A 6-year-old’s childhood innocence confronts his great-uncle’s ALS
Curiosity and empathy in response to computer aids and hands that 'don't work'
We had a young visitor this past weekend who met my husband’s disability with frank curiosity and innocent sweetness.
The guest, Todd’s 6-year-old great-nephew, watched with interest as I set up his Uncle Todd at the computer.
“What is that for?” he asked as I put Todd’s sip-and-puff mouse clicker around his neck.
“That’s what Uncle Todd uses to click the mouse on his computer.”
I put nasal pillows up to Todd’s nose and pulled an elastic strap behind his head.
“What’s that for?”
“That helps Uncle Todd breathe.”
I put Todd’s visor on his head and preemptively explained that the reflective dot on the brim lets his great-uncle move the mouse.
At dinner time, I served a plate of spaghetti to the boy, who was seated at the dining room table, and I put a plate of spaghetti with garlic bread, snap peas, and cucumbers on Todd’s adjacent, counter-height folding table.
“Why does he eat there?” the boy asked.
“Because Uncle Todd’s wheelchair doesn’t fit under the dining room table,” I said.
A show of empathy
Without saying another word, the little boy took his plate and set it on the narrow folding table across from Todd’s plate, and he slid his dining room chair over and sat down with his eyes barely clearing the table.
Todd asked the boy’s grandmother to get a counter-height stool for him to sit on. He then asked me to put his feet off to the sides and the foot rest of his wheelchair up so he could pull close to the table without bumping into his great-nephew’s shins. He tapped the buttons of his head array, and the wheelchair beeped in response. He pulled close to the table and took the chair out of drive.
“How will you eat?” the boy asked.
“Aunt Kristin will feed me.”
I put a kitchen towel over Todd’s chest to service as a bib, and I placed another counter-height stool next to him.
“How do you move?” the boy asked his great-uncle.
“I press these buttons with my head,” Todd said, tapping the buttons of his head array.
“Why don’t you use your hands?”
“They don’t work.”
“Why?”
“I have a disease,” Todd said. He didn’t bother to name it.
“Will you be able to use your hands again?” the boy asked with concern.
“No.” Todd said matter-of-factly.
“That’s horrible,” the boy said, studying his great-uncle’s face.
The boy shared a story of his neighbor friend who had a cast on her broken arm. The arm healed, and the girl could use it again.
Todd smiled. “The one thing I won’t lose with this disease is one of the most important things a husband can do. Do you know what that is?” he asked.
The boy shook his head.
“I’ll always be able to listen to my wife,” Todd said.
Todd’s calm acceptance of his disability seemed to soothe our young visitor, and the whole exchange warmed my heart.
Note: ALS News Today 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 ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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