The Picture-perfect Snow Day for My Angel
Over the years, I’ve learned many lessons from raising a child with Angelman syndrome. However, I never thought there would be a lesson from a snow day.
Although snow is a magical thing for many people, that is not the case for my 11-year-old Angel, Juliana. The big takeaway from our adventures is that making a snow angel is fun, but taking my Angel out in the snow is not.
‘Let It Snow’
We live in the Atlanta area, and snow is a rare thing here in the South. I can almost count the number of times it has snowed in the years since Juliana was born. As a matter of fact, the first time was when she was about 3 days old. My husband and I braved the white-covered roads and went to the hospital to meet the beautiful baby girl we would foster. Fast-forward 11 years, and we face a different type of snow adventure.
One of our largest snowfalls on record was in 2018. I bundled both of my girls up to get them outside for a fun day. At 6 years old, my daughter Jessa could hardly contain her excitement. Juliana, then 7, seemed curious, but not fazed. When we got outside, I wondered how Juliana would react to the temperature.
I figured that she would be so excited by all of the white flurries that she wouldn’t mind the cold. I even had the bright idea to put her inside of the girls’ wagon so she wouldn’t slide around on the ice. Surely, that would help.
Not quite a Rockwell scene
I couldn’t have been more wrong. Juliana screamed her head off. After a few minutes of trying to get her to settle down, she and I went back inside. We got unbundled and warm. From the window, I watched my husband and Jessa play in the snow.
For a fleeting moment, I felt frustrated. Why couldn’t we just have a normal snow day? Then, I realized that Juliana was content and back to herself. She was calm and happy again, and I realized that a typical snow day wouldn’t be in her future.
Jessa went outside several more times that day. She even went sledding down a hill with our neighbors. I tried taking Juliana out one more time, but even in the safety of the wagon, I could see that she wasn’t enjoying herself.
I took her back inside and she hasn’t ventured out in the snow again since. While it might be fun for others, the sensory issues and other changes Juliana experiences just don’t make her happy.
From the inside out
When we first started staying inside, I felt guilty about all of the fun she was missing. I wanted her to experience the joy of a snow day like everyone else. But I was the one missing something. I needed to see the day from Juliana’s perspective.
Yes, there is fluffy stuff floating around outside. But from Juliana’s point of view, things are very different. It’s colder than usual. Everything is white and a little unclear. Steps and sidewalks seem to have disappeared. The ground slides when you walk. With a sensory lens, snow isn’t that great. Sometimes special days need modifications, and I’ve discovered that even a snow day needs tweaking.
Brimming with excitement, Jessa enjoys a recent snow day outside. (Photo by Sabrina L. Johnson)
When it snowed a couple weeks ago, Jessa ventured outside to enjoy it. Juliana stayed inside for her own version of a snow day. We didn’t do any inclusive winter activities, and she didn’t care. When Jessa brought her some snow to play with inside, she didn’t bother looking at it. This confirmed that I made the right choice.
With her favorite doll, iPad, and toys, Juliana enjoys a recent snow day inside. (Photo by Sabrina L. Johnson)
It feels good to make peace with the differences in our family — even regarding something small like snow. Being inside or outside is just a matter of geography.
The end result is still fun.
Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.
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