For most of Jessie’s years, we didn’t know any Angel parents. We were on our own to reinvent the wheel, navigating seizures, and sleep disturbances. Even though we heard a few words and phrases, upon learning of her Angleman diagnosis (when she was 13), I let go of the hope that Jess would talk in a traditional way. I wish I had someone that I could have shared with that understood.
Earlier this week, I met with the only local Angel mom I know. We met by chance at a dance. Ashley was a chaperone. As soon as she saw Jessie, she suspected she was an Angel because she has one too. She made it her mission to meet the rest of the family before Jess left that night. Even though our children are different ages and stages, this hasn’t prevented us from appreciating each other’s perspective. Unfortunately, we don’t get to visit that often, but when we do, we talk about anything and everything and of course, all things Angel.
We all don’t have the luxury of being with an Angelman mom/dad but we all can find a cyber one. I don’t know if this will work but with two other Angel parents, we have just started a new Facebook group, Angelman Syndrome-Find a Buddy. (for lack of better name). This is not another chat group. The sole purpose is to find another parent to connect to on a more personal level so we can reduce that feeling of being isolated.
Every day, I read a parent announce they just were given a diagnosis. Others feel isolated because their needs are different from families who have typical children. Even when we were part of playgroups, I ended up being with Jess while the other mom’s got to talk because Jess needed my support. Eventually, the divide grows wider as their children meet milestones at a much faster rate. For other parents with older children, their friends become empty nesters. Going out as couples became awkward because they don’t want your third wheel. Believe me, I understand wanting a child-free zone and the luxury of being with just adults, however, we rarely get to do that.
My new motto is, “If you are an Angelman parent and don’t know another Angelman parent, then get one”!
Why specifically an Angelman parent? Because firsthand experience means you don’t have to explain yourself. Sharing common interests is integral to any friendship and this opportunity could be the beginning of beautiful friendships!
Some of you may already have your Angel-supports in place but maybe you could be a mentor to a young family? Maybe you or someone you know was recently diagnosed and want to invite them to this group? Or maybe you want to be part of the “3 am” club because your kid has you up all night. This venue would allow you to find others “awake” at the same time.
There might be a better forum to use than FB in that it could be set up in a more efficient way, however, this is what we have to work with.
To begin, Join, Angelman Syndrome-Find a Buddy. Then add a brief post about yourself and what kind of support you would like to find. Maybe you are searching for one parent or maybe you want to form a group (of three or four), or maybe you want to find someone where you check in once a week to see how they are doing? (You might find that you are FB friends already so this would be an opportunity to get to know them better).These are just suggestions. It’s up to you to decide how to proceed.
I don’t know if this will work but I do know that Angelman parents are a very loving and supportive community. I’ve been blessed to make connections with families from around the world. Having friends in multiple time zones has been awesome!
This week, we will be tagging our friends to join this group. I’m afraid we may duplicate requests, if we do, please don’t be annoyed.
Since this is the launch, there should be a period of time for this group to build before connecting. I’d like to suggest that Buddy finding begins on September 15, 2018.
Either this will be a flash of brilliance or an epic fail. Even if only a few connections are made, I’ll consider this a success, however, it could be so much more. This will only work if you are willing to play. I hope you do!