FunSize: Coming to Terms with My Daughter’s Achondroplasia Diagnosis

It was the last Friday of September 2016, a week since our visit with the geneticist. I had not thought much about the impending results of Eden’s skeletal survey. I had prayed, and in my life, prayer had always been enough. That gorgeous September day had been well spent with my 5-month-old baby girl. I recall dressing her after a warm bath and feeling the phone vibrate next to me. It was Eden’s pediatrician calling. I grabbed the phone wondering what could be so important at 7:30 p.m.

My heart skipped a beat and started to race as Dr. Johnson explained that Eden’s X-rays were back. I held my breath as the doctor continued to tell me that she had just hung up with the geneticist.

Eden indeed had some form of Dwarfism. I could hear Dr. Johnson talking, but she seemed to be so far away at the moment, and I was struggling to hear all the words. Struggling to fight back tears that I didn’t want my baby girl to see. My heart was deep in my throat, and it was raging some type of war. She asked if I was okay and mentioned something about how they assumed it was something worse. Dr. Johnson was relieved to find out it was what she had expected all along — Achondroplasia, the most common form of Dwarfism.

How could I possibly be okay? How was this fair to my baby girl when I had already almost died on her? She had only been a week old, and I had missed out on the second and third weeks of her life. Hadn’t that been enough? I was still healing from such a traumatic experience.

But there was no time to fall apart; Eden was in my arms looking up at me. I assured Dr. Johnson that I would be okay. She informed me that genetics wanted to see Eden the following week and to call her if I needed anything. Why did this woman need to be right? She had been determined to prove all of those specialists wrong; everyone who continued to report back to her that Eden was just small and not to worry. She never gave in and insisted that there was more going on with my baby girl. While I knew she only had Eden’s best interests at heart, it still stung to know the truth.

On October 5, 2016, Eden was officially diagnosed by the genetics team with Achondroplasia and Kyphosis, a curvature of the spine commonly associated with Dwarfism. I fought back tears again, because I didn’t want to be weak, and I didn’t want my daughter to see me upset. I didn’t want the genetics team to assume that my fear diminished my unconditional love for my daughter. The doctor smiled at Eden as he squeezed my shoulder. He held on to her and assured me that she was going to be okay. He said it would be a different life, but full of unlimited possibilities.

I conjured up a smile to let him know that I believe him, and I did. I wasn’t so concerned about Eden. I knew she was something special the day I met her and nothing changed those feelings. I just had so many feelings to sort through. I worried that people would not understand and would treat her differently. I just wanted her to have a fair chance at life without being discriminated against because of her diagnosis. Only one thing was clear at that moment — the life I had planned for my daughter had turned out to be the life she had prepared for me.

Needless to say, it’s been one heck of a journey. On April 27, 2018, Eden will be 2 years old. She has made me better, and her diagnosis has made me more aware, wiser, stronger. I have had to fight for her, for her care, for the right doctors. I am her voice and her caretaker, and I will always advocate for her; she is everything to me and for me. She’s a total blessing and is so amazing, I swear she has done life many times before.

There is absolutely nothing wrong with being afraid. I owned my fear, and I worked through it by educating myself on Eden’s diagnosis so that I could be the best mother and advocate to and for my child.

And so, I launched EdenOlivia.com, an online children’s boutique and blog. Proceeds are being used to fund a project called FunSize, a brand of children’s clothing dedicated to those with Dwarfism. The fashion world does not cater to those with Dwarfism, and that is one of the many things we are attempting to change. Awareness is everything, and you can find us spreading awareness and inclusion on our Instagram pages at @ Edens_Paradise_2016 and @ThreeTinyToddlers.

About the Author

Missy Mills is a mom first. She is also the owner of EdenOlivia.com, a website dedicated to little girls’ fashion in honor of her daughter. Missy’s hobbies include photography, writing, traveling, music and learning new things. She enjoys spending all of her free time with her daughter Eden Olivia and her husband Marlon.

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One Response to FunSize: Coming to Terms with My Daughter’s Achondroplasia Diagnosis

  1. Sad Nov 27, 2018 at 5:19 pm #

    They won’t diagnose mine. They’re taking forever. She’s the size of a one year old at 2. It’s awful to know she’ll never lead a normal life that tiny. Who knows if she’ll grow over 3 feet.

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