You may have heard Ben’s story, one that is 27 years in the making.
Beginning with fighting to live the day he was born, to not walking or talking, to ignoring the experts who didn’t believe in him, to finding a way to graduate from university.
If you haven’t heard the full story, it just so happens that the audio version is available here.
The truth is we all have a story. And that story is really about a journey. One that is filled with moments of joy, and excitement, but also of conflict and strife.
There are times that are over-the-top amazing and times that are also very dark, when the whole world seems to unravel. For some reason, the painful moments are often the most memorable.
The last 6 years that we spent to help Ben get a meaningful education have been all of that. Both wonderful and exhausting.
It took a lot of energy to keep all the balls in the air, all the time, to help smooth the path so he could succeed.
There were battles over support...
I know it’s May but I’m still thinking about this past winter, and how relatively stress-free it was (minus a leaky basement).
I can’t believe I’m saying this. I despise the winter season.
That’s probably because they have always been the toughest to get through for as long as I can remember … I guess, since Ben was born.
Even if I try to be super optimistic, thinking of “winter” still conjures up images of flu season, seasonal affective disorder, hibernations, shorter days, longer (colder) nights, and a suspension of all growing seasons ... at least here in the Northeast.
Winters are lonely, too. I can’t find any complimentary words for this unavoidable period other than, perhaps, it helps me to appreciate the other seasons more fully.
I remember being told that Ben’s first year of life would be the hardest to endure. And as we approached that first winter season, I was filled with an oppressive feeling of...
It was a simple enough question that Jan asked.
“September 2013” was the answer.
If I had been quick enough, I would have turned it into a Jeopardy skit:
Jan: “I’ll take Amazing Milestones for $400”.
Me: “The answer: ‘September 2013’”
Jan: “When did Ben start university?”
When Ben was in high school, I remember being asked repeatedly what I thought Ben would be doing once he finished. At the time, I didn’t have a good answer. The options were few.
The fact that he doesn’t walk or talk on his own, and needs a full time assistant, meant getting a job was out of the question.
On the other hand, sitting at home and doing nothing was also a non-starter.
The only possibility that made sense was for Ben to stay in school and continue to learn. It’s what he enjoyed doing. So we looked at community college and university programmes.
That, also, was a non-starter since he didn’t have the academic...
You’d think after 26 years of living with this stuff I would have found a way for it not to bother me. But it still takes me off my game every now and then.
I guess it’s the psychological damage that comes with discovering that your child, or loved one (or yourself) has a disability or serious health condition.
And the energy it takes to live in a world where you have to fight for everything.
And the worry and uncertainty of what tomorrow will bring.
For me, it’s the unforgettable “he may never walk, talk or go to school”, knife-through-the-heart statement, and everything that goes with it.
Even though none of those things really came true for Ben.
Even though he is just one exam away from graduating … from university!
With 100% certainty, I can tell you that the cure for this funk is to shift focus from what’s lacking (because we will ALWAYS lack something) to what IS.
It's not easy to do. Sometimes you want to wallow in self-pity. But...