‘I’m not sure how much longer I can carry him. And that makes me sad’.
This is a conversation we have at home frequently.
At just over 20kg Small is way over the limit of safe lifting and at just over 104cm high he’s also way over the limit of safety full stop. Sometimes it’s all I can do to contain him in my arms when my little boy starts to have an excited flap as we go downstairs for breakfast… Food, Mummy? Daddy? Woohoo!
At school – as he was at nursery – he is hoisted everywhere and by all accounts thoroughly enjoys the experience and, naturally, it protects the backs and the knees of the staff. And I know it’s brewing – for all the right reasons – at home as well. I have knocked it back on quite a few occasions, but it’s time…
We have had the people in to measure up our stairs for the stairlift, the ceilings for the track for the hoist and the bathroom for the most overly engineered bath in the world ever. There is a changing mat on top, which then lowers the bath-ee into the water, and then the bath itself raises up on hydraulics so the carer – Mummy?? – can wash the bath-ee in comfort. Bath-ee is a word, right? It is quite staggering. And thank you to whoever invented it as it means our small bathroom can accommodate it.
But my house is about to fill up with more Stuff. More Things. And it’s really In Your Face Disabled Stuff this time. It’s not a brightly coloured therapy mat or a gently re-designed high chair it’s a lot of quite ugly plastic that I never asked for. I know get over myself, but… I didn’t picture all this gear in my house when we decided to have children, it really wasn’t part of the Plan and so permit me a moment to shout that It’s Not Fair. And then, Pollyanna style, I can move on.
There is however a further thought that lurks in my mind. As Small is not verbal the relationship we have with him is, naturally, a very physical one. We can’t debate the finer points of Octonauts, or decide whether we prefer red cars to blue or even whether green foods are good for us, but we can tickle him to make him laugh, play music that makes him stop and smile and rough and tumble him all over the floor. He loves physical interaction – he reaches out for proper big hugs, he wants to be picked up… dear God… he loves being picked up. We pick him up to carry him from place to place, we pick him up to show him a different view, dance with him around the kitchen, we pick him up to comfort him when he’s sad. What happens when I really, truly cannot do that any more? Every parent wants to pick up their child, sit them on their lap, it’s the most natural thing in the world… and it will be hard to lose that. Equally, how do we replace it?
So, hooray that this equipment will be coming to practically ‘manage’ my son, my four year old child, but I’m hoping that before that arrives we can find some creative solutions to the emotional challenges to come – how to continue that physical bond with my little boy…