Celebrating the 25th ASF Walk
This past Saturday Team Maddie’s Joy participated in our third Angelman Syndrome Foundation Michigan Walk. We set a modest goal to raise $500 and we almost doubled our goal, raising $915. Thank you to all of our family and friends who donated to Team Maddie’s Joy this year. This was the ASF’s 25th Walk, our third Michigan walk, and also the first walk without our daughter.
The first ever Angelman event we attended was a walk. To be honest, when we connected to the ASF, we were terrified. We had never heard of Angelman Syndrome. We didn’t know how our daughter’s journey was going to play out. We needed to lean on experts and families that had gone down the path before us. Most importantly, we needed hope.
That’s what the ASF Walk symbolizes to me. Our greater Angelman community is a hodgepodge of imperfect people who create an atmosphere of understanding, of love, and of course, a whole bunch of chaos. It’s a community that I am so grateful that I have found, and it’s a community that I will never leave.
Leading up to the walk, I haven’t been in the greatest of head spaces. I am dealing with the loss of Maddie. I am also so very excited that Nicole and I are expecting our 2nd child. I am also sad that our child won’t be able to experience all of the love and joy that Maddie is and was. Ultimately, I miss my child.
Nonetheless, I was excited to reconnect with families that I hadn’t seen in a while. Sure enough, one of the first Angelman children that I encountered, left a scratch right below my eye. She even drew blood. I suppose my Angelman parenting reflexes have gotten a little rusty over these past 8 and a half months.
I did have to walk away from this interaction fairly quickly. I loved it, but it also hurt. I couldn’t contain the tears that started to flow. I saw so much of my child in that smile. I saw the things Maddie would never accomplish. I felt the explosion of love and excitement that was so familiar with my child. I’m glad I wore sunglasses on Saturday, that wasn’t the first or the last interaction that left tears in my eyes.
Nicole and I were so humbled at the ways Madelynn was honored on Saturday. She still had her yard sign along the walk route. We were honored to cut the ribbon to kick off the official walk. We felt the love from other Angelman families. We felt the love from our team members who showed up to support us.
We now have a new mission. We will continue to raise money and awareness for the Angelman Syndrome Foundation. We will continue to raise money to support families and individuals who live with Angelman Syndrome. We will continue to raise money to continue the research and therapeutic supports to make each angel’s life easier. We will continue to support each and every single family that needs it. We will continue to love all of you in the community unconditionally. The Angelman community is stuck with us.
We cannot wait to attend next year’s ASF Michigan Walk, and we hope that our team continues to grow. In the meantime, we will see our greater ASF family at this summer’s family conference. You may have to excuse my tears, but I am happy to have met all of you.
-Written by Adam Birchmeier
