For so long my greatest fear was that I might lose my son, but now it is that he might lose me.
His health has improved so much and I am truly grateful for that because for so many years the fear of losing him was an unbearable pain. My pain.
But losing me would cause him a pain beyond his ability to express. His whole world would be turned upside down. His pain takes on a whole new depth in my heart.
Who would take care of him? Who would devote their life and their own health to making his world great again?
For caring really does take an emotional and physical toll, albeit one which we don’t question when it is our loved one. We just love.
My physical body aches all the time. Some days it is a struggle to get up, let alone to be enabling another person to do all the things they want to do. The pain is constant and draining, but I try not to let my son know. Because I love him.
People have told me that they couldn’t do what I do, but I know that they would if it was their child. Love really does change everything.
But who else would love my child like I do?
To be honest, even looking 10 years ahead is scary.
Ten years from now he will be almost 21. I will be 52 and my husband will be 62.
What if our son still can’t stand? Or walk? Or cook for himself?
Will I still be able to look after him? Will I still be able to hoist him? Won’t he be a lot bigger than me? Will he want to live at home? Will he have a choice?
His big brother will go to university before long and it will be a wonderful opportunity for him. He will be ready because he has slept away from home a lot, gradually building from odd nights with Grandma to a couple of nights away at a time with friends. He knows that his room will be here waiting for him and that I will be wanting (expecting) him to come home every holiday. He knows that the family home will be his base till he no longer wants it to be.
But I am slowly realising that it might not be the case for my younger son.
And that is beyond difficult to think about. For this child doesn’t have sleepovers at Grandma’s house, or with a trusted auntie. He can’t even get in most friends’ homes to visit for a few hours, let alone sleep away from home. He isn’t building his confidence at time away from home like most children his age and those opportunities are not going to magically appear as he gets older.
People often have no idea of just how limiting life can be when you have significant physical disabilities. Visiting family or friends is often just not possible.
“Professionals” who are supposed to support families like mine just make me feel guilty for wanting support in the here and now. They talk about their “person centred” approach but they have no interest in providing what we actually need in order to keep going physically or emotionally, let alone in helping to slowly build a path to adulthood, just like able bodied children do.
I know that I am not ready to make decisions about the future.
But the future will happen, whether I am prepared or not.
He doubts his place in the world and sometimes he is afraid to go out because facilities disable him more than he can cope with.
In a world where children are afraid to go out and parents are afraid of the future, there is a lot to do.