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.
