What Risks Are We Willing to Take?
“What if Todd had aspirated while you were on your spring break trip?” someone asked me.
When I left with our kids for a couple days over spring break this year, I was aware that Todd was more at risk than when I’m home. I was leaving him in good hands with his sister, my mother, and other caregivers, but they don’t have the experience that I have in keeping Todd’s lungs clear.
It was a risk Todd and I willingly took so that I could do something fun with our kids. As our children age, I’m aware that our time with them is also limited. We only have two more spring breaks before our daughter graduates from high school.
We take a risk every morning I drive the kids to school. I check on Todd before I leave to make sure he’s comfortable in bed, but I know he could have problems while I’m gone for the half-hour round-trip. He could get a buildup of mucus that he wouldn’t be able to expel on his own. We want our children to go to their particular school for social and academic reasons, so they need to be dropped off. It’s a risk we take.
I take a risk when I go mountain biking with our son. When I head out on the trails, I make sure my mom is available for Todd to call for help if needed, either at home next door or at work less than 15 minutes away. I don’t leave Todd on days he’s sick or when his lungs are congested.
I take a risk when I leave him to go grocery shopping. There have been times that I’ve had to hurry home to help him.
And today as I write this, I took a risk when the kids and I went to the beach. Todd was at his computer with access to his phone. I texted him a picture of the kids playing on the beach, and he texted me back a similar picture from 10 years ago almost to the day.
It would be safer for him if he had someone with him all the time, but that brings up another quality of life issue: He doesn’t actually want someone with him all the time. He’s an introvert, and he needs to have some time alone.
Every couple dealing with ALS and disability has to navigate these and other issues to find their own comfort level with risk.
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