A Different Kind of Dad
The issues with parenting with MS as a Dad are mostly the same as the issues with parenting with MS as a woman – and these are pretty much the same as the issues for anyone starting a family! People who tell you that it’s an easy option are either insane, don’t have kids of their own or have so many children that they’re in a permanent state of sleep-deprived delusion.
Relying on a strong support system
Case in point: as I write this, my daughter is almost 7 years-old. I have absolutely no memory of the sleepless nights we would have had when she was born or feeling any more exhausted than I do normally. At the time, I was working full-time so my wife took care of our child. But I was lucky enough to work close enough to home to be able to get home to relieve her at the end of the day – we’re also lucky that we have a strong network of family and friends around us.
In previous articles I’ve written on here, I’ve talked a lot about suffering from a particularly male pride – being unwilling to ask for assistance when I should just get over myself and get on with it.
Making peace with being a different kind of dad
A big part of how this relates to being a parent with MS has meant making peace with being a different sort of father than the stereotypical successful Dad.
I’ll never be the guy who wins the parents’ race at sports days. I can’t pretend that it doesn’t break my heart a little bit every time we go to the park and I see other Dads running around with their kid, or casually walking with their child on their shoulders. I have been lucky enough to have done this sort of thing when she was very young but as my mobility has deteriorated I know I won’t be able to do this in the future.
Focusing on my relationship with my daughter
Whenever I start to feel sorry for myself and say these thoughts out loud, the people around me invariably point out my brilliant relationship with my daughter. I’m lucky that I spend so much time with her, building stuff out of LEGO, watching films, reading, listening to music, building forts, having tickle fights and laughing as much as possible. I help her do her homework and we go swimming regularly (with the help of my parents). She recently got a guitar so I’m trying to teach her how to play, although she’s 6-going-on-7 so her attention span is minimal.
The only reason we can do this is by accepting that my wife and I can’t do everything on our own. So we negotiate the different things that we can both do. My wife does a lot of the heavy lifting, but we’re trying to divide things up between the two of us so that we both avoid burning out.
Raising a sensitive and caring child
We’ve always been open with our daughter about the fact her Dad is disabled. Although I need to be careful about doing too much and can sometimes lose my balance, she’s keen to help with my exercises (although her stretches can be a little eccentric). The last physiotherapist I saw told me that playing catch with her in the garden would be a huge benefit for my balance – forcing me to alter my centre of gravity to accommodate the shifts in both of our throwing styles.
She will bring me my walking sticks, offering her hand if she can see that I’m a little wobblier than normal. Our hope is that she continues to grow up to be a sensitive and caring human being.
Shot of perspective
Something I’ve always said about parenthood was that it has reminded me that I am not the centre of the universe and that shot of perspective can jolt me out of my darkest moods. She’s not at all fussed about her Dad being disabled and often says that he’s the best Daddy in the world.
As Dads with MS, we need to concentrate on the things that matter which we can do, rather than stressing about the stereotypical perfect-Dad moments which are out of our reach. If the only thing we give our kids is time then that’s really all that matters at the end of the day, much more than winning this race or climbing that tree.
Does your employer provide workplace accommodations due to your MS?