A Message to Mighty Parents

I love reading The Mighty, but I’m quite a soppy sort, so the stories usually touch me quite deeply: I’ve lost count of the number of times I’ve read a story, happy or sad, that made me cry. One of the things most likely to make me cry is a story written by a parent. I’m not a parent, but I know what it’s like to be a young person and to be very sick.

Up until recently, I could only guess what it was like for parents, judging by the stories I read and by what I remembered of my family’s reaction to my illnesses and hospitalizations. Just before Christmas, though, I experienced a different side of this when my niece (who was less than a week old at the time) was rushed to hospital with a life-threatening infection. 

Not knowing if she would survive or not was the hardest thing I’ve ever experienced. She was so delicate and fragile in her incubator. Her life was so vulnerable, and I couldn’t bear the thought of her being so sick.

The doctors told us there were two possible diagnoses. One was the infection, the other was a genetic condition which would make daily life extremely difficult. We later found out she had the infection, and with some of the best medical care around, she fought it off.

The genetic disease would have presented more challenges, but in those early stages, we didn’t care. We’d choose any life for her, and we’d make things work for her. When we saw she was on the mend, my brother said, “It’s going to be OK. We’re glad she’s going to get better, but if she’d had the genetic illness, we would have coped. We would have made it work. We would have got used to it, and we would have carried on.”

This is the attitude I see on The Mighty again and again and again. Those of you out there who are parents to children with medical conditions: you are amazing. It’s not easy to do what you do. You carry on because you have to, because you have no choice, because you love your child more than life itself and you will do what you have to do to care for them.

It’s not easy for your child, but it’s not easy for you either. You are some of the strongest people anywhere in the world. You are some of the best people there can be. So, here are some words of encouragement for you…

Life as a disabled person can be hard; it’s harder than not being disabled. It’s harder to do all the things other people do. It’s harder to be at school or to go to work. It can be hard knowing you’re different. It’s hard to be sick, or in pain, or in hospital. It’s hard at those times when even the little things are impossible and you just wish things were easier. 

There’s more to it than that, though. Being disabled can be amazing. Embrace the fact that your child is different; other children can be very accommodating of difference because they find it interesting. Embrace and enjoy the fact that there are lots of opportunities out there just for disabled people: sports, social clubs and cultural activities. There are even some perks to being disabled: free parking, front-row seats at concerts, personal helpers at airports and so on. 

Being disabled gives you far more than that, though. It makes you tough. You might think your child is vulnerable or fragile, and maybe they are, in some senses. In others, though, your child will be tough as old boots. Yes, it isn’t fair that they have to deal with stuff many adults never face, but they will cope because you’ve taught them how to cope. They will excel because you excel. They will enjoy life because you show them how. They will be happy, confident, successful and fulfilled — you just have to show them how. 

If you have a disabled child, celebrate their life every single day. Try not to mourn what could have been; instead, rejoice in every wonderful moment you have together. Finally, go easy on yourself. 

Nobody can tell you it’s not hard or that it gets easier — but you can do it. There will be times when you feel you cannot do this anymore — but that feeling will pass. You know, deep down, you will do anything for your child. You guys are just amazing, and, there’s only one thing left to say… thank you.