (COX), or Complex IV, an essential enzyme that is active in the subcellular structures that help to regulate energy production (mitochondria). Deficiency of COX may be limited (localized) to the tissues of the skeletal muscles or may affect several tissues, such as the heart, kidney, liver, brain, and/or connective tissue (fibroblasts); in other cases, the COX deficiency may be generalized (systemic).

Jason's case was systemic... Which is too much for a little body to handle.
If you'll notice, I said Jason finished his battle. I don't think he lost it. His cardiologist has been telling us for the last two years that his heart was so bad, it was unusual that he was still alive. I think the last two years were grace, and if anything, Jason stayed with us as long as he could.

It's not that it's not hard - I just think Jay simply finished. Believe me, I've cried many times over this - and discussed things with friends covering everything from "Aren't you mad at God?" to "How long will he live?"

No. I'm not mad at God. First off, I know there are no guarantees in life, but there are a few guarantees in death... Jason, for the first time in his life, is whole - healed, and able to use his arms and legs as he sees fit... Second of all, Jason was such a joy to be around. He was funny, intuitive, and for all the ways his condition wracked his body, his brain was perfectly functional. I'm grateful for that.

I'm even grateful for his little
rebellions (which were pretty funny. Just a few weeks ago, Jason got in trouble at school once for driving his wheelchair too fast down the halls).

I hope you enjoy the photos - they're all of Jason and the things that happened to us on our adventures together. Of particular note is the day Cinderella kissed him. He was so thrilled, he wouldn't let me wash the lipstick print off his face. I asked, "Jason, how is it that you always wipe MY kisses off, but you want to keep Cinderella's?" He just giggled slyly and shyly and sped away.

One of my favorite singers, Jan Krist, wrote a song I think encapsulates how I feel about "Speedy" (what I called him after several wheel-chair drag race events). In it, she writes, "The spirit gets so big when the body gets so small..." Jason, though small in size, was such a giant. He taught us - specifically my sister - just how much we could handle. He taught us honesty - and how to ask for help. He was the reason my sister was able to leave an addicted husband, and I feel was responsible for bringing my family closer together. (Even though, at times, the things I taught him upset his mom - namely his repeated exclamations of "My Bones!" every time Jill hit a pothole while driving...)

I picture Jason in Heaven, healed, running around and discussing things with whomever might be interested in hearing about video games, Willie the Whale, and his endless list of female admirers.

But I am so sad - I'm horribly sad, and I'd give anything to spend another evening with him, but I guess I'm feeling that his spirit is so big that I couldn't possibly forget.

My other favorite singer, Bruce Cockburn wrote a song called Closer To The Light - It was his homage to a musician who died unexpectedly, and in it, he expresses a lot of what I'm feeling now:

Death's no stranger - no stranger than the life I lead
Still I cry, and I begged to get you back again.

Gone from mystery unto mystery - Gone from daylight into night
Another step deeper into darkness - Closer to the light.