5 Things New Parents of Kids With Skeletal Dysplasias Need to Know

My daughter was born healthy at 8 pounds and grew and developed as any typical child. We never had an inkling until she was 2 that there was anything different or amiss about her body.

We were sent into turmoil following an x-ray appointment after her 2-year well check-up. After visiting the genetics department at a big Chicago hospital, she was given a diagnosis of pseudoachondroplasia, a rare skeletal dysplasia. To say we were thrown off our rockers was an understatement. Our daughter, they explained, would be short in stature, have early and lifelong joint problems, bone deformities… the list seemed to go on forever. I scribbled notes on a pad, not understanding half of what I was writing. Not knowing the new life journey I was being sent on.

I held my daughter each night and sobbed while singing her songs. She wiped my tears and told me not to cry. The days went on and the world turned, even though I didn’t feel like I was moving.

Little did I know that as life went on, as I would make friends, connections and partners in this life journey; things would get easier. Over time, I realized that yes, my daughter would face challenges that I knew nothing about, but as her mom, I would help her face them. I would do all I can to help her overcome differences and help the world around her understand differences. It was now my life calling to help educate, inform and be more understanding and tolerant. I felt a new importance to my life, something that wasn’t there before.

I slowly began looking at the world and people differently, feeling their pain and understanding them in a new way. I also learned I hated the word “normal” when talking about “healthy” children. All kids are normal — including my own. She may have pseudoachondroplasia, but that doesn’t define her. It’s just a tiny part of her. She’s one of the smartest, most compassionate and most aware 5-year-olds I know. She will learn to love and accept others in a way that others will never get the chance to learn. Our whole family will — our kids are being instilled with a lesson of love and compassion for the world around them.

I am blessed beyond belief and lucky that she calls me mom. I’m thankful for her each and every day, and know that things will be OK. And not just OK, they will be great.

Here’s what I think all new parents of children with skeletal dysplasias should know:

1. Every accomplishment — down to the smallest thing like learning how to step up a curb without help — will mean the world to you. You will feel a pride many other parents are not lucky enough to know. You will take nothing for granted, and celebrate every success of your child. Your highs might be higher and lows lower than others. Hold onto those highs and keep them close to your heart.

2. You will find many along a similar journey and many to support you, but all our journeys are unique. You will learn how you want to handle your own situations and how to teach your own child. I am not comfortable referring to my daughter as a “little person,” though so many with a form of dwarfism are OK with it. I choose not to label my daughter in any way, and I respect those who choose to use that term or others. You choose your journey and respect other journeys.

3. Your child’s diagnosis and this new journey you are on will make you a better person; this I promise you. I could not even see far enough down my black tunnel a few years ago to understand this, but I am learning. I have a long way to go, but I do know that in a few quick years I am a stronger, more tolerant, understanding, compassionate, giving and kind person than I ever was. I have a hard time believing the “I was given this child for a reason” scenario, but sometimes I do have to wonder if there’s some truth to it.

4. You will become ultra sensitive to all discussions/comments regarding size, whether it’s about being very tall or very short. People say things — lots of thing without even thinking twice — and you have to take it with a grain of salt. I’d spend my days sad and angry and hurt if I let everyone’s comments (not even about my daughter) get to me. Yes, they do sometimes, especially if coming from people I care about, but I do my best to move on. Know that most people don’t mean anything by it and you likely wouldn’t have thought twice about commenting on size or growth if you weren’t in this boat. Speak up when you choose to — pick your battles.

5. Read and take comfort in the famous “Welcome to Holland” story by Emily Perl Kingsley. I know it saved me in my darkest hour many times. It’s something many people will never be privy to if they are not given a reason to read it. I cannot recall who exactly sent it to me, but I do know I’ve read it time and again, and it is very special and so true. It takes time to believe. You will have many moments where you wish you had the trip to Italy, but in time you will understand that Holland really is much better.

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