At the pool yesterday I talked with a father who was swimming with his disabled son. While I’d said ‘Hi’ many times over the years, this was the first time we had a conversation. He asked me if Edward was still living at home. I smiled and told him that he was, and how well things were going. When I asked about his son, Kyle, he said that they made the decision to move him into a supported living arrangement 12 years ago—at about Edward’s age.
There was one thing the dad said that’s stuck with me; “We’d done our job.” He was so matter of fact about the decision. And it left me quite unsettled.
Once a year, or so, Fran and I talk about whether we’re doing the right thing for Edward, keeping him at home. Who could ever know and love him like we do? After a bit of back and forth we quickly come to, what feels like a foregone conclusion; of course he should be living with us. Then, holding up a thumb and a forefinger to Edward, I ask, “Do you want to live with mom and dad… yes or no?” When Edward grabs my thumb, I breathe a sigh of relief.
The first time I asked this question I was petrified. Even though I knew that he mostly defaults to the positive (choosing the thumb) on any questions we ask him, posing it felt so risky. What would we do without him?
It’s that feeling that continues to unsettle me. Do we want him to be with us more than we want what’s best for him?
I’ve always imagined Fran and I caring for Edward for the rest of our lives. Maybe he’d care for us a bit… lifting heavy things, et al, as we aged. Then, knowing the Down syndrome mortality charts, I figured we’d all die around the same time. Of course, I have no control over any of this. And yes, we know that Edward’s siblings and their partners would see to his care if he outlived us.
But still, once a year or so, I wonder.
With all of the change of this past year—engaging in this allthings( ) vocational experiment—I’ve come to realize that I do need to make more time for Edward. To be honest, right now I feel that I’d be willing to invest all of my remaining energies in his care. That’s not needed now (he has a great day program), but I’d do it if it was.
So, for now, it seems best to continue with the status quo.
I guess we’ll just keep struggling with the question. What makes it so hard to weigh these things is the scope of Edward’s disability—he’s so cognitively young. After settling him into bed last night, with him holding and shaking a Mickey Mouse doll, and with his Woody doll tucked in beside him, alongside a Beauty and the Beast book, I said to Fran, “He’s like a five-year-old.” “Not even,” she responded. And then, a few minutes later, we’d be praying for our son.
Through all of this I keep wondering how God lets us go. If Fran and I only had a spirit that we could send with Edward, to keep and guide his life, that might change the calculus.
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