When Zoey was first diagnosed with ulnar dysplasia, I did what almost all parents of this generation would do: I turned to the internet. I didn’t know anything about ulnar dysplasia, nothing about what to expect, how common it is, etc. I was hoping to find one or two good sources explaining the basics and then hopefully some blogs where other moms or people with ulnar dysplasia shared their stories. I wanted to feel like we weren’t alone. I wanted to know Zoey was going to be ok.
What I found was a whole lot of nothing. No blogs. No real medical descriptions that fit with what I saw in Zoey. Nothing. I felt more confused and alone than ever.
It was with this in mind that I made the conscious decision to share Zoey’s story. I knew there had to be other parents wondering about this diagnosis that had been handed to them along with very little other information. I wanted them to not have to feel as alone as I did. I posted the first part of Zoey’s story at the end of February, less than six months ago. Currently, if I Google “ulnar dysplasia,” my blog comes up as the very first suggested website. This takes my breath away. To know that there is so little out there for other parents of kids with ulnar dysplasia that this blog is the first resource they will find. Variations of search terms seeking information on this condition remain the number one way that new readers find this blog, by a very wide margin.
In the two and a half years since Zoey’s diagnosis, there has been a slight increase in the number of websites with information of ulnar dysplasia, although to find some of them you have to already know to try using terms like “ulnar clubhand” or “ulnar deficiency.” (Can I just state for the record that, as a mom, I HATE the term “clubhand”? It’s like you’re TRYING to make these kids feel like a freak show, more self-conscious that they already do. “Hi, I have a club instead of a hand, nice to meet you.” No. I HATE IT!). And yet, there sits my blog, at the top of Google’s rankings. Higher than Children’s Hospital Boston’s PDF of basic info.
The result of all this is that I have received comments and emails, here on this blog and on the Momsasaurus Facebook page, from other parents of children with ulnar dysplasia. Parents thanking me for writing, asking me about Zoey’s surgery, how it went, what to expect, whether it was worth it. Parents upset about the lack of information given to them by their child’s doctors, doctors who often admitted they had never seen anything like their baby. I have heard from quite a few moms. I have met with a wonderful mom who’s beautiful daughter had the same amazing surgeon as Zoey. To all those parents I want to say this: YOU are the reason I write. YOU are my inspiration and I am so grateful that I am able to reach you, to share what we are going through together. Thank YOU for reading our story. Thank YOU for letting us know we are not alone. Someday I will show Zoey this blog and say, “Look. There are so many others just like you. You don’t have to feel like you are the only one.”