Community
The Angelman Syndrome community is pretty unique. It’s a community you never knew existed, but once you’re in it, it’s a community that makes the hard days palatable. I was reminded of that this week when we met another Angelman family here in Michigan.
As always, since I didn’t ask for permission, I won’t include their names. However, this past Saturday we were able to meet a family that we had never met before. They have a little girl about a year younger than Maddie. We were able to just relax, eat some food, and have a few drinks.
It’s funny when you meet another Angelman family. I don’t know what it is, but it’s almost like you’ve known them for a long time. It’s probably because you’ve both been through one of the most difficult things in life. Everyone at the table has experienced their child being diagnosed. Everyone at the table has experienced the grief, the heartache, the pain.
It’s a shared experience. Even though each person goes through this experience differently, it’s still a shared experience. That’s why I love attending the yearly Angelman Syndrome Foundation Walk. I also cannot wait for the next Angelman Family Conference.
I have met so many families that have made a difference in my life through various Angelman Syndrome groups and events. Nicole and I have stayed in touch with some families from the Angelman Family Conference. Each person that comes into our social circle, has made a positive impact on our family. We can’t wait to reconnect with the families we have lost touch with.
Our shared community is small. There’s only a few families that have been touched by Angelman Syndrome. However, it is a community that includes some amazing people. What we lack in numbers, is made up for by the giving hearts of our members. I am a better person because I have met them. I hope that throughout my life, I can give back to the community what they have given to our family.
Reminder: I shared a post on my Facebook page about the upcoming Angelman Syndrome Foundation Walk. You can visit Maddie’s page here. We would love for you to join Team Maddie’s Joy at the walk on May 20th in Milan, Michigan. If you cannot make it, consider donating. The Angelman Syndrome Foundation has made a huge impact on our family, and many others throughout the country.
-Written by Adam Birchmeier
