This morning I got the call I have waited for, for near on five years. My student with an incurable, muscle wasting disease had finally given up his courageous fight aged twelve. We'll call him Sea for the sake of giving him a name and protecting his family...
The thing with teaching children with special needs - medical, physical, mental or a combination is that you form a greater bond with them. Don't get me wrong - I formed a bond with all the children I taught, but when you are rooting for a ten year old to say "mamamamama" it's a different playing field.
It colours my parenting, I believe that Monkey can achieve anything because of those children I taught. Not because he is able-bodied, not disabled, but because they succeeded. They reached milestones so minuscule that to an outsider it wasn't even a yard-stone... but for them, their parents and me, it was huge. I believe that I and Stud1 are the only people who will champion our son. I saw many parents who were waiting for someone to save them from the diagnosis. That help never comes. You are ALL your child has.
You learn to love their idiosyncrasies. Whether it's the spitting, the hitting, the biting, the hugs, the giggles, the way they ask you to say mmmmmm so they can feel the vibrations through your skull (try it - put your hand on your head and say mmmmmmmm), the tears, the tantrums, the swearing, the head banging... It's all communication and it's all them. The same with your child, love their idiosyncrasies.
Sea loved jokes, even when his movement was limited to blinking. You could make him laugh by flying a Super Man toy over his bed and pretend farting. He loved stories, animals and meeting new people. He didn't get to do this very often as he was bedridden and his immune system was too weak to risk many trips away from home. His smile could light up the room. Sea loved his brother and sister and mum. He loved sunlight on his bed. He loved it when people hooted as they drove by his house. That is going to be a hard habit to break!
Somedays it was even possible to believe that he would get better and that the painful convulsions and twisting of his muscles were just a memory. Now they are.
I am stuck in the space between relief for him and his family, sadness, and the need to protect Monkey from anything that could hurt him...
Thank you for reading this.... I needed to get it out.
RIP T M... you are free, go find your wings.