When you become the parent of a child with “extras” going on you get told a lot of things which you don’t always want to hear.
I don’t buy in to the whole “special parents” thing. I am not a “special” parent. I am just a parent who loves her child. There is nothing “special” about that. Parents are usually quite fond of their children.
I do not believe that I was “chosen” because I have more patience or strength than anyone else. If that really was the case how come I didn’t get chosen to have a healthy back so that I could still do everything this boy needs?
I don’t believe that I am exceptional and I don’t believe that you couldn’t do it. If someone had asked me eleven years ago, I would have probably said I couldn’t do it . Yet, really, all I do is love my son. You would do the same for yours if something happened to them.
I struggle, I cry, and some days I am not as patient as I should be. It is hard to be patient when it is the 300th time today that someone asks you where you are going, particularly when you are clearly carrying the laundry basket to the washing line.
Some days I rant (inside my head, not out loud – I am terribly British!).
Some days I lock myself in the bathroom just to get away from reality – it is the only room in the house with a lock on the door. (I should add that I only do it when my husband is there to take over, I don’t disappear during the day!)
Some days I struggle to get out of bed, but staying there is not an option. I have a person who relies on me to enable him to get up, have a wee, eat breakfast and do the multitude of things he needs each day.
Some days I hurt so much that I don’t want to hoist him to the floor to play or do therapy but I know he needs time on the floor to build up his tummy muscles. I also know I will have to get him back up. I don’t really feel up to that either, but I will do it.
Some days I feel like my chest is going to burst with the built up fear and emotion of living through each day and worrying for the future.
Some days I will cry with pain, some days with frustration and some days with sadness.
Some days I wish it could be easier.
But each day I pull myself together and get on with whatever he needs me to do.
Not because I am strong, not because I am superwoman and not because I have any special skills but, quite simply, because I am his mum and it is what he needs.
If it was your child you would do it too.
The last few months I have thrown myself into campaigning to get properly accessible toilet facilities in Cornwall so that we can go out more. He often doesn’t want to go out because he is worried he will need the toilet. Unless there is a toilet with a hoist and a bench he cannot “go” there so he will choose not to.
Sometimes I make him go anyway because we have to go out and I worry that if I don’t he will end up afraid to go anywhere.
I don’t want to be constantly asking people to think about accessibility.
I don’t want to be constantly pleading for people to understand.
I don’t want to be up most of the night writing e-mails to local businesses.
I don’t want to be in the papers, on the radio or on the television.
I don’t want to be constantly asking for help.
I don’t want to be constantly asking everyone I know to share what I write.
I don’t want to be constantly asking people to sign this petition.
But I have to. Because my child needs me to.
Without these facilities he can’t live a full life.
If it was your child, you would do it to.
Just imagine for a moment that it was your child…
I know that I am a complete bore who bangs on incessantly about the need for accessible toilets. I want to stop banging on about it, I really do.
But I can’t.
Because it is my child.