This is a topic that I think very few people really talk about, but the more we veer into adulthood the more we think about potentially wanting our own family. Children of our very own. A scary prospect isn’t it? And even scarier when your sibling already has a disability that could potentially mean your own children could too have the same condition.
I am very lucky in that I am not a carrier of the faulty gene that creates DMD. I was tested at 16, but this doesn’t mean that this still isn’t at the back of my mind a lot of the time. Before I go into this topic properly I feel that I should probably explain a little more about my own circumstance so you can better understand where I’m coming from. So here goes…
As we know my youngest brother has DMD, but my mum isn’t a carrier of the faulty gene that creates DMD. As a lot of you may already know, this condition is passed from mother to son… but in our case Joe was a genetic fluke. Meaning, that my mum and dad were no more likely to have a child with DMD as the next person. A one in a million chance, and they were that one.
If as a female you are a carrier of that faulty gene, then you have a 50/50 chance of having a son with DMD. So when I was old enough both myself and my sister were offered testing to see if we were a carrier of the faulty gene. I am not a carrier, which should be a relief right? But it doesn’t feel like it, because then there is the sobering thought that I could too be that one in a million chance.
I have found that no-one talks about this, and it’s something I have really struggled with over the last year. So as usual I thought to myself, surely if this is something I think about, then there must be other siblings in the same situation that could do with feeling a bit less alone, because I know that it’s not something that is easy to talk about.
I am 28 years old, and before I met my husband a family of my own was just not something that was on my radar. Just wasn’t fussed. But then I met my husband and we are now married. When I met Adam things changed a lot and now I am in a position that I would actually quite like to have a family of my own. We are not there yet, but when you start to think about it all those ‘what if’s’ start. The thing that really sticks in my mind, is that being so close to my brother and seeing what we goes through daily… I know that I couldn’t do that as a parent too. I know what it feels like, and how hard it is as a sibling to watch how things unfold and the stresses it creates… so I really can’t imagine how difficult it really must be for my mum and dad to go through it when while Joe is my brother, he is their flesh and blood. Their baby.
Some people might read this and think that I am just being negative, I’m not a carrier right.. so what’s the problem? The one thing that I find difficult get across to other people is that while I am lucky that I am not a carrier, when you grow up with something like DMD in your life, and in the one in a million situation too your first thought is how will we deal with the worst case scenario and it all doesn’t turn out fine… because you have lived through the worst case scenario as seen it all first hand. So for me, I have felt that I need to find my peace and accept that what will be will be. Much easier said than done I can assure you that!
I hope that this may have helped someone…anyone… mostly because it took me a lot of balls to write this to be honest!! But seriously, I hope that some of you can relate and maybe feel that you can speak about it a little easier now when it is something that other people also go through.
All of the above being said… I attached the image above to this post because to me when I think about having a family of my own, I think about all of the memories we made as kids and continue to make as adults. This is a really old picture from a holiday we had at Seahouses. We had such a good time on the beach and just having a laugh, but that’s all anyone really wants for their family isn’t it, for them to be happy and healthy. While we might not always have the health part on our side… we certainly make the most of what we have every day!!