2 different reactions follow an unexpected talk about feeding tubes
While my gene-positive wife and daughter were OK about them, I became sad
Last year, a chat about a Halloween decoration led to a conversation about Huntington’s disease (HD).
It all began when my wife, Jill, picked up an item at the home of our daughter, Alexus, when we visited her in Boston. It was a long, hollow tube — a prop for a Halloween decoration, Alexus explained. Jill innocently asked Alexus what the tube reminded her of.
Our daughter’s reaction and words made me stop in my ADHD tracks.
“I thought the same thing, Mom,” she said. “It looks like a feeding tube.”
As Huntington’s progresses, it can cause trouble chewing, swallowing, and eating food, which causes some who have it to need a feeding tube. Also known as a gastrostomy tube, this G-tube is inserted in the body to bring nutrition directly to their stomachs. It’s one way doctors can make sure these people get the fluids and calories they need.
The words “feeding tube” were odd for me to hear out loud. My first thought was, why does my young adult daughter understand what one of them looks like? Then, a heartbeat later, my shoulders sagged when the answer came to me.
As heart-wrenching as it was for me to think about it – both Jill and Alexus are also gene-positive with HD – for them, it was as simple as a conversation about the weather.
Comfort from an unexpected source
Jill noticed my shoulders sagging and the sad look in my eyes as I realized what may be in store for them one day, and she looked at me with compassion.
“Oh, honey,” she said. “Don’t worry about that now. My dad had HD for years before he needed a feeding tube.”
I was still heartbroken by the thought, so Jill took the opportunity to share a story to make me feel better.
“When my dad had his feeding tube put in,” she said, “the surgeon didn’t even come out to talk with my mom about the surgery. Then they discharged him with very little information about how and what to give him.”
Alexus added, “They also left out … how often [and how] to clean the site where it was inserted and what to do with the tube itself.”
I stood there trying to understand how any of that story was making the thought of a feeding tube better.
Alexus said, “Mom and Nana were lucky because they had worked with kids who had feeding tubes before my grandad got one, so they at least had some knowledge about feeding tubes.”
It became obvious they were prepared for possible futures with feeding tubes because of their experiences. As sad and difficult as I found it to think about a day when the people I love the most would have to deal with these tools, I realized that I needed to pull it together. If Jill and Alexus could handle that thought without breaking down, I could, too.
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