I can not believe I am saying this out loud, or rather writing it for all to see, but here we go.
I want to start a non-profit.
Am I qualified to do so? I have no idea!
Am I ready for all the technical stuff that comes along with it? Probably not.
But what I do know is that ever since our daughter Sutton was born, this dream has been in my heart. When Sutton surprised us and was diagnosed with achondroplasia I had so many feelings – fear, anger, guilt, dread, joy, happiness, and curiosity just to name a few. When you deal with something so unexpected that affects your child and their life so much, I think that is pretty normal.
One distinct thing I remember is feeling so overwhelmed. What was going to happen now? I wanted to see kids and adults who were thriving. I wanted to hear someone tell me that everything was going to be okay. I wanted someone to let me know that while what we are dealing with won’t be easy but it would be worth it.
I searched the internet and hashtags for people and kids. There was some information out there, but not nearly as much as my heart desired. We had been ‘inducted’ into this new community, and I wanted to feel invited and welcome. I had reached out to some people with no response back and that hurt my mama heart too.
This is when the idea of a non-profit was born.
My dream is two fold.
First, I want to create a “welcome box” for families facing a new diagnosis of achondroplasia. I want it to have a brief introduction of our family, the book that I am currently writing which tells our story, two or three handouts with helpful information (think gear, clothing, recommendations, doctors to see, etc.) and a little happy for the mom and the baby. Gift giving is my love language so blessing someone else with just a little something to brighten their day during such a difficult time would really make my heart smile!
The second part of this dream is to be able to provide these families with a care package during the inevitable surgeries that they will face throughout this diagnosis. Surgery can be pretty worrisome for a parent, no matter how small or large, and I want them to know that there are many other families who have faced similar situations who are there for them, praying for them.
The Bond of Friendship
My main goal is to create a bond of friendship for these families to know that they can come to us and lay down their feelings (even when they are not pretty) and not be judged. For me, talking it out has helped me process it, and I wish I would have known more people who were walking this journey before us to share my feelings with.
Don’t get me wrong. We have met some incredible people along our journey but it was much later that I would have liked. When I met Missy and her daughter Eden, it was a game changer. To this day, she truly is one of my best friends! She can relate to the things I am thinking, feeling, and fearing, and she reassures me or kicks me in the butt when I need it.
This is also why I am an open book when it comes to Sutton’s life. I want to bring normalcy to dwarfism. I want her to be proud of who she is. I want her to know that even though she isn’t your ‘typical’ baby that is a-okay with us. When people search those hashtags looking for research and comfort, I want them to see her smiling, happy, silly face and know that it will all be okay.