Take my hand today
Escape through thick confusion
Freedom in the trees
Saturday morning we put on our tie dye AS shirts, loaded in the car, and drove for an hour to Buffalo for the National Angelman Syndrome Walk. It was a nice morning, a bit brisk, but perfect for walking. Pulling into the park where the walk was held, I could feel myself beginning to feel uneasy… I couldn’t separate “pregnancy” from anxiety, but knew I wasn’t feeling like myself. We followed the blue signs to the cabin where the other families were waiting for the walk to start. We parked, unloaded, and made our way to the registration table to check in and get our goodie bags. I grabbed Noah’s hand as we made our way into the cramped, loud cabin filled with people. My stomach dropped, my fight or flight response kicked in and I grabbed Noah even tighter. I tried to not make eye contact with anybody and made a beeline for the fresh fruit on the food table. I loaded up a plate of watermelon and strawberries for Noey and me to share… not because I was hungry, but I was terrified of actually interacting with anyone there. The deafening outbursts and busyness of the other participants caused me to want to crawl into a fetal position on the wooden park bench inside that seemingly tiny cabin.
Tap tap on my shoulder, “Hi, this is Caleb, he’s 7, who is this?” I swallowed my strawberry whole and turned to smile at the sweetest face. “Hi Caleb, this is Noah, he’s 3” I quickly said. My heart sank and then melted. I wanted to clutch my precious boy and escape into the trees. Caleb had the softest smile, the fairest complexion, and the most gentle demeanor. I saw my son in those calming eyes, in his innocent mannerisms, and how he grabbed his grandma’s arm and pulled her to the food table.
I wasn’t sure how I continued to sit in one place, all I could think to do was turn and run.
Last year was our first experience with the AS walk and it was tough for us both. We don’t have the opportunity to run into many families of kids with AS in our daily lives. It’s a strange reality to be in a room with 8 or more children all diagnosed with different forms of AS. It’s frightening to see the reality of what Angelman Syndrome truly is and how it deeply affects each person diagnosed (not to mention their families).
In Rochester, I am comfortable with AS. We have found what works for us, how to provide Noah with what he needs to succeed and how to separate ourselves from the reality of the diagnosis (which I believe is healthy). We aren’t bombarded with the reality of AS in our daily lives. I find safety in those numbers. In the Angelman community, I am not comfortable. Initially, it saddened me that I hadn’t “moved forward” from the walk last year. I was still stuck in the fear of “what-ifs” and seeing other children more seriously affected deeply impacted me.
We put Noah in the stroller and headed down the road for our walk along with the rest of the families. It was encouraging to see how much support our children have in each of their situations and families. I was brought back to thoughts of my beloved mother and sisters (and nieces and nephews) who were supporting our little boy by walking in Kansas at the AS walk that was held there at the same time. I experienced a warmth that rushed over my body and a calmness that filled my heart.
We made it, we walked, we participated.
A heartfelt thank you to my dear mother and sisters, Chelsea, Whitney, and Maci (Gentry, Ace, Chloe, and Carter) for supporting Noah this past weekend (and everyday of his precious life).