What It’s Really Like Parenting With A Disability – Scary Mommy

What It’s Really Like Parenting With A Disability

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I’m a mom of one very vivacious 3-year-old. I’m also a military wife, expecting my second child this September, and, oh yeah, I have a rare form of dwarfism, called diastrophic dysplasia. This means I’m nearly the same height as my son, Titan. I’ve never defined my life by my disability, and have always lived on my own terms. That’s why at the age of 15 I underwent drastic measures—I chose to undergo limb lengthening in the name of independence. I was told I could gain only 3 inches, but totaled 14 when the lengthening process was over. Instead of standing at 3 feet 5 inches tall, I am now proudly 4 feet 10 inches tall.

Having children is also something one assumes will not happen for people with diastrophic dysplasia. My sister-in-law (graciously?) volunteered to be my surrogate before my husband, Eric, and I had the chance to consider if having children was right for us, or if it was even in the realm of possibility. But, when Eric returned from a yearlong deployment, life proved it was possible.

Titan was born 6 pounds, 10 ounces—a far cry from the 3-pound goal set by my doctors. Having accomplished what others doubted was possible helps me keep a positive perspective in parenting. Whenever my son and I go out in public (restaurant, public pool, or even grocery store) I am constantly met with looks from strangers that scream, “How does she do it!?” Tucked behind this curiosity, I bet some wish they could be a fly on the wall in my home to satisfy more follow-up questions, too. So, I thought I’d try to answer the top five curiosities about parenting with a disability that I assume many people have, but are too embarrassed to ask (because who wants to be that person?). My answers will certainly inspire, and may even surprise you. And I bet you’ll be able to relate—handicapped or not.

He came out of you!? How?

My neighbor once asked me, “Who’s the little boy you’re babysitting?” It took me a moment to realize he was referring to my son. I spent a good five minutes convincing him that Titan was mine. Later, it bothered me. Why was it so hard to believe? Then I recognized that he wasn’t being malicious, just super perplexed. I often wonder, How did I pull off having a baby? The answer: I have no damn idea. I needed help washing and dressing, struggled to breathe, became beholden to a wheelchair, and had to wear a heart monitor. When my fully capable friend called and announced she was pregnant and seriously struggling (heart burn, back pain, vomiting, and at risk for preeclampsia), I realized the hardships and the risks associated with pregnancy are not singular to my handicap. Or, to any handicap, for that matter. There’s a lot of adapting and overcoming to be done, none of which is glamorous. Maybe all mothers (big, tall, short, skinny, handicap or not), should all ask the same valid question: How do we do it!? It’s amazing (being a mother). And being asked that question, “how do you do it?” doesn’t always hold malice behind it. Once we realize how amazing we are, we should treat ourselves to a nice pair of shoes, a martini, and a new purse.

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©Tiffanie DiDonato

How do you discipline your child when he’s more physically capable than you?

At 9 months, Titan was up and practically running. At 2-years-old his reach exceeded my own. His name suits him perfectly, maybe too perfectly. One moment he’s balancing on the kitchen counter and in the next flash he’s across the house. His beautiful ability to maneuver with speed and agility poses a real issue when it comes to correcting certain behavior. I’m left with the one asset more developed than his—my brain.

Titan is the kind of boy who hates to be ignored. He aims to please. When I refuse to acknowledge him or take part in that proverbial game of control, and choose to walk away, Titan stops and reconsiders what’s happening. It’s as if he’s feeling, This isn’t what I planned. I have to listen, watch closely, and learn what drives him. This is where my handicap is an advantage. I’ve watched my husband (a man who can get a perfect score in a Combat Fitness Test) get winded from fighting to corral Titan. Eventually, Eric declares, “Babe, what do I do?” It makes me feel good to reply, “Brains over brawn, young Padawan.” Brains over brawn.

What are your biggest fears as a handicapped mom?

Admittedly, I hate this question. Not because I find it invasive or too personal to delve into. Rather, because this question possesses endless answers. When I was 12, I worried about a good amount of things, so much that I eventually developed a stress ulcer. As a mom, I now worry about everything under the sun. Am I giving him the best opportunities to thrive? What if Titan runs away from me and out of my sight? What if Titan falls and breaks something—anything? Or the worst, what if I am ever faced with his own mortality?

None of these things I believe to be particular to my disability, just to motherhood. Titan was a little over a year old when he realized how to manipulate the front storm door. Once I left the door unlocked by mistake. My heart stopped when I realized he was more than halfway down the driveway. I’ve never moved so fast in my life. That day, my neighbor was enjoying a cup of coffee on her porch. She jumped into action, too. There we were, united by instinct; not divided by blame. The bottom line is a good mom worries, learns from the past, accepts help and prepares for the next possible situation. A great mom is unapologetic for doing all of the above.

Does Titan notice your disability?

For prolonged excursions, I’ll sit in a wheelchair and enjoy being pushed by my husband. Titan will—every time—push Daddy aside and take over. If we are out shopping, he brings me to areas of the store he finds interesting. Together, we’ll crash into things and try our best to avoid others. And I wonder, Does Titan help me because he sees Daddy help me? Or does Titan want to help because he genuinely notices I am different? It’s a question I’m asked often. Right now, I’m not entirely sure. What I am sure about, is he’s happy as long as I show interest in what he’s trying to accomplish. As a child, I was taught differences are only as big as we make them out to be. The idea is similar to what many moms do when their child stumbles—don’t react and make a mountain out of a molehill. One day, Titan may see I maneuver through this world differently, but if I teach him Mommy’s disability doesn’t define her will or character, then he’ll see me as just as capable as he is.

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©Tiffanie DiDonato

Oh my God, I’m so sorry my child asked you that!

While I was at Titan’s swimming lesson, an adorable little girl asked her mom, “Why is she so small?” Later, while picking up dinner at the store, I overheard a little boy question the cashier, “Why are you missing teeth?” In both cases, the parent was mortified! It’s easy to be taken off guard by such curiosity, but I feel it’s even more important to consider the genuine place these questions are coming from. Children ask indiscriminate questions of all kinds because they are trying to make sense of the world they live in. I’m reminded of what my own mom says, “It’s not always about you.” Though the questions are directed at us, it’s not necessarily about us as individuals. As adults, we need to remember children thrive on details and the minutia of explanation. It encourages them to learn more, and to discover and explore life’s differences in a healthy manner. Annoying at times? Yup. Random? Totally. And without a filter? Absolutely. But, filled with malice? Collectively, let’s get over ourselves. Back at the pool, I assured the mom it was a great question. Then I happily answered, “I’m small, because my bones don’t grow.” My answer satisfied her. She smiled and then she showed me her new sparkle flip flops.

As Titan gets older and the more people we encounter together, be it through sports, school or just around town, I’m sure there will be more questions asked, more perplexed looks. And there will be more opportunities for me expand to my own perspective on motherhood. I’m also waiting for the day I’m not asked anything at all, but Titan is and by his own peers. There’s no such thing as a brochure to parenting. And a brochure to parenting with a disability? That doesn’t exist, either. Every moment revolves around adapting and overcoming. Though, isn’t that an aspect of parenthood that unifies us all?