When Mike was diagnosed with Congenital CMV, I pictured a wheelchair and a ramp up to my front door. I knew absolutely nothing about disabilities. I thought you could always see ‘what’s the matter’ and I’d never had any insight into caring for someone.
It’d never really crossed my mind that anyone could find themselves, ‘disabled’ or somebody’s ‘carer’.
After plenty of hospital admissions I became acutely aware that I was the expert in Mike. It hit me, that doctors can’t fix everything. They can medicate or offer therapy, but for kids like Mike, there isn’t a always an answer.
When we were told that Mike had Congenital CMV, the doctor could list things that might affect Mike. He could be blind, deaf, have a learning disability or cerebral palsy, but the words cannot come near to the realities of how disability and differences can affect a person. Some stuff you just can’t see or list, and even if you could, it doesn’t come close to appreciating the challenges that go with it.
I’ve thought, how I could explain Mike’s ‘disabilities’ but it’s impossible. He’s Mike, and if I’m honest, his ‘disability’ is the best thing about him.
He unquestionably loves and trusts people. Kids at school seek him out to play because he’s so kind hearted. He has one thing on his mind always, having a good time!
He’s the most appreciative person you’ll ever meet. After his friends parties, he always has the biggest hug for the host and their parents. He devours the party bag, and the smile and excitement to be there, is just completely beautiful. He makes me so proud but it’s not me who made him this way, it’s all him.
He’ll refuse to do anything he doesn’t want to! Quite simply because if his hearts not in it. He’s not! This can be hard work to navigate as sometimes as in life, we have to do stuff we don’t want to (…like eating and wearing clothes…) But at least he’s honest (that doesn’t help my arms and back chauffeuring him from A to unwanted B, all the time!)
He remembers everything! Good, bad, ugly and inappropriate. Watch out when Mike’s about, haha!
He is the most determined and successful person I’ve ever known. Nothing stops him. I remember earlier this year, he taught himself how to kick a ball, just to be like his big brother. Such a difficult skill to coordinate, but he can do it now, against all odds and missing most of the typical developmental milestones, to get there.
When his Neonatologist told me, he had CMV, she said “he’s likely to have problems” – she didn’t tell me the stuff I know now. That I’d find parenting him easy. That he’d make me laugh every single day with his funny ways. She didn’t explain that problems might be no sleep and me generally tearing my hair out, in an attempt to control his environment just to make him fit more easily with life’s expectations. Or that my love for him could move mountains. She didn’t tell me I’d cry tears of joy nearly every single day, or that at times he’d make my heart hurt so much I’d sob.
Thing is, all this is just life stuff. For us it’s just absolutely magnified, all the time because he’s ours. I never lived so much, or felt so beautifully human until Mike was in my life.
Doctors don’t always have the right words, the time or the insight and it really struck me reading about the new Down Syndrome screening, that it’s so hard to imagine yourself being happy and being like me, with a disabled child when a doctor is talking at you, telling you how it might be. For me the words and the reality are so, so different.
Admittedly I think I’d have seen my future self pretty miserable at the start, but I’m not. Yeah I have regular fights, heart breaks and real worries over things for Mikey, going on all the time, but that goes back to living and us just doing a lot more of that these days than most.
Life is never dull and boring here!