Daddy bent-legs

Neil Matheson, from Vancouver, Canada, talks about his journey into fatherhood as a man with cerebral palsy.

Neil with wife Elana and son Jake

Mostly, just my legs are affected. They are weak and permanently bent at the knee. Though, really, most of the muscles throughout my whole body often feel tight or a little bit spastic and I use a pair of crutches to help me walk.

I have never let my disability slow me down. But I have to say, I never thought I would end up marrying a woman with a disability. Having to deal with my own disability every day is challenging enough. My lovely wheelchair-using wife never imagined herself hooking up with a guy like me either, for the very same reason. Oh, the irony.

Elana has a condition called arthrogryposis, and was born with bones and cartilage that never properly developed. Elana's arms and legs are stiff, and her joints almost completely fused. As a result, she uses a motorised wheelchair. Her whole life, Elana has had to depend on the hands of others – the hands of her care-aids, hired help 24-7 –   to get out of bed, go to the bathroom and get dressed.

I'm sure there are more than a handful of scholars out there weighing the practicalities of two disabled people entering into marriage and choosing to have a baby together. For some, our decision to have a baby must seem like pure insanity.

Attracting attention

But we did it, and I'm glad. Best decision ever. The dream of marriage, kids, and mortgage payments is for disabled people too. That said, my wife and I find ourselves amongst an elite few, where both parents are disabled. A true pairing of disabled parents. To our knowledge, we are the only such couple in all of western Canada. When out and about as a family, we definitely attract the attention, and curiosity, of others. To see a disabled man and disabled woman together with a baby/toddler catches a lot of the non-disabled folk off-guard. People are genuinely surprised, and will sometimes ask Elana and me questions like: “Is that your child...?” And when one of Elana’s care-aids is with us, most just assume that Jake is their son, not ours. It’s too much of a leap to think that disabled couples are actually capable of having real sex, I guess. Weird.

So, yes, Jake is my own flesh and blood, a genetic cocktail mixed by God. A gift. I remember seeing my son, holding Jake in my arms for the very first time. What an amazing moment that was. I was in awe and in just a few short seconds, I felt like a totally different man. My brain experienced a massive chemical shift in a mere instant, and I was forever changed.

I was a father. Wow.

It was like I had died; the old me, gone. My son was born, and I was born again as something better. A daddy baptism – that’s truly how it felt. Any guys out there who aren't daddies yet won't understand me. But as soon as you become a father, you get it.

Still, I think most men end up coming into parenthood at a distinct disadvantage when compared to women. Mothers have a definite jump on the whole ‘parent-child bond’ thing. Carrying around a big tummy for nine months is part of it. So is the breastfeeding. The first year, I remember, all Jake did was sleep and eat, and the bulk of both, he did while attached to, or laying with Mommy.

Fitting in

I didn't exactly know where I fit at first. Some of that can be attributed to always having another pair of helping hands to work around, and by that I mean, figuring out how to best fit with Elana and all of her 24/7 care-aids. Of course, I was already used to having care-aids around, yes. I have been married to Elana for eight years, so I should be used to all of that by now, right?

Adding a baby into the mix is a big change. Once Jake arrived onto the scene, it was like a whole different dynamic. I had to get used to fitting in with Elana's new mommy routine and, by extension, the new routines of her care-aids as well. I had to get more in tune with my own physical disability too – figure out how much I could take on and how hard I could push myself, before my body would push back.

Jake is three years old now. My son is growing up into an active, playful, and talkative little boy. No longer a baby, he is far easier for me to handle. I take him out for rides on my scooter, we go to the park to play soccer (I use a crutch to strike the ball), and we play Xbox together. All really important father-son bonding stuff.

After three years as a father, I'm finally starting to really, truly, absolutely and beyond a shadow of doubt, actually feel like one. I may have officially become a father on the day Jake was born but looking back it's obvious that, like my son, I’ve grown and learned a lot since then.

I am a disabled parent, a rare and special breed. But honestly, I feel like any regular guy, having stumbled through the first three years of fatherhood on my way to becoming a real dad.

Elana is fond of saying that we, as Jake's parents, are opportunity-makers. Jake doesn't care that his mommy and daddy are disabled; he just needs us to be his parents, to be present, to be involved in everything. At the end of the day, it’s the simple things that matter most. And that, for me, is how it should be for any parent, disabled or not.

***

Details of Neil Matheson’s self-published memoir Daddy Bent-Legs can be found at www.daddybentlegs.com.

First published DPPI Journal, Issue 75: Spring 2012

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