Tiny was diagnosed two years ago, almost to the day, with this rare genetic disorder called TSC. We found out after what now seems like two blissful years that he has brain tumors. And seizures. And delays associated with those. And for the following year, I was in hell. I had to medicate myself, see a psychiatrist. I had no escape from the hole that biology dug for me until he was entered into the developmental preschool, and only then did things start getting better.
With surgery on the horizon, we are currently undergoing a ton of pre-ops, one of which was with a psychologist... whom I asked to evaluate him for both ADHD and ASD. It was a can of worms that I felt needed to be opened in order to help him. But at the same time, adding another diagnosis is something like how an unexpected punch to the gut feels. It knocks the air out of you, tears spring to your eyes, you can't find your voice, and pain sings through you from the tips of your extremities and pools in your stomach, roiling around until you feel the need to throw up everything from the last 24 hours.
He's autistic now, too. I have to remind myself that he always was. It was there before the label was placed. Before the chart was signed and the questions answered. I suspected it. I knew. And still, the grief of understanding what this means for him in the future keeps sneaking up on me, catching me when I'm still and things are quiet for a moment. The tears run down my face. I'm not sad, not really. I'm not angry. I'm in limbo. Mommy limbo.
I want to do what I can to help my child, but I feel so buried under ...everything. I can't be the first person to have to dig out from under this. I won't be the last. I want to say I'm stronger and braver than this, but it's just a front. I do what I do because I have to. For him, for me. For my family.
I just hope I'm doing the right things in the right order to make it better for us all.
No comments:
Post a Comment