If I grew an inch every time I was handed a children’s menu and crayons while out to dinner with my family, I’d no longer have dwarfism.
I’m 34 years old and the only one in my family with diastrophic dysplasia, a rare form of short stature that affects my long bones.
But it has never stopped me from living life on my own terms. It was this get-out-of-my-way attitude that motivated me to take drastic measures and undergo the controversial limb-lengthening procedures in order to live more independently. Thanks to that decision at age 15, I stand not at 3.5 feet tall, but confidently at 4 feet 10 inches. So imagine my shock while out to dinner with my friends, family and 3-year-old son, Titan, when the hostess handed me my own set of crayons and a coloring book.
I had said it didn’t bother me.
My husband, a 6-foot-tall staff sergeant in the Marines, had daggers in his eyes, but said nothing. My friend assured me it happened because I look so young. I should take it as a compliment, she said. Still, I was mortified and felt degraded. Insulted. And hurt.
It happened right in front of my son, and though he may be too young to understand my feelings about the situation, the gesture confirmed my deepest fear: I don’t function or look like other normal moms, and therefore I am incapable of raising my little boy.
When I was pregnant, I was faced with a lot of scary possibilities. A large portion of me didn’t believe I could get pregnant. When my husband returned from his year-long deployment in Okinawa, we found out otherwise. I was a high-risk mom and Titan was a high-risk baby. I had to wear a heart monitor, had severe episodes of tachycardia —nearly passing out several times — and gradually went from walking independently to maneuvering in a wheelchair. Then there was the issue of my delivery. Due to the curvature of my spine, an epidural was ruled out. The best option was a C-section while sedated under anesthesia.
Titan was born 6 pounds, 10 ounces. I accomplished what I, what others, thought wasn’t possible. Today I have a happy, healthy and beautiful little boy. He will eventually stand far taller than me and function in this world in a way I can only dream of doing.
To me, being a mom means more than just packing his lunches with an I Love You note, changing diapers, breastfeeding, extending the family or childproofing my home.
For me, being a mom means being taken seriously in life by others. It means I am worthy enough to take care of someone else. It means being looked up to, loved and trusted. Depended upon. More than this, it means being seen as equal among other women, a struggle I have always battled with.
Thanks to that hostess, I was forced to question what makes me worthy to be called Mom. And that triggered something far more upsetting: It caused me to overanalyze my son’s personality. Was Titan’s need to be helpful towards me because I taught him to be compassionate? Or was it because he viewed me as helpless? Does Titan desire to be independent because it’s inherent to himself? Or is it because he feels he can’t rely on me? And then there was the question I had always wondered about, but avoided: What is a “normal mom” supposed to look like, anyway?
On some level, I believed Mom should resemble Brooklyn Decker in the film What to Expect When You’re Expecting. Or look like Australian model Sophie Guidolin, who confidently posed nude while pregnant. Both completely gorgeous, completely in tune with their growing bodies, neither likely to be handed a box of crayons at dinner. Just as there is pressure to be skinny, I’m realizing there is an equal dose of stress to be a picture-perfect mom.
Many mothers struggle with their feelings of inadequacy. Studies show some women even put off having children, because they struggle with their body image and fear it will only get worse during and after pregnancy. But here’s what I didn’t know. A mother’s perception of herself plays a gigantic role in her child’s self-esteem. So how I respond to others about my disability will shape how my son responds to the world and those around him. Scarier yet, if I lack confidence and body shame myself, then Titan may never feel worthwhile.
Five months ago, I gave birth to my second son, Tristan. The pregnancy took a harder toll on my body. Getting back on my feet will take longer this time. But if I’m ever going to allow myself to get lost in the joys of being a mom to two gorgeous little boys, then I have to accept something I should have learned a long, long time ago. That normal and perfect mom? She doesn’t exist!
Dwarfism is very much a part of my life that I can’t escape. Yes, both my kids see my good days, where physically maneuvering through the world brings me nothing but happiness and zero pain. They see my bad days, too, where I feel as though my body is purposely revolting against me.
I can’t hide my struggles from my children. Nor should I want to. Perfection is unrealistic, but obstacles are real. Even getting one’s ego hurt while out with friends and family is, well, part of living life. The way my body looks or moves will never define how good a parent I am. How I teach my kids to respond and persevere over adversity will determine the kind of parent I am.
“Mommy, let’s go to a restaurant!” Titan shouts happily after gymnastics. And when we do, just before he gets his usual mac and cheese, I open that box of crayons and happily color with him.
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