I Am Not Exceptional, And So Can You
My blog, 'This Ain't the Lyceum' didn’t start out as a special needs blog. In fact, I still don’t think of it that way. But a few years back, I decided to open up more about that aspect of our family’s life. I thought by sharing a bit more on my blog, I could convince people that “if I can do this, anyone can.” I wanted to help people see they could joyfully parent any child God had given them. Unfortunately, I think most people take away that we’re saints, or exceptional people doing the impossible, not that we’re an ordinary family who’ve adapted to our circumstances.
Someone recently said in front of me, regarding a pregnant friend, “So long as the baby’s 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 Fulton and Teddy 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 them is that I’m exceptional, not that disabled children and special needs families are as happy as any other, and that makes me sad.
I strongly believe in teaching by example. I try to avoid confrontation and arguments; hoping instead that my example as a Catholic special needs parent speaks for itself, and can inspire others to see the truth, but I see now that people aren’t getting the right message. The message isn’t that I’m a saint, the message is that we are all called to be joyfully obedient to God’s will in our lives, even when it’s scary, heartbreaking, uncomfortable and looks completely different from what we pictured our life to be. It means realizing that God calls us to do hard things that will require us to sacrifice and die a little to ourselves daily.
You could raise a special needs child just as well as me. You could live a happy life if tomorrow you wound up confined to 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 Spinal Muscular Atrophy (SMA) only affects approximately 1 in 6,000 children. Raising a special needs child 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, than 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 am forced to 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 Fulton or Teddy. 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.
As much as people say I’m so special and great, they don’t want to be like me. When you say “You’re so amazing! I couldn’t do what you do!” I hear you putting me on a pedestal and, in some cases, trying to excuse your own decisions. Rather than be inspired by my family and think, ‘Maybe I can do that too.’ you excuse yourself as being too impatient, too busy, too selfish, ignoring that I’m a sinner same as you,
We can do hard things. We often stunt our own growth by trying to avoid anything uncertain or uncontrollable. With faith, we can step out of the box. We can take risks. Not skydiving, bungee cord jumping, adrenaline pumping risks that require a GoPro strapped to your chest, but the risks that arise when we admit we’re not in control and that’s okay. Life will be okay. Our family’s life will be okay. Even if it’s sometimes hard and messy, it will be okay, and more often than not, better than okay. It will be better than the safe, confined life you tried to constrain yourself to. It’s the fear of the uncertain that often limits us from experiencing greater love than we can imagine. 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.
There is joy and freedom in trusting in God and allowing Him to improve you, and your family by your joyful surrender. I thought that’s the message I was sending with my example, but I see now that people are still so wrapped up in what this world presents as ‘the perfect life’ that the only way to comprehend my life is to view it, at best, as exceptional, and at worst as an aberration against nature.
Instead of praising my mothering because I don’t make special needs parenting look awful, consider instead paying a compliment to any other mother you know. Tell her how well-mannered her children were at a parish dinner, how kind you saw them be to smaller children. Tell the struggling new mom how you can see how hard she’s working despite the exhaustion. Compliment any mom who is doing the best at her vocation no matter what hand she’s been dealt. Single mom, mom of one, mom of many, adoptive mom; all mom’s enjoy praise for a job well done.
Remember my example and my sons smiling faces when you or a loved one is facing a difficult medical diagnosis. When circumstances seem insurmountable, and your world is rocked, then I hope my words can help and inspire you to find the courage and the hope you need to trust in God and not fall into despair. Thank me then because I helped you see your problems in a new light, or because sharing my family’s story helped reassure you that things would somehow turn out all right. That is why I write about SMA. If I can do this, anyone can.
This post originally appeared on 'This Ain't the Lyceum'.