Jenelle's Journey

I spoke with Dr. Phillips today and he informed me that Jenelle's recent test results were normal. The tests included a study for metabolic disorders, a test for a chromosomal disorder called Praeder Willi Syndrome and a panel on her chromosomes for any abnormalities. Jenelle's chromosomes are a "46XX", which is normal for a female (would be XY if she was a boy! ;) This is really great news, we are so thankful, and yet, still no answers.

Also, on this day I scheduled Jenelle's ABR hearing exam for November 21, 2003. The hearing exam must be done while Jenelle is sedated, so again, like the MRI, there is a long wait. I spoke with the Audiologist yesterday, and she said we would have the results immediately after the exam, so that is encouraging.

They say to have a child with a disability is like going through the grieving process, because you "mourn the loss of the perfect child." Prior to getting the DNA test results, I really started to experience these emotions. Simple, everyday things like going to Babies R Us for formula, or going grocery shopping are a constant reminder that our 10 month old is not like other babies her age. I see parents with children "sitting" in the carts, pulling their parents hair, or tugging their arms, or pulling boxes off shelves - it is very depressing. For me personally during this time, I could be fine one minute, then crying the next. I will be happy while grocery shopping, and in tears when they ask if I want to "donate a dollar to Jerry's kids". It truly is a humbling experience. The news of the normal results is a great relief, but still we have a lot of questions. On a personal level for me, I have started to refer to Jenelle as a "special needs" child, which I feel may be a good sign that I'm learning to accept this challenge in life.