Walk With Me
Note: A special thanks to Rose Timbers and the team of volunteers who coordinated another successful ASF Walk for the state of Michigan. Also at the bottom of this blog, I have included links to the companies and organizations who donated to the silent auction baskets for Team Maddie’s Joy.
The annual ASF Walk has come and gone. While we didn’t get rain this year, it was a little cooler than I like. All of that doesn’t matter, because we were once again reunited with our Angelman family.
The 2023 walk was the second year for Team Maddie’s Joy. Just like the year before, the day went by way too quickly. The day seems to be a balancing act for me. I try to reconnect with families that I already know, and I try to meet new families as well. Then I also try to show my love and thanks to the team members who specifically show up for our little bundle of joy. However the most important job, is keeping tabs on my child.
This as you can probably tell, is an imperfect science. Our Maddie came home with me, so I guess I accomplished one goal. I really hope that the team members that showed up on behalf of Team Maddie’s Joy, truly know how much we appreciate their support. We hope to see even more of you next year. As for the families of other Angelman individuals, if I did not meet you, I hope to do so in the years to come.
The Angelman walk is more important than many realize. Being a father of a child with Angelman Syndrome can be very scary. For instance, Maddie had a breakthrough seizure on Friday. I was home alone with Maddie. I had to watch my daughter stare off into the distance, all the while I also had to watch my phone to time how long the seizure lasted. Three minutes later my little girl came back. For the rest of the night my heart sank at every little movement.
Many people at the walk have experienced that with their child, or with their loved one. I’m not alone. They’ve experienced the sleepless nights, the daily doses of medication, the fights with insurance companies, the pure exhaustion, and the daily fight to put one foot in front of the other. Many people at the walk have also experienced the love and joy that come from our angels. Day in and day out they get to see the determination of our children. They get to experience the wins that seem small to others, but are oh so big to our children.
The walk also reminds me that there is a team of people behind me. The walk reminds me that when things seem too much to handle, that I have a great support system that will step in if I ask. I’m reminded that I am never alone. Even though some days seem hard, I know that there is someone who is a phone call away.
So for the 2024 walk, I will try again to meet more families. I will try and express my appreciation for my friends and families. I will hopefully not lose track of my daughter. Most of all, I will just be eternally grateful to be apart of a perfectly imperfect community of people. Even if I do not know you, I’m only one call away.
This is a list of businesses/organizations that helped create our silent auction baskets. I cannot begin to express how much we appreciate each and every one of them. If you could please keep them in mind when making a purchase and/or thank them.
Simply Glazed Gourmet Popcorn: The owner of Simply Glazed, Christine Cregg, didn’t even know our family. Once she heard about Maddie, she stepped in and donated.
Compass Health and Wellness: A health coaching service out of Nunica that offers virtual sessions as well as in person consultations as well.
Laura R. Holmes: A local author and travel blogger who’s motto is “Regular people go on adventures too.”
Complete Restoration and Cleaning Services: Go from wet today to dry tomorrow. They are located in Muskegon, Michigan and service the west side of Michigan.
West Michigan Symphony: Their mission is to teach people that classical music is for everyone.
Captain Andy Rush of the Muskegon Police Department: Our local police department works hard to connect with the community. For years now, the Muskegon police department has had a community based policing model. They even mow vacant lots here in the City of Muskegon as well as have a social worker on staff to help connect citizens to resources.
-Written by Adam Birchmeier
