It’s been almost two years since I last wrote about Ailbe and in that time, that seems so long, yet so short, so much has happened.
We’ve been seizure free for two years and we are about to embark on the oh so treacherous VEEG and wean discussion process. Our summer vacation has turned from a family time together, to a ball of worry and stress. Last time we weaned, and every time we’ve weaned. “They”, come back. Whether it was 6 months or 4 years they came back. That is, TERRIFYING to think about. I’m obviously hopeful and praying they won’t but I’m haunted by the past. I equate the feeling to being sucked into a hole filled with tar and just slowly sinking and losing a little more breath each inch. Absolutely, horribly, frightening.
Despite being on a heavy duty, frontline seizure medication (Sabril), Ailbe has begun to read! Yes, you read that correctly, READ! Holy mother of everything, my kid that we were told would not speak, is beginning to read! It’s insanity at its finest. I’m so blessed to experience this life with her. I certainly owe much of her success to her amazing team of teachers at school (speech, OT and SDC) but I think a lot of it has to do with her seeing other peers read and being such an innately motivated child. She has always been a strongly driven kid wanting to succeed and even now knowing her limitations but not believing them to be fact. She amazes me each and every day!
Despite battles with impulse control daily for short periods of time Ailbe continuously surpasses all that was predicted of her diagnosis.
Ailbe can: dress herself, use the bathroom independently, brush her teeth, comb her hair, make a sandwich, pour a drink, peel her fruit, draw a legible picture, ride a bike, ride a scooter, ride a skateboard, do the monkey bars, swing on a swing, count to 100, blend CVC words, read basic sight words, sing songs, dance, give the best hugs and kisses, use scissors, work the Apple remote 😉, type, use the chromebook, use an iPad, call people, recite her address, city, family full names, knows all colors and shapes, can swim like a fish (always has), loves unconditionally, tell jokes, make her bed, tidy up her toys, manipulate play doh, build towers, play make believe games, help bake/cook, make friends and most importantly Ailbe understands kindness.
Ailbe epitomizes courage, strength and determination. She will persevere. She always does.
I just hope we can.