November 8, 2024
Facing Forever: The Hardest Talks About Our Son’s Future
Parents of kids with disabilities…
What is the most difficult, yet important conversation you’ve had around your child’s needs? Maybe it was around medications. Or the decision to have more children. Or to let go of education and focus on daily living skills.
For my husband and I, it was around forever. It was grappling with the thought that our son will live on this earth without us.
It took us years to be able to sit down and rationally speak about it. In the beginning, I’d bring it up. We’d fight.
Months later, he’d bring it up after a few drinks, and I’d cry. We could never get on the same page at the same time.
I think it had to do with hope and an unknown future. Some days it felt negative. Some days it felt hopeful. Some days we felt defeated. Some days we just wanted to believe we wouldn’t need to have these discussions.
Finally, we reached an okay place. We could talk about retirement and adulthood. We could talk about forever.
Today, our son is 13. The once unknown picture is slowly coming into focus.
Three rocking chairs on a porch.
A world wide tour of train depots.
A group home of some sort. With two brothers and a sister being hopefully very involved.
It’s still hard. But we do it because the conversations need to happen. Start them. Bring them up. Trust me, they need to happen.
We have to start talking about this stuff. Because it’s coming.
Our babies are growing up.
Start the conversation today.
