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Family

The unexpected joy of having a son with disabilities

Sheryl McIlroy was devastated when she gave birth to a son with profound disabilities in 1993 but 22 years later, she struggles to find words to describe the joy he has brought to their family.

Steve, Sheryl, Cam, Steph and Alissandra McIlroy.
I'll never forget the sight of Cam when he was born. He was blue and had his umbilical cord wrapped around his neck. It was absolutely terrifying but he survived.
Shortly after his birth he suffered a stroke and when he was six weeks old he started having seizures. It quickly became clear our gorgeous little baby — our third, and the only boy — would be profoundly disabled.
I can very much remember that very dark, helpless, hopeless time when we found out he wasn't going to be "normal" like his big sisters Alissandra, now 27, and Steph, now 23.
I spent a lot of years thinking that something would happen to make everything okay again. It probably took 10 years before it hit me: This is Cam and he's gorgeous. I don't need to try to fix him because he's perfect just like he is.
Eventually, you realise the pure joy of that special relationship you can only have with a disabled child. It's very different, it's very draining and you have them at home forever, but the overwhelming love you feel carries you through all the tough times.
Despite all his daily aches and pains, he is the first person to smile and try to make everyone else happy.
In just 19 years, Cam has brought so much joy into our lives. I don't think any of us would be the people that we are today without him.
There are heartbreaking times. You can be perfectly happy and then it will just hit you out of the blue: your child is never getting married, he'll never get his driver's licence, move out of home. That can be very upsetting for a while.
Another thing that plagues all parents of disabled children it the worry about what will happen once you're gone.
This is something we had to confront in 2011 when I was diagnosed with breast cancer.
Cam and I had never spent a day apart but we were abruptly separated — I needed a double mastectomy and chemotherapy.
After the surgery and treatment I was too weak to deal with the physical aspects of caring for Cam. I couldn't push his wheelchair or dress him. For the first time, he had to rely on other people.
My illness was very upsetting for him, but at least one good thing came from it: Cam had to get used to someone else looking after him and now I'm not so worried what will happen to him after I'm gone.
My treatment is complete now and although I'm still not feeling entirely like myself again.
Sometimes I've felt a bit sorry for myself, particularly after my surgery and chemo. It's very confronting having no breasts and no hair.
But after I while I just went back to being grateful for all the wonderful things my life has been blessed with.
I really, really love my family and I just want to spend as much time with them as possible. I love my life and however long I've got left to live it, I want to spend every second of it with them.

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