When Ben was born, we were told he would never walk, talk, or go to school. At the time, I couldn’t imagine what that meant. I couldn’t imagine how we could live in world that might require 24-hour care. What I’ve come to understand is that this world is more difficult than I thought it would be. But it has also become an important part of my life. Having lasted 24 years, I guess you could say we have somehow figured out how to survive in this ever-changing world.
One Saturday, a few months ago, when it was just me and Ben (Jan was at work), I decided to log every minute of the day to see what 24-hour care actually looked like.
That day began at 9:10am when the home phone rang. I deliberately didn’t answer it. This was my day to “sleep in” since most days begin at 6:30am. I wanted to experience what eight hours of sleep felt like. But with Ben awakening at 4:00am for some unknown reason, just long enough to get...
Somewhere over the last 20+ years, I lost the yearning to dream what life would be like had Ben been born without complex physical and communication challenges.
There was a period when I constantly wanted to press the rewind button to return to a simpler time, to before Ben was part of our world, so that I could understand what I had done so terribly wrong to deserve the burden of raising a child who required 24-hour care.
I am thankful those feelings have evaporated and that my singular focus now is to only move forward, to build on Ben’s successes and help him live a life of fulfillment and happiness.
Occasionally, I do wonder what better progress we could have made if we knew then what we know now. I imagine somehow going back to the day before Ben was born and secretly sending an email to the 29 year old I once was. It would look something like this:
Last week was one to forget. Ben was not himself on Thursday, refusing his afternoon snack and supper. A look of worry and distress was deeply set in his eyes. The flu bug that had knocked him flat on his back a few weeks previous appeared to have resurfaced with a vengeance. It was sudden and violent.
For more than three hours he struggled as wave after wave of pain engulfed his body, forcing him to gag and wretch without success. By 10:30pm, the prolonged stress finally bubbled over into an all-out seizure – something that hadn’t happened in over four years. No matter how many times I witness them, seizures are always scary to watch. And that’s all we could do since we had no meds to calm the convulsions. Those we had used in the past had long since expired. Ironically, only a few weeks ago did we trash our out-of-date supply of valium and, at the time, mused at how long it had been since we had needed them. Plus, we thought, if Ben did have another seizure (very...