So… Parenting with DMD you ask? It’s an unusual parenting experience I suppose. It’s probably not as bad as you might expect, although there are some obvious differences. There are many tasks I can’t do, this means more falls on the other person. That’s the biggest drawback and I wish I could do more, as it can be much more wearing for one parent. If you’ve already found someone who likes you for you and understands what you can or can’t do, then you’ve solved half the problem. Physically I can’t do the things of a “normal” parent, but mentally I can. I can still be a dad and in some senses I’m a normal parent, well for me anyway and my child. To her it is normal and will continue to be.
I can’t give her a bottle regularly, but I have done with help. The same goes for feeding her with a spoon, I wanted to say I’d done it once. If she’s upset I can’t pick her up and that makes me feel bad. I can’t change a nappy, which I’m not too distraught about. I can’t put her in the bath and joking aside these are all things you want to be able to do for them. I could spend all of my time dwelling on it, yet it wouldn’t get me anywhere. I have learnt to enjoy stuff that I can do. I saw her and held her when she first came into the world. I get to be with her everyday. I can talk to her, pull funny faces and make her laugh. I tell her off when she’s up to something she shouldn’t be and I make a fuss when she learns something new. We have a cuddle every morning and I love the same as anyone. I look at others around me who have children and see us as no worse off for my lack of physicality.
Having kids wasn’t always on the agenda for me. The reason for this was that it was trained out of me. People with Duchenne don’t move out, they don’t have children and they don’t do a whole lot of anything really. You would believe that if that were all you were told. Most of the time it’s their negative thinking or it’s a matter of that magic word, funding. I don’t like being told can’t. So I met a girl, we moved in together and then we had a baby. All things I supposedly couldn’t do. Well, I showed them. Not that I did it to prove them wrong. I did it for me. I have been asked how I got a girlfriend, or so-and-so would love a partner. Then I say go and get one, disability or not. Since I stopped listening to useless opinions, I never saw a difference.
The idea of having a baby was daunting and it usually is. I heard from my neuromuscular doctor years before about the genetics, so I was confident on that side of things. If I had a boy, he’d be fine. A girl would be a carrier meaning she could pass it on. There was a feeling of guilt. If I ever have a girl, is that fair on my grandchild? What happens if something happens to me? And can I even realistically parent? I had to get those thoughts out of my head as quickly as possible or it wouldn’t have happened. I’d be lying if I said these thoughts never re-enter my head. Sometimes you just have to do what you want to do with your life, despite certain challenges or what others around you might think. Equally is it fair for me not to live my life the way that I’d like?
For people like me with Duchenne or similar illnesses who want to find someone, move out, have a baby or whatever it is you want to do, simply do it. For parents of DMD, let them do it and encourage them. And for anyone else, don’t listen to negative comments, ever. Sadly, I feel there is still little to no hope for a lot of people in a similar situation to me. My story seemed to rock a small part of the DMD community. I kind of get it, but there was a lot of shock and “wow you’re inspirational!” I’m thinking wow is the hope of a community that low? There needs to be a big change in the way becoming a parent is viewed if you’re not classified as “normal”. I want to inspire others to change that notion, yet I don’t particularly want to be viewed as inspirational for having a baby. Having a baby is an amazing thing anyway.