As a mother to an energetic 3-year-old, I navigate the joys and challenges of parenting while managing a rare form of dwarfism known as diastrophic dysplasia. I’m also a military spouse, expecting my second child this September. My height is nearly the same as my son, Leo, which can lead to unique experiences in our daily lives. I have never allowed my disability to define my existence; instead, I have always lived life on my own terms. At 15, I took significant steps toward independence by undergoing limb lengthening surgery, which resulted in an increase from 3 feet 5 inches to a proud 4 feet 10 inches.
Contrary to common assumptions about individuals with diastrophic dysplasia, I was able to have children. My sister-in-law generously offered to be my surrogate before my husband, Max, and I had even considered parenthood. However, when Max returned from deployment, we discovered that having children was indeed a possibility. Leo came into the world weighing 6 pounds, 10 ounces, exceeding the 3-pound target set by my doctors. Achieving what many thought was impossible helps me maintain a positive outlook in my parenting journey. While out in public—whether in a restaurant or grocery store—I often encounter curious glances, as if people are silently asking, “How does she do it?” To shed light on some of these curiosities, I’d like to address five common questions about parenting with a disability that many may hesitate to ask.
How Did You Have a Child?
A neighbor once mistook Leo for a child I was babysitting. After a moment of confusion, I assured him that Leo was indeed my son. It was disheartening to realize the disbelief stemmed from my disability, but I understood it came from a place of curiosity rather than malice. The truth is, I faced significant challenges during my pregnancy: I required assistance with daily activities, struggled with breathing, and even had to wear a heart monitor. When a fully able friend expressed her struggles during pregnancy, it became clear that the challenges of motherhood extend beyond physical capabilities. Every mother—regardless of size or ability—faces the question of how we manage the demands of parenting, and it’s a shared experience worth celebrating.
How Do You Discipline Your Child When He’s More Physically Capable?
By 9 months, Leo was already on the move, and by two years old, his reach surpassed mine. His agility presents additional challenges when it comes to discipline. In moments of misbehavior, I rely on my intellect rather than physical strength. Leo is eager to please and responds well when I choose to walk away from a situation instead of engaging in a battle of wills. This approach often causes him to pause and reconsider his actions. My husband, a fit individual, sometimes struggles to keep up with Leo, leading me to remind him that “brains over brawn” is the key to managing our spirited child.
What Are Your Biggest Fears as a Parent with a Disability?
This question can be overwhelming because there are so many fears that come with motherhood. As a child, I experienced anxiety that led to a stress ulcer, and those worries have only intensified with parenthood. My concerns include ensuring Leo has the opportunities he needs to thrive and fearing for his safety. One incident that stands out occurred when Leo learned to open the front door, and I panicked when I found him halfway down the driveway. Thankfully, a neighbor stepped in to help, reminding me that parenting challenges unite us rather than divide us.
Does Leo Notice Your Disability?
When we go out, I occasionally use a wheelchair, and Leo often jumps in to assist. He seems to instinctively want to help, and I’m curious if he does this because he sees his father helping me or if he recognizes my differences. Regardless, he is always thrilled when I engage in his activities. Growing up, I learned that differences are only as significant as we perceive them. I aim to instill in Leo the understanding that my disability does not limit my capabilities.
How Do You Respond to Children’s Questions About Your Disability?
During one of Leo’s swimming lessons, a young girl asked her mother why I was small. In similar situations, I’ve noticed parents often feel embarrassed by their child’s innocent questions. However, I believe such inquiries stem from a genuine curiosity that should be embraced. Children ask questions to make sense of their world, and as adults, we must encourage their curiosity rather than shying away from it. I explained to the girl that I’m small because my bones don’t grow like others, and I found that to be a satisfying answer for her.
As Leo grows and interacts with more people, there will undoubtedly be more questions and opportunities for me to expand on my perspective as a mother. There is no manual for parenting, and especially none for parenting with a disability, but the essence of adapting and overcoming is a universal theme in the journey of parenthood.
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In conclusion, whether navigating the complexities of parenting with a disability or any challenges that arise, the journey is about learning, adapting, and fostering a supportive environment for our children.