By: Jamie Taylor
Updated: Sept. 1, 2015
As a proud mother to an energetic 3-year-old named Leo, I also identify as a military spouse and am excitedly awaiting the arrival of my second child this September. I live with a rare form of dwarfism known as diastrophic dysplasia, which ironically puts me at almost the same height as my son. Despite this, I’ve never let my disability define me, choosing instead to live life on my own terms. At 15, I underwent limb lengthening surgery, aiming for independence. Though I was told I could only gain a mere 3 inches, I ended up growing a total of 14 inches, transforming my height from 3 feet 5 inches to a proud 4 feet 10 inches.
Many people assume that having children is out of reach for those with diastrophic dysplasia. Before my husband, Mark, returned from a year-long deployment, my sister-in-law, in a well-meaning but unsolicited gesture, offered to be my surrogate. However, life took a joyful turn when I discovered that we could have children after all. Leo was born weighing 6 pounds, 10 ounces, significantly above the 3-pound goal set by my doctors. This triumph over doubt keeps my perspective bright as I navigate the challenges of parenting.
Whenever Leo and I venture out—be it to a restaurant, pool, or grocery store—I often encounter curious glances from strangers, as if they are silently asking, “How does she do it?” Behind that curiosity, I suspect many would love a peek into my life for answers. So, I’ve decided to tackle the top five questions I believe many people have about parenting with a disability, but might not feel comfortable asking. These insights might inspire you and perhaps resonate with your own experiences, regardless of your circumstances.
“How did you give birth?”
A neighbor once mistook Leo for a child I was babysitting. It took me a full five minutes to convince him that Leo was indeed mine! Initially, this puzzled me. Why was it so hard to believe? I realized he was simply confused, not malicious. The truth is, I often wonder how I managed to have a baby myself. To be honest, I don’t have a clear answer. During my pregnancy, I faced numerous challenges, including needing assistance with basic tasks and relying on a heart monitor. When a fully capable friend of mine expressed her challenges with pregnancy, it hit me that the struggles of motherhood aren’t exclusive to those with disabilities. All moms—regardless of size or ability—ask, “How do we do it?” Motherhood is remarkable, and those questions often arise from genuine curiosity.
“How do you discipline a child who’s stronger than you?”
By 9 months, Leo was nearly running, and by age 2, his reach surpassed mine. His name suits him well! One moment he’s balancing on kitchen counters, and the next, he’s across the room—his agility can be a real challenge when it comes to discipline. Yet my greatest advantage lies in my intellect. Leo craves attention and seeks to please. When I ignore him or walk away, he often pauses to reconsider his actions. Understanding his motivations allows me to navigate discipline creatively, and I’ve found that sometimes, brains truly do triumph over brawn.
“What are your biggest fears as a mom with a disability?”
This is a question I dread because the answers are endless! As a young girl, I worried excessively, leading to a stress ulcer. Now, as a mother, my worries have multiplied. Am I giving Leo the best opportunities? What if he wanders out of sight? What if he falls and gets hurt? Or worse, what if I face the unthinkable? These fears are universal among mothers. One day, I mistakenly left the front door unlocked, and in a panic, I discovered Leo halfway down the driveway. I’ve never moved so quickly! Thankfully, a neighbor helped, reminding me that motherhood is about shared instincts, not blame. A good mom worries and learns, while a great mom embraces those feelings unapologetically.
“Does Leo notice your disability?”
During longer outings, I often use a wheelchair, and Leo eagerly takes on the role of my helper. He pushes me around stores, guiding me to the aisles he finds fascinating. I sometimes wonder if he helps me because he sees his dad assist me or if he genuinely recognizes my differences. What I do know is that as long as I engage with him, he’s happy. I grew up believing that our differences are only as significant as we make them. If I can show Leo that my disability doesn’t define my capability, he’ll learn to see me as just as able as anyone else.
“Oh my God, I’m so sorry my child asked you that!”
At one of Leo’s swimming lessons, a curious little girl asked her mom, “Why is she so small?” Later, while picking up dinner, I overheard a child asking a cashier, “Why are you missing teeth?” In both instances, the parents were mortified. It’s natural to feel taken aback by children’s curiosity, but we must recognize that their questions arise from a desire to understand the world around them. As my mom often says, “It’s not always about you.” Children thrive on details, and their sincere inquiries encourage them to explore life’s differences. While these questions can be awkward, they offer a chance for healthy dialogue.
As Leo grows and we encounter new experiences together—through sports, school, or simply out and about—there will be more questions and opportunities for me to expand on my views of motherhood. One day, I anticipate that Leo will field questions from his peers about my disability, and I’ll be ready to support him. There’s no definitive guidebook for parenting, least of all for parenting with a disability. Ultimately, every moment involves adapting and overcoming, an experience that unites all parents.
Summary
In her heartfelt reflection, Jamie Taylor shares the challenges and triumphs of parenting while living with diastrophic dysplasia. She highlights the curiosity of others regarding her ability to mother and how she navigates various aspects of raising her son, from discipline to fears and beyond. Through humor and honesty, she emphasizes that motherhood transcends physical abilities, uniting all parents in their shared experiences.