For most parents, the season of our lives when our children are young looks distinctly different from the rest of our lives. It’s expected. We understand the burden of having young children. We know the time investment that it takes and the limitations of our children’s physical, emotional or temperamental state of being. We adjust accordingly. We don’t take the whirlwind holiday in Europe with toddlers and newborn in tow. We don’t climb Kilimanjaro on maternity leave. The trust we have in the temporary nature of this season is one the the things that gets us through it. And the rewards we reap from the newfound positive experiences of parenthood more than offset it…for most of us at least. But it’s a grind. Even in the easiest cases.
The grand challenge of special needs parenting is best described as an indefinite extension of this acute stage of parenting. For us, this stage doesn’t end when our last child hits kindergarten. Sometimes it doesn’t end at all. So many of us descend into a bunker mentality of crisis, waiting for someday when the heavy shelling has ended to poke our heads out and venture again into the new peace. Tragically, many of us never come out. This is where special needs parenting teaches a universal life lesson:
That there is no guaranteed someday. Not for us.
Whatever limitations our children have may improve in the future. They may not. They may develop others. Cruel uncertainty is one of our only certainties. Another is that the things we want to do, the ones worth doing, will always be some version of hard. There will never be an easy time to do them. The trick to doing them is the same trick to starting anything. To start now…where you are…with what you can… This doesn’t mean we do things we clearly know our families cannot do. That would be stupid. But it does mean we need to start doing the sorts of things that are on the way to our impossible. Push boundaries. Extend yourselves. Don’t listen to the poisonous voice in all of our heads that tells us that the pain in failing is worse than the pain of a life in the darkness of the bunker with the shells raining down on us in relentless perpetuity.
We’ve gone to movies and not made it through the previews. I’ve had trips to Disnelyand that lasted 20 minutes. Once we didn’t even get out of the parking lot. Once, on a cross country flight, when my son had screamed like he was being lit on fire for six straight hours, a doctor onboard asked me if my son needed a sedative. My answer…no…but I could use one…or maybe he should take it himself if it would help….because fuck that guy. I’m at war with the forces of good and evil on a pressurized tube in the stratosphere and the rest of the world is worried about annoying sounds. I can’t help them with that. Not at the risk of never leaving the bunker. Not for the promise of a someday that won’t ever come.
Life is fragile and short. We need to value someday less and today more. Dare to try. Dare to try to do the things that broke your heart when you learned what this life would be like and you feared you’d never do them. Embrace the failure. Celebrate success…and get on with living the one life you and your family have. Because someday is a myth. It never comes. And so much of what’s wrong with the lives we lead happens while we wait for it.