As a mother to a spirited 3-year-old and the wife of a service member, I’m also navigating the journey of expecting my second child this coming September. On top of that, I live with a rare form of dwarfism known as diastrophic dysplasia, which puts me at the same height as my son, Leo. I’ve never let my disability define who I am; I’ve always chosen to live life on my own terms. At 15, I made the significant decision to undergo limb lengthening surgery for greater independence. While I was told I might only gain 3 inches, I ended up adding a remarkable 14, allowing me to stand proudly at 4 feet 10 inches.
Many assume that having children is out of reach for people with diastrophic dysplasia. However, my sister-in-law offered to be my surrogate before my husband, Mark, and I even considered the possibility of parenthood. But when Mark returned from a year-long deployment, we discovered that having a family was indeed possible. Leo was born at a healthy weight of 6 pounds, 10 ounces, far exceeding the 3-pound expectation set by my doctors. Proving doubters wrong has given me a positive outlook on parenting. Whenever Leo and I venture out in public, I often catch curious glances that seem to ask, “How does she manage?” I suspect that some onlookers wish they could peek into our lives to find out more.
In response to this curiosity, I’ve compiled a list of common questions people might have about parenting with a disability, along with my insights that may surprise and inspire you.
How did you have a baby?
A neighbor once mistook Leo for a child I was babysitting, which left me baffled. Why was it so hard to believe he was mine? I later realized that he wasn’t being unkind—just genuinely confused. The truth is, I often wonder how I managed to have a baby myself. I faced numerous challenges during my pregnancy, including requiring assistance for basic tasks, difficulty breathing, and reliance on a wheelchair. When a fully capable friend confided in me about her struggles with pregnancy, it dawned on me that the challenges of motherhood transcend disabilities. Every mother, regardless of stature or ability, grapples with the same fundamental question: “How do we do it?” The experience of motherhood is incredible, and we should celebrate our achievements—even if it means treating ourselves to something nice.
How do you discipline when your child is physically more capable?
By the time Leo was 9 months old, he was already on the move, and by age 2, he could easily reach places I couldn’t. His energetic nature often complicates discipline. However, I have one advantage over him: my intellect. Leo craves attention and approval. When I choose to ignore him or step away from a situation to regain control, he pauses and reevaluates. I’ve learned to observe closely what motivates him. This is where my disability becomes an asset. I’ve seen my husband, who is physically fit, struggle to keep up with Leo, often asking me for guidance in managing our son. I remind him, “Brains over brawn.”
What fears do you have as a disabled mom?
Honestly, I dislike this question because it opens a floodgate of concerns. As a child, I dealt with so much anxiety that I developed a stress ulcer. Now that I’m a mother, my worries have multiplied: Am I providing Leo with the best opportunities? What if he wanders off? What if he gets hurt? Or worse, what if I face a situation involving his safety? These fears aren’t unique to my disability; they’re a universal part of motherhood. One day, Leo discovered how to open the storm door, and when I realized he was halfway down the driveway, my heart raced. Fortunately, a neighbor intervened. Ultimately, a good mother worries, learns, and accepts help, while a great mother embraces all of these aspects without guilt.
Does Leo notice your disability?
When we go out, I occasionally use a wheelchair, and Leo loves to take the lead, often pushing me around. I sometimes wonder if he helps me because he sees his father do it or if he is aware of my differences. Regardless, as long as I actively engage with him, he is content. I was raised to understand that differences only matter if we let them. If I instill in Leo that my disability doesn’t limit my abilities or character, he will see me as fully capable.
Oh no, I’m sorry my child asked that!
During one of Leo’s swimming lessons, a young girl inquired, “Why is she so small?” The mom looked mortified. But I believe it’s vital to recognize that children ask these questions out of pure curiosity, trying to understand the world around them. My mother always reminded me, “It’s not always about you.” While these inquiries may seem awkward, they provide opportunities for education and dialogue. I assured the mother that it was a perfectly valid question and explained, “I’m small because my bones don’t grow.”
As Leo grows and we encounter more people, I expect there will be more questions and opportunities for me to expand my perspective on motherhood. There’s no manual for parenting, and especially not for parenting with a disability. But every moment is about adapting and overcoming—an experience that unites us all.
For more insights on fertility and parenting, check out this resource on IUI success and learn about how Make a Mom alleviated the stress of trying to conceive.
In conclusion, while parenting comes with its unique challenges, the universal themes of love, care, and adaptation are what truly connect us all.