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. One that made me a mother to a very precious special needs child.
Our Special Needs Journey Begins . . .
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 doctor 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 bloodwork we did for genetic testing came back. POSITIVE. At this point, we had several scans while waiting for the lab results and saw very little growth in our unborn daughter’s long bones, so we had a feeling this would be the diagnosis. Still, nothing can truly prepare you for the reality that you’re about to have a special needs child and 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.
Our Little Daughter is Perfect
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. Chloe is joy wrapped up in a body that was made special just for her. She may have special needs, but she is PERFECT.
The day we received the positive lab results, my doctor said to me, “Sometimes, we never know why we’re given the hand we are given. And sometimes we understand right away.” Instantly, I remembered a day twenty years ago while 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.
Anyone Can Have a Child with Dwarfism
Why is this so important to our story? Because its important to know that ANYONE can have a child with dwarfism. That 80% of babies with achondroplasia are born to “average height” parents. Also, it’s important to know that the M-word is a slur, one that I relate to the R-word in how we use it as a derogatory way to describe a person. Earlier this year, I successfully partnered with the Little People of America to have the M-word removed from packaging being used by a food industry manufacture. 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 takes offense to. Let’s work to remove this from general vernacular.
Chloe is a gift to our family. She not only completes us, but she also has been a teacher to us in ways that not many 15-month-olds can be. Because of her and wanting the best life for her as possible, I am now on a mission to educate and advocate. In Peter Dinklage’s words, “Dwarves are still the butt of jokes. It’s one of the last bastions of acceptable prejudice.” Together I think we can raise children that are inclusive and kind. And finally, see those with dwarfism as their peers and not something to mock.
How You Can Teach Your Children Acceptance of Dwarfism
I worry daily about my sweet, beautiful daughter once her differences are more noticeable. I’m terrified of the first time she’s called an “M” or have her picture taken by a stranger. 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. That kids like my daughter are just as able as your child.
So, fellow moms, whether you are eagerly awaiting the birth of your firstborn or are in the throes of toddler meltdowns or pre-teen eye-rolls, I beg you, please teach your child that being different is okay! That having friends that are different from them is amazing as it exposes them to other ways of viewing the world. Use every opportunity to teach them about special needs children.
Teach your children to be kind. When your children see someone different than them, allow them the opportunity to ask questions. By hushing them, whether 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” or taboo. Let’s have these conversations at home, with each other. I have faith that this generation of parents and children will make huge strides in being more inclusive to all walks of life, especially special needs children. And I am excited to be on this journey with you! My family greatly appreciates it.