The other day my 6 year old caught me off guard when he asked me, “Mummy, did you choose to have MS?” This was perhaps the first time that any of my children had expressed any concern about my MS – a moment I have been dreading since I made the decision to have children. And, believe me, the decision to have children was a big one. Despite claims that MS is not hereditary, it is widely acknowledged that genetics can play a part in developing it. According to MS Trust stats, 1 in 330 of the general population will ‘get’ MS. As a child of someone with MS the chances of having MS increase to around 1 in 48, which is still much lower than the general population’s risk of developing other diseases such as Cancer (1 in 3), Dementia(1 in 20) or Heart Disease (1 in 22). For the record, my paternal aunt also has MS. But, I couldn’t let such stats get in the way of having children, indeed more pressing for me at the time was the concern that I wouldn’t be physically capable of bringing up children and that they would suffer because of it.
I never want my MS to seem like a big deal to my kids. Right from the start they have seen me use wheelchairs and sticks when out and about; they’ve witnessed me collapsing into chairs, walls, floors and whatever or whoever else I can get my hands on during unbalanced moments of wibbly wobbliness. Like any parent, I never want my children to be scared of my condition, so I try to treat it as a normal part of our lives and of who I am. However, when my child suddenly asks such a question as “Did you choose to have MS?” there are clearly concerns that need addressing.
I replied, “no” – of course I didn’t choose to have MS, but I could see his mind working away and the next question popped quickly out of his mouth, “Do you want to have MS?” Again, I answered, “no”, to which he nodded a rather serious nod and continued, “Because if you didn’t that would mean you could run and stuff and win races like the 3-legged race where you need to run and not lose your balance, wouldn’t you?” Up until that moment I’d never considered the 3-legged race to be one of my losses – but just then it seemed like the biggest loss of all.
A few days later my son hit me with, “Mummy, will I get MS?” Ouch. This was obviously playing on his mind and all I could do was reassure him as best as I could that he wouldn’t necessarily have MS, and that it wasn’t something he needed to worry about. That didn’t stop him from asking a few days later, “How do you get MS?” I figured I couldn’t ignore his concerns any longer, I needed to find out what he was worried about and so we sat down to have a chat.
Here is our (brief) conversation:
Me: What do you think MS is?
Son: I think it’s something that … you need a walking stick and a wheelchair.
Me: What do you think it does?
Son: I think it does… make you have bad legs.
Me: What do you think it looks like?
Son: I don’t know what it looks like.
Me: Do you think it looks like a big ugly monster?
Son: [nods] Yeah, [in a monsterish voice] a big ugly monster!
Me: Is there anything you wish I could do that I can’t do?
Son: I wish you could run. I wish you could play football with me and I also wish you could, um, let me think – play with my dinosaurs with me when I get home from school… Why do you have MS?
Me: I don’t know, I didn’t choose to have it.
Son: Mummy, how did you get it? Did you just get greedy?
Me: No, I was very healthy.
Son: And you got MS? Were you too healthy, Mummy? Do you get MS by eating healthy food?
Me: [oh dear!] No, it’s important to be healthy… Do you have any worries about my MS?
Son: No. Can I go now?
I think I still have a way to go – my kids are still too young to fully grasp what having MS means and I don’t want to turn it into a bigger deal than it needs to be at this stage! However, it does remain a bit of an uphill struggle, as my 4 year old reminded me yesterday when she said, “Mummy, when I’m a grown-up mummy like you I want to have a stick like yours”…