I have to be honest. After 25 years, the pressures and strain of raising a child with complex disabilities have never gone away. They’re not always top of mind but they remain, nonetheless. Most of the time, these pressures don’t bother me since they’re just a part of my life.
But I’m finding that the older I get, the harder life gets.
Life isn’t supposed to get harder as you get older. It’s not, right?
Starting out like many young couples, we were filled with excitement and optimism about building a fulfilling life for our family. We had boundless energy and were eager to tackle new challenges. And … We were told that all of the effort we put in during our younger years would pay off when we’re older.
Invest now. Reap the rewards later. Or put another way, reap what you sow.
It was a realistic strategy. For a few years, at least. Until Ben came into our lives. Everything changed after that.
Everything Changed
From that point on, there was nothing available to invest. No time. No money. No anything. The goals we had were exclusively focused on the here-and-now: survive today, sometimes by brute force, and hope for something better the next day. Life was essentially out of our control nearly all the time.
That here-and-now strategy became the new normal year after year. For the most part, it worked for Ben. He managed to prove most of the experts wrong. Despite the dire predictions at birth that he would never be able to walk, talk or go to school, he has found a way to succeed at the university level.
But that strategy cost us a lot as a couple—physically, financially, and emotionally. It’s the latter that affects me the most.
You see, the older I get the more I worry about finding the emotional energy not to worry because worry is so wasteful and draining.
It’s rather strange. Even though my body has way too many miles on it, I don’t actually worry about not being able to physically support Ben. Rather, it’s the mind games, the eroding of confidence, and the surrender that this life will not ever get better. How could it after 25 years? These are the things that I worry will someday take me down.
I know these things are purely manufactured in my head. I know they aren’t real because when those storm clouds finally clear, so does the worry. But I can’t seem to stop manufacturing them.
It happens most often when things go off the rails—like when Ben gets ill or his seizures suddenly appear (I hate those the most). The resulting accumulation of worry quickly transforms into loneliness because as surely as we have gotten older, so has our family, and our friends. And I think about how barren the next 25 years might be.
The Older I Get
I guess it’s fair to say that the older I get, the lonelier I get, but I don’t want it to be that way.
What’s particularly true is that the older I get, the more I look to fill this void of emotional energy. I can’t blast through obstacles like I used to so I have to find the energy somewhere. And that somewhere is with God.
I find the more I surrender to His will, because I don’t have the energy to do it on my own anymore, the more the void is filled. But surrendering is difficult. I like to be in control. I like to know what’s going to happen next.
The older I get, the more I have to trust in God and rely on His grace and direction to carry me through.
And He does, because there is nothing like His love. I wish I had learned that long ago. Perhaps the price we paid would not have been so great.
Mike is co-founder of SoaringFamilies, an online community focused on providing families with Caregiving expertise and Coping solutions, so they can live more freely, more fully and with more energy. SoaringFamilies is about believing in a future that is bigger than the past, creating a world where all persons are accepted and included, and where every life is of equal value. Visit https://soaringfamilies.com to learn more and experience the inspiration of Ben's story and the power of an inclusive community.
