So here’s the thing…
Many of you haven’t known me. Haven’t laid eyes upon me for real. You don’t know how I was or wasn’t, what I could do, what I had difficulty with or was challenged with. You haven’t known and yet, you still came to support me. Thank you.
I’m 9. Sometimes I get stuck in time and go back to when I first was able to answer this question and will tell you, “I’m 6”. 6 years old was the first time I could answer that. I couldn’t consistently answer until I was 8, and if I’m confused and you reminded that I’m not 6 or 8, I’ll recall that I’m 9.
This may seem to be such a little question, but the ability for me to answer that is so muddled with all that goes on in my head that I can’t answer it clearly or easily. You see, I have Autism. I also have Cerebral Palsy, Sensory Processing Disorder and Epilepsy. The epilepsy is what’s brought us here.
When I was diagnosed with Cerebral Palsy at 9 months old, my parents were told that if I didn’t have a seizure by the time I was 2, the chances of me seizing dropped dramatically. 6 days before my baby sister, O (now 5) was born, I had my first seizure while watching “Finding Nemo”, sitting next to my Mom; my body comforted by her right arm around me.
I was as stiff as a board. My eyes fixed. My body unmoveable. Mom and Dad thought I had possibly choked on something as my tongue was also fixed, I drooled and made a noise that sounded mostly like snoring. It came to them that I was seizing and they called an ambulance. Taking away that time seems to stand still in a crisis, it was figured out that I seized quite a long time. A long time.
It was barely over a month until my 4th birthday. The timeframe of ease my parents were given of 2 years (old) until they could breathe was 2 years past. To say this day took their breath away… to say this started an unforeseen journey would be too easy, for what we have experienced together has been more than a journey. It has been a metamorphosis, an education and a lifetime already lived.
…A test of strength, resolve, determination, morality, love, compassion, empathy and… well… truly a test of everything you can think possible.
I think so far, we’re winning.
Even with a hemispherectomy, we’re winning.