It was right before our second visit with a geneticist when my sister asked, “Why?” How many times had I asked that question throughout my childhood and now as a parent? The previous visit to the specialist resulted in no answers my mother’s instinct didn’t already know; Amy’s differences were caused by genetics. Whose genes were the cause, the doctors didn’t know, but in the back of my mind I blamed mine. (I am not aware of any special needs on Todd’s side.)
At that first visit the doctor also recommended another visit in two more years as genetic tests were improving so quickly. I missed scheduling that next visit by a whole year. Amy was five, enrolled in an SLI-Kindergarten class, showing progress and many additional needs when my sister asked why we were bringing her again. “How’s that going to change anything?” I had pondered this same question, and it was one of the reasons I delayed the appointment. Amy was Amy. No genetic testing was going to change that. No special shot or treatment would make her “normal.” My only hope was three-fold: more information for the medical field to study, the possibility of a label that would allow us to connect to other families, and Ali, our other daughter. Even though she was only three, I wanted information to help her understand as she grew up.
At the appointment, the doctor informed us there was indeed new testing, a “fish tail” test. This test looked at the end of the genes, which previously were darkened so much they were blacked out. I don’t remember anymore about that appointment. I’m sure we revisited the information we’d given three years prior and updated it, but now we just waited for the test results.
What we eventually found out was the new test didn’t find anything out of the ordinary. We still had no answers to what genes caused the differences. We still had no label to link us to other families or specific support groups, nor did we have more information for Ali. It’s been eleven years since that visit. There are still days when I wonder if my genes are the cause, but then I read or hear something that reminds me to let it go today. Amy’s fine. I’m fine. We’re all fine.