Lately when I sit down to write here, tedious updates about A’s medical stuff spews forth. Life with A is so, so much more and yet still, every moment is tethered to how that medical stuff is going. Every seizures, and every minute between, is weighted. I hold my breath for the former, and my breath holds me for the latter.
Some crappy ones lately – long and scary. I rock him and coo, “hang in there bud, almost over.” I stroke his hair and coax, “take a deep breath, relax.” I know these words are more for me tho, that I am speaking to myself. A listens but he is busy managing himself in his own way. Then a seizure grasps him, his eyes dart to mine in panic, and I try to smile, I confirm he will be okay. It is for both of us that I keep steady. It is for us both that I soothe, comfort, smile. Together we wait for it to be over, and together we savour the time in-between.
E has started taking steps! He stands, steadies, makes sure someone is watching, and steps forward. Beautiful, courageous, confident, joyful. It is just fabulous, every time. Soon, I’m sure, he will be running. A few days after his first steps, he turned 9 months. Unbelievable, really.
A has enjoyed his own fabulous milestones. At a few months shy of turning 3, he has figured out how to get himself into sitting. Previously, it was something we would plop him into but now he transitions! Beautiful, courageous, confident, joyful. From sitting to all fours and back again.
He also had his first (of 8) horse-riding lessons. Too sedated and ill to attend last session, he was moved to the Aug/Sept round – so thankful he is so much more aware and awake and happy to enjoy it. Dude rocked it – so excited, unafraid. So open and free. I panted alongside, simultaneously holding him up on the horse, resisting his tendency to throw himself backward, yet still encouraging him to sit up straight. I tired to let my muscles celebrate his joy vs. tense from worry. We’ll both get stronger, I’m sure.
Back to CHEO on Monday, to meet with the Metabolics clinic this time. Apparently his poor reaction to valproic acid might indicate… something? Will know more soon. I’m not looking forward to more testing, but definitely interested in whatever more can be learned. Not sure we’ll ever discover “an answer” or anything, but always great to get more clues and find out new things that help him feel well.