Our Community

When we got Maddie’s diagnosis, it was a lonely feeling. There was a pit in my stomach. It just sat there. I remember it very vividly as Nicole and I sat on the couch. We didn’t say much to each other. We just held hands and watched Maddie play on the floor. This was probably the loneliest I’ve ever felt.

When you get a diagnosis, especially one as rare as Angelman Syndrome, you feel isolated. Your brain can do amazing things, both good and bad. I just felt like we were on an island. We were about to embark on a journey that no one else in our lives had ever gone down.

That’s why I started this blog. I figured that I did not want to keep my feelings inside of me, and that I could write to express myself. I thought that maybe 10 people would read about our journey week in and week out.

Little did I know, on December 3rd 2020, a community of support formed around our family. This community carries us through our low points and celebrates alongside us. I hope that doesn’t offend anyone. We have amazing friends and family. We knew this at the time of our diagnosis. Like I said, the brain is an amazing thing. The shock of the diagnosis just played tricks on me.

I just hope you all know how much you mean to our family. For example, when I posted about the shirt that Nicole made. I was blown away at the response. There were so many people who reached out and asked if they could have one too. The amount of people who wanted to show their support for our little one is amazing.

Your comments, messages, texts, and phone calls lift us up each and every single week. The eternal friendships we’ve forged inside of the Angelman Community has been a blessing as well. I wish I could go back in time and talk some sense into myself. I wish I could tell my former self how enriching this journey would become. I wish I could tell myself how many people will catch you if you fall. I hope you know how much Nicole and I appreciate and love you all.

-Written by Adam Birchmeier