Stories of Other Loss
Inspiration
by Carol Malone (Bryan's Ma), , U.S.A..
I have found inspiration from this site. My son is 10, has been blind, mentally and physically handicapped since birth. These years have been the best of my life. He has always been a happy child, loves music,swimming,travelling, being in social situations, and people (he has his own way of communicating), and those who "get it" understand him.
He has been a healthy child all along. Last year we found out he was in end stage renal failure. So, we thought, we'll find out about dialysis, and transplant options.
They sent us to the experts at Jackson Memorial. In a ten minute conversation, all of our hopes were obliterated.
Bryan would never make the top of the list for a donor kidney. Because of his other handicaps, he has a higher chance of rejection. My husband and I were not a match. We could have put him on dialysis, but there is a high chance of infection. Especially peritoneal (sp) dialysis, which is most often administered to children. Bryan, because of his mental and physical ability, wears diapers, which makes infection inevitable. The infections are extremly painfull, and after one or two, dialysis is no longer an option.The cure for the infection, causes deafness in most cases. (Bryan's keenest sense, and his love of music, is his greatest enjoyment). My husband and I, along with the specialists, decided to maintain quality, not quantity of life. It was THE hardest decision we ever made in our lives, and granted, he is still here, but the quality has been worth every minute.
We have been tested, at a point where we were watching him breathe, shallow, almost nonexistant. We asked each other if we'd had a change of heart, and we both knew it was right. Thankfully, it wasn't his time, (and we have had months of good times since). Anyway, as you have seen, I haven't lost him yet, but I can certainly understand what these parents have/are going through. I am at home full time, taking care of Bry, and I have access to this site. Who knows, maybe we can help each other...
With heartfelt care and concern,
Carol Malone (Bryan's Ma)
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