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I Am Not Exceptional for Parenting a Child With a Disability

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A few years back, I decided to open up a bit more about my life as a mom of a child with a disability and the role spinal muscular atrophy (SMA) played in our family’s life. I thought by sharing a bit more, I could show people that “if I can do this, anyone can.” I wanted to help people see they could joyfully parent any child they’d been blessed with.

Unfortunately, I think most people take away that my husband and I are saints or exceptional people doing the impossible, instead of seeing we’re ordinary parents who’ve adapted to our circumstances.

Someone recently said in front of me, regarding a pregnant friend, “So long as the baby is healthy.” And I thought, have you learned nothing from my family’s example? I should’ve blurted out, “And even if the baby isn’t ‘healthy,’ it’s not the end of the world.” But I didn’t. In the same conversation, when referring to an elderly friend this person said, “She requires people to do everything for her. What kind of life is that?” And I thought, that’s the joy filled life my boys live every day. But for some reason, despite knowing my family intimately, this person still held onto the belief that relying on others to care for you is a lousy way to live. This same person always tells me they don’t know how I do everything I do, as if in admiration, but thus far, all my example seems to have taught her I’m exceptional, unaware that disabled children and their families are as happy as any other. The realization of how people see my family makes me sad.

I strongly believe in teaching by example. I try to avoid confrontation and arguments; hoping instead my example as a loving parent speaks for itself, but I see now that people aren’t getting the message. The message isn’t that I’m a saint, the message is that parenthood can be great, even when it’s sometimes scary, heartbreaking, uncomfortable and looks completely different from what I pictured. It means realizing that we, as parents and individuals, can do hard things. You could raise a child with a disability just as well as me. You could live a happy life if tomorrow if you wound up relying on a wheelchair or needed a round the clock caregiver.

The life I’m living, and that of my children, isn’t exceptional because I’m somehow happily raising two disabled kids. It’s exceptional, or rare, simply because SMA only affects approximately one in 6,000 children. Raising a child with a disability requires the same skills as raising non-disabled children: patience, hard work, sacrifice and love.

If you say you couldn’t do what I do, then I have to question if you can properly raise any child, pet or possibly houseplant. I love my sons with SMA no more or no less than my other children, and while I parent them differently, I am the same parent to them and their non-disabled siblings. I do special loving things for all my kids, and those gestures are no greater when I do them for my disabled children.

If your child was disabled, you would take the same creative measures, and not because you wanted a pat on the back, but because it’s what you do for your child.  Stop praising my mothering because I don’t make parenting a child with a disability look awful. When you say, “You’re so amazing! I couldn’t do what you do!” I hear you putting me on a pedestal, rather than getting the message that you too can do hard things. You can realize you’re not in control of a situation and still thrive. Even if life is sometimes hard and messy, it will be OK, and more often than not, better than OK.

I’m proof that we can’t conceive of all the ways we can be happy. There are millions of disabled people in this world who are proof that happiness doesn’t look how you think it should.

That is why I write about SMA. Because if I can do this, anyone can.

A version of this story originally appeared on This Ain’t the Lyceum.

Originally published: July 2, 2018
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