My name is Adam Hezekial Rose. I live in Nashville, Tennessee, with Pegeen Michelle, my wife of ten years, and our two children, Abbigail Pegeen, eight, and Devon Tanner, who is four.
We seem to be a normal, happy family. My wife and I have a solid marriage, I have a good-paying job as a high-powered attorney, and we have two beautiful kids. We seem to have it all.
What people don't see are the many tears, the pain, or the fear we face every day. For you see, our young son is handicapped; sadly, he will never get any better.
If anything, he will only get worse and die.
Doctors don't give him but a few years at best. They think he will be dead before he reaches the age of nine. That is, if he lives that long.
When he was born, Devon seemed to be bursting with health. Good color, strong, lusty cry, ten tiny fingers and toes. He was gorgeous: a perfect "mini-me". :) He seemed to do well at first; at a few months of age, however, we started noticing signs that something wasn't right. He cried all the time (colic), he didn't seem to be focusing his eyes on us or on objects, and worst of all, he couldn't hold his head up without it falling to one side or the other.
It disturbed us, so we took him to the doctor, who suggested we have him tested; he suspected something neurological was going on.
We subjected our baby son to a whole battery of tests. MRI. Cat-scan. Numerous pokes, proddings. He screamed when we didn't have him sedated; oh, how he screamed! It was the worst ordeal we could have faced as his parents--or was it??
We felt horrible for having our baby go through all of these tests; we did, however, feel we had to have some answers as to why he was the way he was; maybe knowing what was going on with him would give us some semblence of order, some peace of mind, perhaps.
Incredibly, there was worse to come. The diagnosis. Canavan disease. A fatal, neurodegenerative disease causing increasing disability and loss of functions: walking. Talking. Seeing. Our baby would eventually become blind and require total care. He would, more than likely, be dead before he reached the age of five; if he lived longer, it would be a miracle, doctors told us. They said there was no hope for him; all we could do was make him comfortable and take care of him as best as we could.
The news was earth-shaking. It was probably the worst possible thing that could have ever happened. We looked at each other, tried to pin blame on one another, but we knew that it wouldn't do any good. I was really the one to blame. I carried the gene and unknowingly passed it on to my son through my wife.
Incredibly, Abbigail, our other child, didn't have Canavan's disease. She was tested, sailed through them just fine. She is as healthy as they come.
Our son, meanwhile, was doomed to a future of skilled nursing/medical care. Doctors. Hospitals. Tubes. Pain. Test after test after test. Worsening disability. Death.
We watched helplessly as Devon got worse. He lost one skill after another until he was a shell of his former self. Now at the age of four, he cannot see (he can hear, though), talk, walk, even feed himself or go to the potty. He has to have medications delivered through his feeding tube every four hours to prevent pain, seizures, other ills. He is too weak to do anything for himself. He has to lie in his hospital bed, or when up, sit in a wheelchair, strapped into place, because he can't even sit up unassisted.
He is a beautiful child but will never play sports. Have a girlfriend. Go on a date. Learn to drive. Go to college. Get married and start a family. Have a job. He will always require nursing care; the only thing that can be done is to keep him well, happy, comfortable.
Sometimes even that isn't enough, as he ends up in the hospital with pneumonia, the flu, or some other illness. When he gets sick, he turns grey and his whole body shuts down. Then doctors and nurses have to work like hell to try to save him while we, his worried parents, have a bedside vigil over him and utter desperate, empty prayers to Heaven.
I don't know why we even bother to pray to God when our son isn't going to be around that much longer. It seems ludicrous!
If it were not for the group I belong to, I would have probably have had Devon committed to an institutionalized setting long ago; it is hard caring for a child like our son. I know that I am not alone in my struggles; there are plenty of other parents who are facing the same thing, if not, the needs are similar in some cases. They give me a reason to bounce off someone when I am having a bad day and they offer me plenty of support and advice to make what we are facing somewhat easier.
Some of the stories are as sad as mine; others, not so much, yet we all face something to make our lives a little more "exciting" or eventful (if you can call it that). We meet two times a week at each other's houses, to get the latest low-down on how well our kids are doing (or not), prayer (though I really don't participate, but I really appreciate them thinking of us when they do pray for us), a shoulder to cry on. It's great therapy, and the kids get to interact with each other when they are well. It's wonderful!
Well, it's about time to get Devon up and fed/medicated, so I'd best go. I will write in here again another time with another update. Until then, this is Adam Rose signing off! Take care and talk to you soon!
~Adam Hezekial Rose, Devon's dad. :(
The piccy was one I found on the Internet. It suits the mood of this entry because we are facing our own Storm; we don't know what the future holds except death for our youngest child.
