The Moment With My Son With Angelman Syndrome I'll Never Forget
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Before my son was diagnosed with Angelman syndrome, I never really gave much thought to nonverbal forms of communication. Sean’s smile lights up a room and competes with the summer sky. At 19 years old, I still call him “Sunshine.” His smile reassures me that everything will be all right.
Even in the most trying of times with my son’s health and disabilities, there are always sweet moments woven in the midst. Time freezes still and it’s just us. Our eyes connect and all of the other distractions around us are unseen and unheard. He speaks to me with his eyes and runs to me with his smile.
I’ll never forget the day when Sean came home from school on the bus. I waited outside for him as I always did, but something was different this time. The door to the wheelchair lift did not open at the back of the bus. Ever since he started school at age 2, he was either carried onto the bus and placed in a car seat, or he rode in his wheelchair. His bus driver opened the door in the front and told me that my son did not sit in his wheelchair on the ride home. He was going to walk down the bus steps with help.
This was a huge milestone, yet I don’t recall many details about it. He was in elementary school. I only know his age at the time was 9 years because of the date on the photo. What I remember most is the way I felt in that moment. My son and I locked eyes, and he knew how excited and proud I was. No words needed. I surprised myself by how emotional I became. It was such a simple thing, yet it wasn’t. It was huge.
I watched through my tears as the bus attendant and bus driver assisted him down the steps. I have no idea how long it took or if we held up traffic around us. I remember the bus driver crying too.
As soon as we were inside the house, I shared the moment with Sean’s three younger siblings. I wanted to remember the feeling forever. It was sweet. It was beautiful. It was cherished. It was a gift.
I knew at the time to savor the moment because the next one isn’t guaranteed. I don’t even remember if Sean used those bus steps again the next day. If he did, it wasn’t long before he was back in his wheelchair because seizures once again robbed him of more opportunities. The next few years were some of the most difficult of his life. But this was never about the details. It’s about us sharing a sweet moment together and remembering how it felt when our eyes locked.
At age 19, Sean’s seizures are very well controlled. He doesn’t use a wheelchair at all during the school day, and he routinely uses the bus steps. And the way he looks at me, like nothing else matters, is still the sweetest thing I ever did see.