"You won!"
As I was telling a friend about Ben’s university graduation, he said to me, “You won!”.
At first, I didn’t know what he meant. But then it hit me.
To reach this pinnacle, in his view, meant we had won. That we had beaten the “system”.
A system that always seemed against us. Where we had to fight for even the most basic of needs.
Having to justify every outcome, every dollar, and still getting denied.
Then appealing. Then moving up the chain of command to plead our case.
In the end, always expecting less than what Ben needed.
It was exhausting.
Our win, today, was getting the support Ben needed to transition to work. Without a fight.
Actually getting what we asked for was new territory for us. It seemed too easy. There must be a gotcha coming.
You see, when you start your life with “he may never walk, talk or go to school”, the idea of winning anything is so foreign. All your conversations are about survival and the things you’ve lost.
For every family I have met who are impacted by a disability, there is one common factor. Our lives are dictated by limits and conditions.
And our hopes and dreams are, at best, dulled or, at worst, killed.
To think that Ben, nearly 27 years in, was now a university graduate and beginning a part time job was so surreal. Even that word doesn’t convey the enormity of these milestones.
Did I think these were even a possibility as recent as 10 years ago? Not a chance.
But as we started to believe that Ben deserved to follow the normative pathways of life – you know, get an education, get a job, have a fulfilling life – this became the target that pulled us forward.
One by one, the barriers fell by the wayside.
Overcome anything
Barrier: May not live the day.
Answer: Ben crushed that one.
* * *
Barrier: Seizures.
Answer: They’re a part of his life but they don’t control his life.
* * *
Barrier: Can’t walk or talk.
Answer: Walking is definitely a challenge but his talker speaks his thoughts.
* * *
Barrier: Shunned by his kindergarten teacher.
Answer: We found a new school, and an amazing teacher! Thanks Mrs. Malone!
* * *
Barrier: Low expectations from experts.
Answer: We learned to ignore them.
* * *
Barrier: 24-hour care.
Answer: It’s a big deal but we found a great team to support us.
* * *
Barrier: Major surgeries and hospitalizations.
Answer: They were stressful and worrisome but we took them one hour, one day at a time.
* * *
Barrier: Navigating big, complex, and unfriendly health and education systems.
Answer: It was daunting and exhausting but special people showed up at the right time.
* * *
Barrier: No communication system for Ben’s first 19 years.
Answer: We found people who believed in his potential.
* * *
Barrier: Starting university classes with no education assistants.
Answer: We found people who were willing to try, who saw a bigger picture. And he is a university graduate.
“Stay on Target”
So here’s the deal.
When you’re feeling overwhelmed, and the world seems like it is closing in all around, just keep your eye on the target.
Focus on one thing at a time. One barrier at a time.
It may seem unending, but at some point, a friend will let you know that you have won. Only at that point, will it all become clear. And you’ll realize that you can overcome anything.
I never dreamt that Ben would attend University let alone graduate.
Guess I need to rethink my dreams.
