My next project

I am brainstorming for my next writing project. The premise is autobiographical. I want to tell Tycen's story, and my story by default. I would love to raise awareness of NF and weave a tale of the hardship that can befall a family because of it. I guess it won't be too much weaving to do, since it's already written in my permanent memories. For those of you who are unfamiliar with our journey so far, I might as well bring you up to speed.

Tycen has Neurofibromatosis Type 1. It is one of the most common genetic diseases in the population. It is a dominant disorder, but well over half of all cases are a mutation, like Tycen's. Tycen was born with strange, light brown birthmarks. Fortunately, or unfortunately, as the case may be, I had watched a discovery health program of NF and knew right away that my 2 month old baby had NF. It took the doctors a little longer to diagnose it.

We didn't learn until Tycen was 18 months old that his legs were two different lengths. Bone disorders are one of the more common NF complications. We had noticed him walking strangely and assumed it was the fatty foot he had. It turned out that the fatty foot was actually a tumor and that the walking problems were because his legs were almost an inch different in length.

By the time Tycen was 4, we knew that he had to have his legs evened out. The difference had grown to almost two inches. Last summer, Tycen had surgery to implant a bone stretching device to lengthen his shorter leg. It was broken and every day, four times a day, we turned a screw to pull the break apart a quarter milimeter at a time.

The surgery was last July and Tycen is just now walking unassisted again. He lived in a wheelchair for three months, went to a walker, and then back to a wheelchair, and then the walker again, and now he is finally free, even if his steps are still timid. We have spent many nights on hospital pull out couches, Eric and I. Tan and Roman have had a lot of grandparent time. There was a strain put on all of us that sometimes felt like it was too much.

We're not done. Tycen's legs continue to grow at different lengths. He now has two tumors, one of which will be removed and we pray the other doesn't get that big. Tycen will have several small, disfiguring tumors when he gets older. For now, we hope they are going to show up on just his trunk, which is what it looks like at this point.

Tycen also has Asperger's Syndrome, which is on the autism spectrum. It is essentially a social autism. He is extremely high functioning, learning to read and progress to a second grade level before kindergarten and completing math at a higher level than that. Autistic disorders are also very common in NF.

That's where we are now, in a holding patttern, as families most often are with NF. We wait for the next thing to pop up. There are worse, much worse, manifestations of NF, but we choose not to face those until we have to and pray that we don't.