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...
It was a silly question to ask a group of 300 high school students because the answer was obvious. With over 3 billion smartphone users worldwide, who doesn’t have one?
I was asked to give a presentation to these students on what it takes to build an inclusive world, and as I waited on stage to be introduced, I could see many of them trying to get one last text message sent.
The basis of what I told them about inclusion (naturally) centred on Ben’s achievements, which were a direct result of the inclusive community that supported him.
But since they didn’t know Ben, even though he was a graduate from the same high school, I was unsure what I could leave with them that would be relevant to their lives.
I opened with some background on our life with Ben, and the pain and struggles we constantly faced, especially in the early years.
I showed the film, “Including Me: Ben’s Story” (you can watch it here), which raised a few eyebrows.
And then I talked...
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...
Four days after Ben was born, a specialist told us, “He may never walk, talk, or go to school!”
I wasn’t sure what he wanted me to do with that statement. I mean, how are you supposed to respond?
Maybe … “Oh, ok. Thanks for letting me know…”
If he was trying to convey a suffocating feeling of hopelessness, he did a fabulous job.
At the time, I remember asking one of my siblings (a physician) why such a cruel statement would be made. The answer was that doctors are trained to “hit” with the worst news first because parents will cling to even the slightest glimmer of hope.
I wasn’t clever enough to respond 26 years ago but looking back, I now see how ridiculous that statement was, too. Why does a doctor get to decide if you should have hope or not?
Here’s an idea. Rather than leave young parents (us) with the belief that their newborn child would essentially be a blob for the rest of his life, why not say something...
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...
"Sir, if you'll not be needing me, I'll close down for a while."
Do you know who spoke that line? In what movie? And in what scene?
Send me an email ([email protected]) with the correct answers to all 3 parts … and I’ll give you a free copy of our deluxe edition audio book !!
Ok, so how many times a week do you just “close down for a while”?
You know, just un-plug, relax, re-charge and stop micromanaging your life or your child’s life?
And when you do close down, what is it that you do? Do you even know how to relax and calm your mind?
If your child or loved one has a complex medical condition or disability, I don’t have to tell you about all the balls you’re juggling … all the time. And how closing down for even an hour is not possible most days.
What I need to tell you is that sometimes … sometimes you have to force yourself to close down, which sounds like an oxymoron – forced relaxation!
Sometimes you just...
A young mom posted online today.
She had just learned that their newborn child was born with complex medical issues which included epilepsy, cerebral palsy, and possible development delays. All the things we were familiar with.
She wanted to know how children in similar situations were doing today.
My first reaction was how amazingly strong was this mom … to have the wherewithal (you just don’t get to use that word often enough ) AND the energy to post about this devastating, personal discovery.
Not only that but to also look for help right off the bat.
Within seconds, all the feelings and emotions from Ben’s birth 26 years ago became fresh again – things like being told he may not live the day and would likely never walk, talk or go to school.
It’s quite remarkable how these feelings can be resurrected so easily. How they never really go away.
I began remembering what it was like to be back in PICU (paediatric intensive care unit) during that...
How many times have you searched for answers only to find they were right in front of you the whole time?
(If you answered “Never”, then you really need to keep reading!)
Why does that happen?
Without a doubt, painful or stressful situations take you off your A-game, especially if those situations are unexpected.
If it involves a serious health issue with you, your child or some other loved one, emotions run high, and it’s tough to think clearly.
Your first reaction is to look for ways to stop the pain, right away. It’s only natural.
You want an immediate fix to the problems. But nothing is easy to find.
Too often, the tendency is to over-complicate things. Details and issues all blend together until the problem looks impossible to solve.
That’s when overwhelm sets in. You can feel defeated. And it drains you of energy and hope.
There comes a point, though, when the pressure and the barrage of negativity slows, and you can catch your breath.
Yesterday morning began the same as most.
Hit snooze, again.
Get up. Unlock the back door for Ben’s assistants. Turn on the kitchen lights and back to the bedroom to get a shower.
I decide to browse my iPhone while waiting for the water to heat up and find an amusing Facebook post.
I start a sarcastic reply and then … SILENCE.
No power! The house is back in darkness. I’m taken off-guard, not really sure what happened. and feel a small wave of anxiety rise inside.
I find the power company’s website and discover that there are 1,500 customers affected by the outage.
Good! It’s not just me. It’s not the whole world, either (maybe that’s where the panic came from). But it would take at least 2 hours for it to be restored.
That's too long to go without power in the winter. So, I throw on a heavy coat and brave the -20C weather to start our generator … which, by the way, isn’t easy to do with arctic winds...
For a lot of families, the birth of a child is a joyous event – or, at least, it should be.
It’s a time for celebration, unlike any other. The hours and days that follow are a time when you begin to form and nurture that important bond. One that will last a lifetime.
But being told that your newborn child has a serious medical issue or disability is the verbal equivalent of “shock and awe”.
It leaves you rudderless, without purpose, and desperate for answers.
In the blink of an eye, your dreams for a fulfilling life are shattered and your plans are turned to dust.
Thoughts of playing ball with your 6-year old, or going on fishing trips, or relishing a dance recital are wiped out.
When I was told that Ben might not live the day he was born, I was devastated. Completely lost. Nothing made sense.
Before that day, I really didn’t know sadness.
I thought I did. I thought I had done all the right things and didn’t expect anything less than a perfect...