Being a mom to my energetic 3-year-old, Charlie, is a journey filled with unique challenges and joys. As a military spouse and soon-to-be mother of two, I also navigate life with a rare form of dwarfism known as diastrophic dysplasia that places me at nearly the same height as my son. Rather than allowing my disability to define me, I’ve always embraced life on my terms. At 15, I made the life-altering decision to undergo limb lengthening surgery, gaining a total of 14 inches—transforming me from 3 feet 5 inches to a proud 4 feet 10 inches.
The notion that individuals with diastrophic dysplasia may not have children is a common misconception. Before my husband, Jake, returned from deployment, my sister-in-law generously offered to be my surrogate. However, when Jake came back, we quickly realized that having a family was within our reach. Charlie was born weighing 6 pounds, 10 ounces, shattering the expectations set by my doctors. This triumph fuels my positive outlook on parenting. When I venture out with Charlie—be it to a restaurant, a swimming pool, or the grocery store—I often catch curious looks from strangers that seem to inquire, “How does she do it!?” Behind this curiosity, I suspect many people wish they could witness the dynamics of our home life. So, I’ve decided to address five common questions about parenting with a disability that people are often too shy to ask, as I believe my answers will resonate with many, regardless of their circumstances.
How did you give birth?
I once had a neighbor inquire, “Who’s the little boy you’re babysitting?” It took me a moment to realize he was referring to Charlie. I spent a good chunk of time convincing him that Charlie was indeed my son. This experience made me ponder: Why was it so hard for him to believe? I recognized he wasn’t being rude; he was simply confused. The truth is, I often ask myself, “How did I manage to have a baby?” The answer remains elusive. I relied on help for basic tasks, faced difficulties breathing, used a wheelchair, and wore a heart monitor. When a fully capable friend shared her struggles with pregnancy—heartburn, back pain, and the risk of preeclampsia—I came to understand that challenges during pregnancy are not exclusive to individuals with disabilities. The journey of motherhood is filled with adaptations and triumphs, and perhaps all mothers—regardless of size or ability—should ask themselves the same question: How do we do it?
How do you discipline when your child is more physically capable?
By the time Charlie was 9 months old, he was practically running. By 2 years old, his reach surpassed mine. His agility creates challenges when it comes to correcting behavior. In these moments, I lean on my strongest asset—my intellect. Charlie is the type of child who craves attention. When I choose not to respond to his antics and instead walk away, he stops to reassess the situation, as if thinking, “This isn’t what I expected.” I’ve learned to observe his motivations to guide my responses. Interestingly, I’ve noticed that even my husband, who excels physically, sometimes struggles to keep up with Charlie’s energy. It’s moments like these that remind me: brains always triumph over brawn.
What are your greatest fears as a mother with a disability?
I dread this question—not because it’s too personal, but because the answers are endless. As a young girl, I experienced stress so intense that I developed an ulcer. Now, as a mom, my worries have multiplied. I often question if I’m providing Charlie with the best opportunities. What if he wanders out of sight? What if he gets hurt? Or worse, what if I face the unimaginable? These fears are universal among mothers. One day, I mistakenly left the front storm door unlocked, and my heart raced when I saw Charlie halfway down the driveway. My neighbor sprang into action alongside me, united by instinct rather than blame. Ultimately, every mom worries, learns, and prepares for the unexpected. An exceptional mom embraces these concerns without apology.
Does Charlie notice your disability?
When we’re out, I often sit in a wheelchair that my husband gladly pushes. However, Charlie frequently insists on taking over. If we’re shopping, he guides me to the aisles that catch his interest, leading us on our little adventures. It makes me wonder—does he help because he sees his dad do it, or does he genuinely recognize my differences? I’m not entirely sure yet. What I do know is that as long as I engage with his interests, he remains happy. I was raised to understand that differences are only as significant as we allow them to be. I want to instill in Charlie that my disability does not dictate my strength or willpower.
I’m so sorry my child asked that!
During one of Charlie’s swimming lessons, a little girl asked her mother, “Why is she so short?” Later in the grocery store, a boy asked, “Why is she missing teeth?” Both parents looked mortified. It’s easy to react defensively to such questions, but we should acknowledge the genuine curiosity behind them. Kids ask these questions because they are trying to make sense of their world. As my mom used to say, “It’s not always about you.” While these inquiries may be directed at us, they stem from a place of innocence. Children thrive on details; they encourage exploration and understanding. Yes, it can be annoying or random, but it’s rarely malicious. At the pool, I assured the mother that it was a valid question and explained, “I’m small because my bones don’t grow.” She smiled, and we shared a moment of connection.
As Charlie gets older and we encounter more people, I know there will be more questions and curious looks. Each interaction is an opportunity for me to expand my perspective on motherhood. There’s no handbook for parenting—and certainly none for parenting with a disability. Every moment requires us to adapt and overcome. Isn’t that a shared experience for all parents?
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In summary, parenting with a disability comes with its own set of challenges and triumphs, much like any other parenting journey. It’s about embracing our unique circumstances, learning through experience, and fostering understanding in our children.
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