Sometimes during our journey as parents of children with a disability, we become consumed with an overwhelming feeling that we’re just not doing enough to help them succeed, believing that somehow it’s our fault. This can happen for no apparent reason. We even feel that no matter what we do, things just aren’t going to change and, too often, we are paralyzed with guilt if we even consider taking time for ourselves. In this world, time is not our friend. There are simply too many things to do and never enough time to do them.
When I fall into this dark place, I am also reminded of how precious our time is in this life. How we need to make the most what we’re given since we never know when the next crisis will arrive. Making the most of what we’re given also includes investing the time we need, as parents, to reflect, re-energize and renew. Even though that would take us away from our time with our kids (in my case, Ben), we know we have to do it so we can be there for them long term.
As Ben and I sat and “talked” last evening, I realized that the month of February was just about complete. A month of my life, and his, that we will never get back. And I began to wonder did I spend that month wisely? Or did it just happen and that’s OK too? So much of our life is ordered and planned but to what end?
Change of Plans
A Februarys ago, my plans included a 5-day golf trip to Florida, an attempt at some renewal and restoration. But those plans were quickly changed when the airline abruptly rescheduled my flight to the day before in order to avoid a massive winter storm that was forecast to slam into the region. I got the phone call at 1pm and had only a few hours to make the new flight.
Ben was in high school at the time, and when he left that morning, he fully expected to see me that evening. But that wouldn’t be the case. For a moment, I thought of just leaving and not telling him. For another moment, I thought it might upset his day, surprising him at school, by telling him I was leaving that afternoon instead of the next morning. I hesitated because even if I did tell him, it wouldn’t be done in private and I wanted to give him time to process that I’d be away that night instead of the next morning. But even after all of that consternation, I decided just had to find a way to tell him.
When I got to the doorway of his classroom, Ben was sitting with perfect posture, about halfway through his lunch. Most times, I would choose not to intrude with his classmates present but I had no choice. I made eye contact with him. He did the same. I greeted him softly and he grinned. He wasn’t embarrassed today. Yes!
I walked over to his teacher’s desk and told her the change of plans of my flight being cancelled because of the pending snowstorm and that I had to leave in a few hours. She said I was lucky that I was able to change plans so quickly. I suppose that’s true.
Time was up. I had to tell him.
I got close and explained that I needed to leave for the airport that afternoon, most likely before he got home from school, and told him to behave himself. Ben stared intently into my eyes, understanding every word I uttered, and gave a double wink of acknowledgement. No hesitation on his part. No “why is my Dad here?” or “what is he telling me?”. It was all good in his mind.
I told him it meant an extra night of me being away, and he smiled. “No worries, Dad”, he was telling me.
Feeling the weight of a thousand stares, I crossed the line and kissed his forehead in front of everyone. I just had to. I didn’t care that we were on display. He didn’t care either. He readily accepted my affection. His contentedness was all I needed.
As I left the school, I felt a huge burden had been lifted. I felt like Ben had given me permission to go – not in an authoritative way but to tell me to enjoy myself, that he’d be fine. And then it hit me just how mature he had become. I shouldn’t have been surprised by his response but at that moment, I just wanted to be with him and not go on my trip. My desire for him to achieve greatness and enjoy life as an adult grew even stronger that day.
Ben’s “thumb up” response was a sign that it was okay for me to park my obsessive ways, to re-energize myself, to spend some time relaxing even though I have no idea how to do that. A week on pause wouldn’t matter. I had to keep the big picture in focus. Forget the micromanagement for a change.
As I waited for my ride to the airport, Ben’s bus pulled around the corner. I was so happy to see him. I told him I would bring him a golf shirt and asked what colour he would like. Yellow or black was his answer.
After I boarded the plane, I decided I would get him one of each. That would be a small reward for showing me that investing in myself is a good use of everyone’s time.


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