When it’s invisible.
W arrived into the world with a cry, and then he stopped breathing. His heart stopped, it took the team 3 minutes to resuscitate him and his APGAR score at birth was 3. Barely past 28 weeks gestation, no reason other than spontaneous labour for his early arrival. Nobody knew what the future held for him, and how long that future was; an hour, a day, a week?
He will be 4 soon, and he continues to amaze me everyday. He loves his little brother, he’s obsessed with dinosaurs, his favourite colour is ‘orange like Flop from Bing’ and too many other fantastic qualities to list. He’s also got additional needs.
This is the first year during ‘flu season’ that I haven’t had to sit in A&E with him, waiting for him to receive steroids and oxygen support. This is also the first year that he walked far enough away from his caregiver for me to receive a phone call at work, from the police, to inform me they had met him and had reunited him with his childminder and brother. When asked about the incident, his response was ‘but I’m not lost, I’m here with you mummy’.
Every day is meticulously planned, every detail relayed to him constantly. If he asks whats for dinner, I tell him it’s a surprise as sometimes I’m so exhausted coming home from work that I’m too tired to cook what I had originally planned and I don’t have the energy to deal with the fallout a change of plans would produce.
He has a diagnosed mobility disorder that affects his motor planning and coordination skills. It means he’s the child that walks into a tree, falls over on a stationary bus, walks into a wall, and, when tired enough, completely ignores one side of his body.
There are so many aspects to being his parent that others chalk up to him being ‘hard work’. He’s considered disabled, but not enough to receive support that’s available. He’s considered disabled, but not enough for people to take it seriously. The most common and probably most inconsiderate thing for anybody to say to me is:
Don’t worry, he’ll soon grow out of it.
He won’t and that’s okay.