Parenting a Child with Additional Needs

When Emma asked if I’d like to contribute to her Just One Thing series … I will admit I thought she may have got it wrong in asking someone like me.

I asked her if she really wanted my, for my story is one that prospective parents  may not want to hear. The events that followed the birth of my first born certainly didn’t go the way I’d planned and for some, this may be uncomfortable reading.

Davina McCall, when speaking on Giovanna Fletcher’s podcast this week, said that if you’re a mother and you’ve had a bad birth experience, you shouldn’t share your experience. New parents don’t need to hear that shit surely? Was she right? Actually Davina, I so so agree with you there. I am under no illusions that if I’d have heard my story, prior to giving birth the first time, It would have put the fear of god in me too.

But by the same token, I think it’s an important story to tell. It’s important to be aware. So if you’re feeling brave, please do read on… I promise there’s a happy ending. \

I had been 33 when I fell pregnant with my first baby. I’d sailed through pregnancy with no complications. I’d had the various scans and screening and nothing had been flagged up as being untoward. In fact, I was blissfully unaware, engulfed in my bubble of naivety, that stuff like “having a baby with additional needs” didn’t happen to people like me. I’m not altogether sure who I actually thought it happened to… Perhaps back then, I just didn’t think. It just wasn’t on my agenda.

So when Oscar, that’s our son, was born by emergency caesarean (due to his heart rate dropping after being induced and then needing to get him the heck out of there double quick) and I awoke from the general anaesthetic to the news that they were sorry to tell me, but that they suspected Oscar had Down Syndrome…I felt my world in that moment, fall apart.

No one expects news like that, you see. It genuinely felt like an out of body experience, like I was watching a scene from a movie or something. I had a low chance of having a baby with Down Syndrome according to my screening, so how could this have happened to me? I sobbed. More tears than I have ever cried before. Because for me, back then, I hadn’t wanted a baby like him. And I was scared. So desperately scared of what having a child with Down Syndrome meant.

I’ve talked about these feelings before in my writing. Someone once called me out on the use of “me”. They said that I’d talked too much about the impact Oscar’s arrival would have on “me”. How it would affect “my” life and how in short, I sounded like an arse. But in the beginning, I make no secret of the fact, that it really was all about me and how I’d felt. I wasn’t thinking about anyone else, other than Chris and I. I don’t think I was even thinking too much about Oscar.

Would this mean a lifetime of having to care for him? Would he be able to do the things everyone else could? Would I ever love him? But more than anything, would this pain ever go away?

But the love came quite quickly for me. I don’t personally believe in that rush of love people bang on about when you give birth to a baby, but I do fiercely believe in protectionism and somewhere, amongst the grief and anger and the all consuming heartache, I knew I wanted to protect my baby. The love then followed and today, five and a half years later, I wouldn’t be without my Oscar.

I’m not quite sure when the sadness went but it’s long gone now. There wasn’t one defining moment I don’t think, more that with each day I woke up, I wasn’t feeling quite so sad as I had done the day before.

Don’t get me wrong having a child like Oscar is a challenge. But I’ve gone on to have two more children, Oscar’s little brother and sister, Alfie (4) and Flo (2) – both of them without any additional needs. They come with their challenges too. In so many ways Oscar is my easiest. His understanding far exceeds his ability to speak so he never answers me back!

I had been scared. Scared that I wouldn’t be able to cope with a child like Oscar. Scared of the impact having him might have on the rest of the family. But the truth? Oscar has brought more joy to us than we could ever have imagined. I had a preconceived idea about Down Syndrome and how people lived with it. And all I’d seen back then was sadness. I was so so wrong.

So if I had just one thing to say to a new parent struggling to accept a diagnosis their baby or child has just got or to a prospective parent, currently pregnant or thinking about having a baby soon… it’s that “sometimes the things you’re most scared of turn out to be the things that make you the most happy”. It took me a little while but I got there. If I could go back to the 33 year old me, who’d just given birth for the first time, I’d tell me everything was going to be ok. Because life really does have a funny way of always working out in the end.