People who live with these conditions are shielded away from public view, they're the freaks that show up in horror films like Deliverance and Texas Chainsaw Massacre. The day I walked into a ward where 18 children with cerebral palsy moaned loudly, waved their arms around, screamed, cried and salivated on themselves I couldn't help but think of zombies. This is why it's difficult to write this...
The only preparation I was given before walking into that ward was "not to feel sorry for the children, pity will not benefit them, make friends and be fun". After I spoon fed porridge to a few children in wheelchairs, after I wheeled them to their bed sides, after I walked through a ward with babies born with cerebral palsy, after I saw a little girl screaming and pounding her head into the floor, after I tried to make friends with a child who wanted to hold my hand just because I told him I was 25, after I sat in a room with two children, one of them watching a Football game on the TV and the other looking out the window and both of them competing to see what was more exciting - the window (that looked out onto swings in the middle of a green grass field) or the football game... after all that I walked outside to the car park and cried uncontrollably, the kind of cry where you squeal and dribble and look really pathetic. I then wiped my tears looked at my hands, looked down at my feet and then looked at my face in the reflection of a window before walking back to the ward.
"They're ok" I'd say to myself "they don't know any better" then I began to wonder what it is these children see, in what colour, in what intensity, they must have a very different internal life to those of us that are functioning "normally".
There was a girl there who was 19 years old, she was wheelchair bound, her neck twisted to the side so her chin rested on her shoulder, her mouth hung open but she only seemed capable of two emotions - ecstatic joy - where her mouth opened up a smile that was so wide her cheeks balled up as she giggled whooped and hollered - but in an instant her face would distort, the smile gone but the cheeks, still balled up but with sudden sadness and distress as she wailed and dribbled. You are given no time to anticipate either emotion, it just seems to slide back and forth inside her.
I did not feel sorry for her, I've heard it said that joy is sorrow turned upside down, so the further you fall into either state the more you're able to experience within them. I agree with this little beautiful and tragic sentiment.
Gareth is 25 years old, we're the same age, he was put in the Nursing Home when he was 10. Every day Gareth wants to tell you what day it is, "It's Tuesday!"and you'd have to say "That's right Gareth" then he'd say "Tomorrow is Wednesday" and you'd say "Yeah, Gareth it is". Gareth always had something to look forward to and he only needed a few things a week. He'd say "I'm going to get candles on Thursday!" or "I'm going to dress up on Saturday!". Gareth is the only patient who acknowledges you in a way you don't need to prepare for. He takes pride in the few things he can do for himself - like eat and wheel himself to his own bedside.
One of the nurses told me why Gareth talks about the days -
one day I told Gareth, I don't want to hear any more sad stories in this ward, please no more sad stories, then Gareth asked what day it was and I smiled and said "it's Monday Gareth"and he said "Yes! and tomorrow is Tuesday" and I just hugged him and he never shut up about the days since.
I met many of the parents of these children and I praise and admire them but its hard not to find yourself asking the question "If I knew my child would end up this way, having to be nursed 24/7 in a home would I keep the child?
This is not an exaggeration but every parent I came across kept their child believing it was a message/lesson God was giving them. They felt blessed to have children who only need one thing to survive and that's the love and care of their family. This was the same response I got from the parents of children with Autism and Epilepsy in America.
There were however cases where the parents of some children deserted them in the home, ashamed and unable to cope.
Obviously most parents don't know they're carrying a disabled child until the birth but some parents are told by doctors of the high chances and some can be diagnosed in the womb. Again, I know my mum was told there was a moderate possibility I'd be born with down syndrome but she still had me.
Some of the parents felt you shouldn't be allowed to have sex if you can't take responsibility for whatever you produce.
I spent a week with two physiotherapists who's job it was to massage the children who spend all their time on their wheelchair without proper exercise or physical stimulation. Watching them go from ward to ward having to strap down some of the children to stretch out their limbs as they scream and fight, DON'T TOUCH DON'T TOUCH!" for some of the children this is the only situation they show any animation about their lives "
That was it for me, that was the moment I said to myself "no I wouldn't keep my child if it was to end up this way". I remember my own mother kicking me out the house when I was 16 and saying "I was not born to have you!" I hated her for a long time after that but she's right, she has her own life, she was not born to have me, no one is born to have children. I believe we are here for one conscious life only. I already feel myself to be a good, tolerant, empathetic and caring person so bringing up a profoundly disabled child won't be seen by me as a lesson or a gift from God.
On the other hand, the most beautiful thing I've ever seen is a mother, tired from work, run into the ward, straight over to her son, lift him out of his wheelchair, hold him tightly in her arms and whisper in his ears "I will always love you... no matter what".