Hey there! I’m a mom to my energetic 3-year-old, Leo. I’m also a military spouse and expecting my second child this September. Oh, and I have a rare form of dwarfism known as diastrophic dysplasia, which means I’m almost the same height as my son. My disability has never defined me; instead, I’ve always lived life on my own terms. At 15, I made a bold choice to undergo limb lengthening surgery to gain more independence. I was told I’d only gain three inches, but I ended up growing a total of 14 inches! So now, instead of being 3 feet 5 inches tall, I proudly stand at 4 feet 10 inches.
Having kids is often thought to be off the table for people with diastrophic dysplasia. My sister-in-law, being the lovely person she is, offered to be my surrogate before my husband, Mark, and I even considered having children. But when Mark returned from deployment after a year, life showed us that it was indeed possible. Leo was born weighing 6 pounds, 10 ounces—far exceeding the 3-pound goal my doctors had set. Proving the doubters wrong has given me a positive outlook on parenting.
Every time Leo and I venture out—whether it’s a restaurant, a public pool, or the grocery store—I can feel the curious gazes from strangers. They seem to wonder, “How does she manage all of this?” I imagine some of them would love to be a fly on the wall in my home to satisfy their curiosity. So, I thought I’d share the top five questions people might have about parenting with a disability, as I bet many are too shy to ask.
“Wait, he came from you? How’s that possible?”
One day, a neighbor of mine asked me who the little boy I was with was, completely unaware that Leo was mine. I spent a good five minutes convincing him otherwise. It was surprising to me that he found it so hard to believe. The reality is, I had a challenging pregnancy. I needed help with daily tasks, struggled with breathing, relied on a wheelchair, and even had to wear a heart monitor. When a capable friend of mine shared her own pregnancy struggles—heartburn, back pain, and high-risk factors—I realized that challenges during pregnancy are universal. Every mother, regardless of her height or ability, faces significant obstacles. It’s a miracle, really, and we should all treat ourselves to some self-care—be it a nice pair of shoes or a well-deserved drink.
“How do you discipline when your child is more active than you?”
By 9 months, Leo was practically running, and by age 2, he was climbing to heights I couldn’t reach. His agility can be a challenge when it comes to discipline. Fortunately, I have my brain to rely on. Leo hates being ignored, and when I choose to walk away during a disagreement, he often stops and re-evaluates the situation. Understanding his motivations has been key—engaging with him intellectually is where my strength lies. I’ve seen my husband, who excels in physical activities, get exhausted trying to keep up with Leo. I love telling him, “Brains over brawn, my friend!”
“What keeps you up at night as a mom with a disability?”
This is a tough question for me because the answers are numerous. As a child, I worried a lot and developed a stress ulcer by the age of 12. Now that I’m a mom, my worries have multiplied. I think about whether I’m giving Leo the best opportunities to succeed, what if he wanders off, or even the terrifying thought of facing his mortality. These worries are universal to mothers, not just those of us with disabilities. There was a moment when Leo was just over a year old, and I accidentally left the door unlocked. My heart stopped when I saw him halfway down the driveway. Luckily, a neighbor jumped in to help. The takeaway? We all worry, learn from our experiences, accept help, and prepare for future challenges. Great moms are unapologetic about it!
“Does Leo notice your disability?”
Whenever I’m in my wheelchair, Leo instinctively takes over and pushes me around. I sometimes wonder if he helps because he sees Daddy do it or if he genuinely recognizes my differences. Right now, I’m not entirely sure. What I do know is that he’s happy as long as I engage with him. Growing up, I learned that differences are only as significant as we make them. If I teach Leo that my disability doesn’t define my capabilities, he’ll understand that we all have our unique strengths.
“I’m so sorry my child asked that!”
At one of Leo’s swimming lessons, a little girl asked her mom why I was so small. I’ve overheard similar questions in other settings, and while some parents might feel embarrassed, I think it’s crucial to remember where that curiosity comes from. Kids are just trying to make sense of the world. I told that mom it was a great question and explained, “I’m small because my bones don’t grow.” It’s about creating an environment where curiosity leads to understanding, not fear. As Leo grows, I’m sure there will be more questions, and I’m ready to embrace them as opportunities to teach.
Parenting with a disability may not come with a handbook, but neither does parenting in general. Every day is about adapting and overcoming challenges, which is something all parents, regardless of their circumstances, can relate to.
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Summary
In this article, a mom with diastrophic dysplasia shares her experiences of parenting with a disability, addressing common questions and misconceptions. She discusses the challenges of pregnancy, discipline, and fears, while highlighting the importance of adaptability and understanding in parenting. Ultimately, she emphasizes that all parents, regardless of their circumstances, face similar challenges and that curiosity from children should be embraced as a learning opportunity.