A few weeks ago, my husband and I attended a conference and gala for the Foundation for Angelman Syndrome Theraputics (FAST). This was our first year attending since my son, Cole, was diagnosed with Angelman Syndrome back in June. It was completely amazing. We met so many people in the same situation as us. Just about every person in that room had a child, grandchild, niece, nephew, or someone they knew with Angelman Syndrome. It really made my husband and I feel comfortable knowing how much we all really did have in common, despite coming from all over the world. We felt like part of a community.
I think that we can all relate to that sense of community. Communities can involve anyone and anything. In the cloth diaper world, we have our own community. We go to websites, blogs, message boards, and groups to talk about all of our fluff! We can get answers to questions about which is the best laundry detergent or reach out for support when our 1 year olds start figuring out how to take off their diapers. You may have a local diaper swap in your area where you meet up with other parents who share the same love in cloth as you. This community makes us feel like we’re a part of something big.
These communities help us sort through our problems and are there to give us a “wahoo” when something goes right. I had never really looked at the people in my life this way until Cole was diagnosed and I was not sure where to go.
The day we were diagnosed, I updated my status on Facebook to announce the news. Not only did I receive an outpouring of support from my “friend” community, I also received contacts of people my friends knew who also had children with the same syndrome as Cole. I was able to get in touch with one of these contacts and she was able to put me into a group that has been a life line for us. We were able to finally meet a lot of these people in that online community when we attended the gala.
I must say that I feel very fortunate to be part of that Angelman Community. Even though the reason we’re a community isn’t ideal, it is a very special group of people. Each member of the community is there for each of our children. If you post a question on Facebook , within minutes there is a response. And then another. And another. Every person in our community cares about everyone else’s journey. We’re in this together. The chairperson of FAST mentioned this at the gala and it brought tears to my eyes.
I hope that everyone has a community they can turn to.
Jenn Kubicza is a mom of two little boys, one of whom has a neuro-genetic disorder called Angelman’s Syndrome and will require extended diapering.