From The Heart
When I began writing this blog, I knew that some of the things that I wrote about might be hard for people to understand–that maybe I would be judged one way or another. However, I promised myself that I would always be authentic and write from the heart, no matter what.
In January of 2022, I wrote about a very real, very big decision Evan and I were faced with. A year prior, the FDA approved the first ever treatment for Achondroplasia. This treatment comes in the form of an injection, administered at home, by us, every single day.
I’ve learned that there are a broad range of opinions on this topic, some held quietly between parents who advocate privately for their children, and some expressed openly and passionately on social media, in articles and even in short films.
After more conversations, questions and thoughts then you could ever imagine, our family began this very long journey.
There are a lot of things that scare me in life. We drive cars, board airplanes, fall in love, start new jobs. We send our kids on adventures and hope they’ll return unscathed. We make decisions to have babies, understanding that those decisions come with risks.
I always share that bringing Mira into this world has taught us so much. Many of those lessons smacked us in the face even before she was born. Perhaps the most important one was to not let fear and hesitation guide the choices in our lives. After careful consideration, and support from our family and our medical team, this was a risk that we were wholeheartedly willing to take.
The first week of injections were a nightmare. Fear, pain, exhaustion, tears. Not to mention all of Mira’s emotions!
Evan and I are happy and relieved to report that 1 year later, our brave girl is doing incredibly well with our new routine. She has endured 365 days of injections into her arms and thighs, without so much as a wince. We are astounded by her determination, spirit, and maturity.
If asked why she is getting a shot she proudly answers, “this medicine is helping my bones grow.”
At Mira’s annual visit with her medical team, we learned what we already knew. She has gotten stronger and grown taller. Her x-rays have improved, and she is making strides with her independence and her confidence.
Mira knows that her dwarfism is one of the many things that make up the amazing person that she is, and we would never, ever want to change that. Mira also knows that we want her to have as many opportunities as possible to live a happy, healthy, fulfilling life.
We can’t change the challenges that she will face or promise that she won’t have moments of feeling different from others. However, we are grateful to be on the forefront of this opportunity and look forward to watching our girl grow…in more ways than one.
