A Child's Perspective of having a disabled parent...

Growing up with a disabled parent...

'It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change.'

 Charles Darwin

When I was growing up I didn't think there was anything different about how I was raised. My dad was in a wheelchair, he had nurses to care for him, and they would take us to school. (My old carers were some of the same few- unbelievable but true). He never was able to play football with us in the garden, or even get into the garden really without great difficulty.

He spent most of his time in bed, or on the couch or at his computer, tinkering with whatever project he had going at the time. This is how I remember him in my childhood, or at least the good bits. Things went slightly downhill between us all when my parents got divorced – he became pretty much non existent- but I still knew my dad wasn't what other kids had. Or rather I started to realise as I grew up. But that didn't mean anything less, he was still my dad in whatever crooked form he was in. And I loved him regardless of his disabilities.

The point I’m trying to make with this blog is to try and take some of the guilt away from those in the M.E. community, those who have disabilities and have children, and feel the constant pounding of guilt that they can't do and raise their children the way they had intended or envisioned.

I grew up with a dad who was disabled, but it was his own fault. He didn't take care of himself, he had diabetes and messed up enough that he is now near unable to function daily. He told me himself just a few weeks a go that he doesn't think he'll see too many more years now.

But I grew up with this. I can tell you that my mother said she never envisioned bringing us up how she did, after all she was married when she had us. But when you have a parent that isn't like the other parents, can't meet you at the school gates or needs you to be quieter when they are doing something, or they are feeling ill. You, me, as a child, adapt. You think nothing of it. From a child's perspective I never felt like I missed out on anything, because he had a disability.

I am now in the position where I am myself disabled and if I had a child I know how freaking hard it would be and I have some sympathy, that even if he didn't take full responsibility for us, that my main parent was my mother, it must have been HARD.

As a parent you have to adapt, you can't hold onto the expectations you had, the promises you made to yourself when your child was brought into this world, because life doesn't work like that. You have to adapt to the here and now and work your way through it as time goes on, constantly adapting for yourself and your child.

From a child's perspective, I never lost out. Yes I looked at other dads with envy every once and a while but as a child I knew who my dad was. Where he was. And as a child I thought of nothing less. He was how he was, and I knew no different.

So what I’m trying to say; Give Yourselves A Break!! Your children love you know matter what. Yes they might worry about you as they get older and become more aware of your limitations, and yes they might occasionally envy others. But YOU are their parent. You brought them into this world. And you are their constant. No matter what disability you have, that you were there in the first place will mean so much more in the long run than if you bury yourself in guilt so much that you start to pull away from them.

My story is slightly different, I have never had a great relationship with my father since my parents have divorced. Not because of my mother and her raising me, but because I began to see what the type of person he was for himself -his disabilities were negligible. I didn't like what I saw, and I distanced myself, and we have a fits and starts relationship now. I'll check in every few months, or just recently every few weeks. But that has nothing against his disability. That is him and the bad choices he's made.

But he's still my dad, and disabled or not, he always will be and I never missed out on anything because of his disability. I missed out because he could be at times, a difficult person.

So to those parents who feel they have in some way failed their children by being ill, by having M.E., by having Fibromyagia, by being disabled in some way. Don’t be so flipping silly. You are doing the best that you can do, and when you're kids grow up and have some of their own, or even before that and it hits them that you did everything that you have done for them whilst being so ill they will love you all the more. Because they will know the added pressure that you had to deal with and that you didn't give up or give in.