It's not everyday you meet someone with Apert Syndrome. In fact, it'll typically only be a once-a-year occurrence, that being the annual CCA Kids Family Retreat where scores of craniofacial families come together to hang out, share stories and enjoy a different city with new friends and old.
Recently, however, I stumbled across a family blog of a child with Aperts in our area. Every now and then I google "apert syndrome" to see what new information comes up - research, new medical information, families. When I found this family's blog, I realized that not only were they in my area, they were actually staying at the local Children's hospital recovering from a recent surgery. I immediately wanted to reach out to them.
I found the mother's email address on the blog and shot her a quick note. Realizing it might seem like spam to get a random email from an unfamiliar email address, I was sure to put "mom of boy with Apert Syndrome" in the subject like to catch her attention. We exchanged a few emails, then phone calls, then made plans to meet at the hospital. I couldn't wait!
When we arrived at the hospital, we met this sweet little boy who was full of life. Even after undergoing a critical head surgery, and while dragging an antibiotic IV bag, he shuffled around his room from toy to toy as if nothing was wrong. Once again a testament to the resilience of children.
After chatting a bit about his surgery, I asked the mom how many other families she had met that had kids with craniofacial conditions. Her son had recently turned 2, so I assumed she had probably had contact with many others, just as we had at that point in Aiden's life. I was completely stunned when she told me I was the first and only.
She seemed to have a very good handle on all things related to her son's medical care, and having met her mom and best friend while at the hospital, I knew she had a lot of support nearby, but I was still surprised that 2 years into her son's journey she had never had the support of someone who knew exactly what she was going through. Maybe she didn't want it. Maybe she had never even thought to look. But it was a great feeling to be there for her at such a crucial time. I felt like the timing was just right and quite possibly "meant to be".
I shared with her information about CCA and talked to her about the recent retreat in Louisville. And although she didn't seem too interested in learning more, I figured she had much more important things on her mind as her son recovered. Hopefully this meeting will spark a friendship at the very least, and perhaps open her up to seeking out support from other craniofacial families in the future.