"So if the tests come back normal, are you prepared to deal with possibility of never knowing?"
The genetic counselor asked me this question while Dr. L., the geneticist, was putting the test orders into her computer. I had bonded with her the day of Zay's never-ending appointment in May. When she asked me, I was prepared to be totally honest.
I would be OK with not knowing exactly what caused Isaiah's disabilities. After years of testing, I have come to realize that there are just some things that are out of our control. It would be wiser for me to put my time and energy into the things I can change...the things I can influence. I am not prepared to put Isaiah through the rigors of anymore testing.
Last Friday at 11:30am, Dr. L. called with the results from the latest batch of tests. The Lesch-Nyhan test, the spectroscopy, etc...all "within normal range". No indications of any metabolic or mitochondrial disorder. No poor prognosis from a rare genetic condition.
Thank you, Jesus.
Isaiah has cysts in his brain---that we know. He has cerebral palsy and severe mental and physical handicaps. And we don't know why. We will probably never know why. What I do know is that in 6 short years, my son has taught me a lifetime of lessons.
And really, that's all I need to know.