One of my goals on this family vacation was to spend time with my nephew Jace. I have four nephews and nieces: The two girls are 18 months old, and my other nephew, Andrew, is 7. Andrew’s mother is my sister Morgan, who also has Friedreich’s ataxia, so he’s used to being around people in wheelchairs. Jace is the son of my sister Mckenzie and her husband, neither of whom use a wheelchair. He is over 2 years old and becoming more aware of his world. I hope to be a part of it.
On the morning of the first full day of my trip, I strolled around the grounds at the Beaches resort. My belly full of French toast and fresh fruit, I meandered through the Italian Village, where the yellow stucco walls enhanced the picturesque setting.
I rounded a corner and noticed a small group of people gathered around the resort’s mascot: a scruffy pink Muppet wearing a tutu, wings, and a tiara and carrying a fairy wand. (I later learned this was Abby Cadabby from Sesame Street). The mascot came over and hugged me. Getting tackled by a pink monster could have been a terrifying experience, but dang it, she was cute and sweet.
“I bet Jace will love these characters,” Charleen, my personal care attendant, said. I nodded and grinned, hoping that Jace and I could bond over watching Sesame Street performances at the resort.
I know I have a difficult time bonding with Jace. He’s not accustomed to being around people in wheelchairs, and besides, he is a rambunctious boy who likes to explore. I can’t keep up with him and I’m afraid of losing my chance to matter to him.
A couple of days passed, and I discovered that my sister and her husband wanted to dine at the resort’s sushi restaurant. The place doesn’t allow kids, so Charleen and I offered to watch Jace, so they could go on a date.
Jace is small enough to ride on the wheelie bars on the back of my wheelchair. He jumped on, asking Charlene to push us “faster,” shouting, “Whee!” and “Beep beep!”
Our first stop was the Xbox lounge. I went to a screen with a racing game and played it (I was terrible; video games are hard now). We gave Jace a controller from an available screen and set him in front of a racing game, so he thought he was playing it. He shouted and giggled, and we both had a great time.
After about 30 minutes, he lost interest, so we went next door to an ice cream parlor. We bought Jace a small cup of strawberry ice cream. I knew that he was learning about sharing, so I asked him for a taste, expecting him to say no. But he reached over and let me have a bite.
“How is it?” Charleen asked me.
“Really good,” I said, impressed. “It tastes homemade.”
While we were talking, Jace got up from his seat and went to the bar to place an order. “Jace,” Charleen called, “you still have a lot of ice cream left.”
Undeterred, Jace asked — in his 2-year-old’s voice — for another cup of ice cream. The lady who took his order looked at me, and I shrugged and mouthed “only a little bit.” I wanted him to have fun with Uncle Matt. If he wanted two bowls of ice cream, he could have them!
Jace came back to the table with his new bowl of ice cream. He pushed the new bowl across to me, as if it were no big deal, and returned to his half-eaten bowl of strawberry ice cream.
He had gotten it for me.
It was the best darn ice cream I’ve ever had.
Afterward, we dropped him off at my sister’s. I don’t know if the night meant anything to him, but it did to me. In a small way, I felt I was becoming a part of my nephew’s life. We said goodnight, and though the sun had set hours earlier, in my memory, it will always be a sunny day.
Friedreich’s Ataxia 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 another 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.
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