“I’m not going to grow up. I want to stay small.”
My ten year old son was adamant that he would not grow up. He had a deep sadness in his eyes, but was unable to explain his worries. Yet he kept tearfully saying he wanted to be small and asking me to tell him that he could say small. Nothing reassured him.
A few days ago it became clearer, “I like living here.” followed by “This is where I live, I don’t want to live anywhere else.”
He is worrying about the future – his future.
I reassured him that he doesn’t have to leave home when he is older.
I told him that he will always be my little boy, just like his big brother is. (6ft and still growing!)
I told him that I will always love him.
I told him that I will always look after him.
We had a big cuddle and he seemed happier.
Yet my heart sank.
Did I just lie to my son?
Not intentionally. Surely all parents have these moments? Children worry.
But their children are not Adam.
I will always love him, but what if I just can’t look after him in the future?
He is likely to always need someone to get him out of bed, get him dressed and into his wheelchair. He will need someone else to make his meals and help him to eat. He will probably always need someone to hoist him to the toilet. He will always need someone else to take him out and help care for him. He also has learning disabilities which makes it likely that he will be an emotionally vulnerable adult.
What if I can’t keep my promise?
I was 31 when he was born and I will always be 31 years older than him.
What will happen when he is 31 and I am 62?
One day I will not be able to do all the things he needs, let alone the things he wants.
Life certainly isn’t fair.
Since our conversation the other day I have felt deflated and lost for a way forward. Worrying about the future is robbing me of today’s joy.
For so many years my biggest fear was that I might lose him.
Now it is that he might lose me.
This is why I am spending my every waking moment (and many of my sleeping ones) trying to make our corner of the world more accessible.
Something as simple as a Changing Places toilet means that he can access a place.
Without these, he might end up housebound without me.