This week I am reminded that it’s the third anniversary of S’s brain surgery. It’s hard to believe now that our beautiful, smart, kind, compassionate, loud ratbag was ever ill. It’s even sometimes hard to recall what life was like back then.
I remember it was tough, but when you’re raising twins, nothing really seems too easy. I remember the isolation and fear I felt when doctors warned that his symptoms indicated something like muscular dystrophy or cerebral palsy. I remember the anger I had when well-wishers told me everything would be ok. I remember the guilt I felt because instead of acting earlier, I’d kept telling myself that I shouldn’t compare my children because they are separate human beings and that sometimes one is ahead in reaching milestones, while the other lags. I also remember the moment an intern doctor told me S wasn’t ok and the figurative punch in the gut she gave me with her accusing eyes. I remember the weeks waiting for specialist appointments and tests feeling like years. I remember the surreal night before surgery when we slept in a dark hotel room, our beautiful 22-month-old son snuggled between us while his twin sister was 200km away from us, neither of them old enough to know why.
Actually, it seems like I do recall what life was like. It was scary and unknown and very busy.
I don’t remember much about his diagnosis only that I was confused and relieved. I vaguely remember the hours I spent consulting Dr Google about Arnold-Chiari Malformation & Syringomyelia and decompression surgery. I remember the 5 hour surgery and the 9 days in the neurology ward of the children’s hospital. I also remember feeling like a fraud and being desperately sad that I couldn’t help the parents who were watching their beautiful babies fade away, while I waited for my own to wake up, recover and go home…
S, recovered beautifully. What was supposed to be the first in a series of operations was all he ever needed. Within weeks he had stunned all of his medical team by walking unaided. He excelled in the 5 developmental areas he’d been delayed in prior to surgery. He graduated from his early intervention class at the end of the year. Now, 3 years on, it is almost unfathomable that he had such a rough start in life.
June is now a bitter-sweet, reflective month for me. I felt I needed to write about it today. So, this is a tribute to the hardest year of our lives. It is a tribute to our wonderful friends and family who helped us get through. And it is a tribute to all the parents out there who are navigating their own hard times. And most importantly, to our amazing S: ever our non-conformist. We love you all.