Challenging week in our home. Teenagers breaking rules. Disappointment in those who seem to disvalue friendship. Grief over the unfortunate choices of others and how it is affecting those who love them. Concern over health issues of friends and family. And an anticipated diagnosis didn't come.
About six weeks ago, Dennis and I took Kacy to Seattle Children's Hospital where we met with several specialists who encouraged us to do some genetic testing. A neurodevelopmental specialist basically prepared us for the blood tests to confirm something called Fragile X Syndrome. For the past six weeks, I have watched the sun come up while researching this syndrome, reading books, watching videos, exploring blogs written by parents of children with Fragile X, joining facebook groups around this syndrome, and talking with my close friends and some family about it. The strangest part, for me, was coming to terms with the fact that we didn't have this unique little boy who was writing his own book with his varied assortment of quirks, behaviors, and preferences. To learn that there were other "Kacy's" out there was strange to accept. For so long we have felt as if we were isolated in our journey. Even stranger to accept was that there are some of those children whose appearance so strongly resembles his, they could be his brothers! But didn't take long before I realized this anticipated diagnosis was actually providing a sense of relief! Kacy seemed to fit perfectly into this box labelled "Fragile X." Learning just how many Fragile X Syndrome characteristics he has and the fact I may now be able to answer, "Pardon me for asking, but what IS Kacy's diagnosis?" brought a peace within me that was ten years in the making. There is so much about his care that would be simplified by this label. So many loved ones that could now come to terms with Kacy, the reality of what is going on, and how we need to be handling it. Support groups. Mailing lists. Meetings to attend and clinics that had waiting lists we could get on. A direction for the care we so desperately want to provide him.
But in less time than it takes to read this post, that diagnosis was eliminated.
"The blood tests did not come back positive for Fragile X, or any of the 250 most common chromosomal disorders,"she said.
Silence.
"Mrs. Kincaid?"
"I'm sorry. I'm just so shocked."
"Me, too, Mrs. Kincaid."
No comments:
Post a Comment