Expectant parents often declare their hope is simply for a healthy baby. For some families, however, children arrive with a prognosis for a life far from ordinary. One mother describes her exceptional family.
I’m a mother of two, a wife, and a health professional. I write this anonymously, partly to protect my children’s identity and partly to avoid having people pity me. Pity tends to arrive fairly soon after people hear about my children’s needs. I don’t need pity, but thanks anyway.
I write this with the hope of providing a voice from the other side – the side where things haven’t gone according to plan. The 'healthy' baby (“I don’t mind if it’s a boy or a girl, as long as it’s healthy”) hasn’t happened. Both of our children have pretty profound issues that have been life-threatening. One child has a significant developmental delay – he’s eight now, still in nappies, attends a special school, has seizures, and needs constant supervision to keep him safe. Our other child is six, has had open heart surgery (and will need more surgery) and is missing a kidney. My GP says we’ve been really unlucky, but I’m not so sure.
The journey so far hasn’t been nearly as bad as I thought it would be. In fact, it’s been pretty darn good. Society had conditioned me to expect that I’d have a bad life with a disabled child. But so many things have surprised me, and taught me that this attitude is so very wrong. For example, the strength of love I feel for my disabled child is exactly the same as I feel for my typically developing child. Yes, he dribbles, picks old chewing gum off the footpath to eat, has big tantrums and is getting heavier to carry, yet I’m often blind-sided by the strength of my love for him and how far I’d go to protect him. I love different things about each of my children, but I love them both with a fierce passion. And I’ve never really wanted our disabled child to be any different. Because if you took away the hard bits, he’d be a different child, and I love the one we’ve got.