An awareness can be done singlehandedly, but there is much to say about solidarity. Our family can be fully transparent about our challenges but having to have other Angelman families rallying behind the cause is much more impactful. I posted an announcement about our journey to the AS Community and few families who live along the planned route volunteered to help us. We left Colorado Springs very early to meet Stacey and Heather’s family in Henderson, a suburb NE of Denver.
The Davis family were so gracious to host the meeting and welcomed us to their immaculate abode. For several hours we’ve exchanged the joys and the let’s not mentioned stories of raising an Angelman children. Clay and Stacey are a lot like Mike and I. We are watching them tag teaming to make sure that their angel Ty, who is 18yrs old, tall and handsome, with deletion+ gnome type, who seemed nervous that unfamiliar faces was at his front door, and as we entered their home, this good looking kid staring at us intently, figuring our every move, a tad anxious and his anxiety was making him feel not at his best. Mom Stacey came rushing and reassured him, “Ty, it is ok, they are friends, and they came to visit you. In a calming way she lead him to his comfort zone, armed with his iPad/talker, his chair and TV. As we were all visiting, Ty loudly heard his name, smiling, waving at us and he started coming back to the kitchen. As he stayed focus and engaging, he started to act like he wasn’t feeling too well to continue visiting. You see, Ty and Matt, despite their age gap, they share the same bond of finding their places to be comfortable in a situation seemed normal to typical children. They can’t help it … if they are overly stimulated and new things are unfolding in front of them, they try to cope the best they can. For us, if we ever put Matt to the same scenario, he would easily be screaming, hitting, and would be gagging due to anxiety.
Heather, who lives 10 minutes away from the Davises brought her Angel daughter Quinn, who is 5 years old, deletion + gnome, who was sporting a cute pink tutu. As we were visiting, Quinn is eating her special foods because she is participating in an Angelman Research. Socially, she reminds me a lot of Matthew … very happy and smiling all the time.
Our informal meeting, seemed like a social get together we’ve done so many times. It felt very homey!! Our discussion centered on seizures, school inclusion programs, relationships of Angels and their siblings, and friendships with others are like? Personally, I’ve asked way too much questions just because Matthew is 6 while Ty would have had lots of experience. I can’t help but gravitate towards others who have walked the extra miles.
No matter how many hills, valleys and mountains this Angelman Syndrome throws in front of our family, talking to other families have brought so much hope that “this journey” is never one were walking alone.
