The Biggest Lesson My Daughter's Dwarfism Diagnosis Has Taught Me
The birth of my first child made me a mother. The birth of my second child made me an advocate. It’s a road I never in a million years expected to be on, but one that I believe I was called for.
My second child, Chloe, has achondroplasia which is the most common form of dwarfism. We don’t have a family history, so when I was seeing my MFM at 31 weeks for a routine growth scan (I had gestational diabetes and am “advanced maternal age” so these scans were typical), I never thought I was going to walk out of that appointment with the word “achondroplasia” ringing in my head (and yes, I ran straight to Dr. Google and fell down that rabbit hole). I never thought I would be calling my husband from the car crying, “they think she has dwarfism.”
Four weeks later, the blood work we did for genetic testing came back: POSITIVE. At this point, we had had several scans while waiting for the lab results and saw very little growth in our unborn daughter’s long bones. We had a feeling this would be the diagnosis, but still, nothing can truly prepare you for the reality that something is different about your child. That the child you would be having only a month later isn’t the child you thought you were going to have. But it was also a relief to finally have an answer, to know the reason for the slow growth and to be able to prepare for her entrance into our lives.
This is not a “woe is me” story. It’s the complete opposite, so please don’t feel “sorry” for us. Because while dwarfism is a disability and she will have some tough times in her life, our family has never once felt bad about the situation. If anything we embrace it. Chloe is who she was meant to be. She is gorgeous, silly and smart. She is joy wrapped up in a body that was made special just for her. She is perfect. Chloe is a gift to our family. She not only completes us, but she has also been a teacher to us in ways that not many 17-month-olds can be. Because of her, and because I want the best life for her possible, I am now on a mission to educate and advocate.
The day we received the positive lab results, my doctor said to me, “Sometimes we never know why we are given the hand we are given. And sometimes we understand right away.” Instantly, I remembered a day twenty years ago when I was at the mall with a high school friend. As we were shopping, we encountered a Little Person along our way. And I pointed, laughed and said “I’ll probably have a midget someday.” Why, hello Karma. How she shows up at the most interesting times.
Why is this so important to our story? Because it’s important to know that anyone can have a child with dwarfism. That 80 percent of babies with achondroplasia are born to “average height” parents. Even if you think it will never happen, trust me, it can. And if it does, it will be a blessing to you and your family. Most people don’t see dwarfism as a disability, but simply as a difference to mock. Dwarfism comes with a slew of medical concerns such as sleep apnea, delays of milestones and narrowing at the spinal column that can cause compression and possibly death. We are lucky that Chloe has been as healthy as she has and, other than slow growing bones, has not exhibited any medical issues.
Also, it’s important to know that the M word is a slur. It’s one that I relate to the R word in how we use it as a derogatory way to describe a person. If there is one thing you can take away from this article it’s this: The M word is not funny. It’s an insult and a word that a whole population of people take offense to. Let’s work to remove this from general vernacular. Call it out when you see or hear it. Since last year I have successfully worked with two food industry manufacturers to remove this word for labeling. Anyone can speak out when they hear derogatory slurs, you do not need to be part of that community.
In the words of Peter Dinklage “Dwarves are still the butt of jokes. It’s one of the last bastions of acceptable prejudice.” Together I think we are capable of raising children that are inclusive and kind. I hope we can finally see those with dwarfism as peers, rather than people to mock. I worry daily about my sweet beautiful daughter once her differences are more noticeable. I am terrified of the first time she’s called an “M” or has her picture taken by a stranger. (It does happen. A lot. Social media is flooded with pages dedicated solely for these photos and harsh comments.)
I wish that 15-year-old version of me understood that dwarfism is a disability and not something to laugh at. Just because someone’s bones grow a bit slower, it doesn’t make them less than or not as intelligent. Kids like my daughter are just as able.
So fellow moms, whether you are eagerly awaiting the birth of your first born, or are in the throes of toddler meltdowns or pre-teen eyerolls I beg you to please teach your child that being different is okay! Having friends that are different from them is amazing—it exposes them to other ways of viewing the world. Teach your children to simply be kind. When your children see someone different than them, allow them the opportunity to ask questions. By hushing them, whether it’s because you might not want to insult the person who is different or because you might be embarrassed, it actually teaches your children that being different is odd, taboo. Let’s have these conversations at home, with each other. I have faith that this generation of parents and children are going to make huge strides in being more inclusive to all walks of life. I am excited to be on this journey with you!
From the corporate world, to stay-at-home mom, to advocate, Melissa dives head first into any twist the journey gives her. With the birth of her second child, she found herself at a place she never thought she would be: a mother to a child with special needs. Instead of letting it get her down, she uses her passion to advocate about her child’s Dwarfism diagnosis by educating and fundraising. When the Horvath family is not advocating, they can be found in their Brooklyn residence having living room dance parties, playing dinosaurs or enjoying family pizza night. They are a regular family on a remarkable journey to raise awareness of kindness and acceptance. You can follow their journey on Instagram @the_fourvaths.
Published February 2021