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...
Feelings of stress and overwhelm can be sickening. There’s no other way to describe it. But I probably don’t have to tell you that.
By definition, these feelings are overpowering. All consuming. All controlling of your thoughts and behaviours.
Often you just have to wait it out until the storms start to fade. There’s no other remedy. But sometimes the storms don’t fade or you’re never sure when that might happen.
In Ben’s early days, I wasn’t sure where I stood just about every day. There were so many heart-stopping events, so many panic incidents, so many interruptions, so many hospital visits, so many specialist appointments.
It wasn’t anywhere close to being a “normal” family life and my fear was that it would only get uglier.
About 4 months in, I began to write things down everything into a crude list of notes, thinking I could get some control over my life. It was the only way I could remember what had happened on any...
Surgery day. January 4, 2008.
It was surreal at the time. It’s still surreal 11 years later.
The stage 2 adenocarcinoma that had invaded my intestinal tract needed to be removed. It was a type of cancer that rarely shows symptoms. And indeed, it went unnoticed, but for a few days in the summer of 2007 when I didn’t feel “quite right”.
Jan believed something was up at the time, and insisted I get checked out. She was right.
A 15-minute examination confirmed our worst fears. “You have cancer!”
If I hadn’t followed her advice, I would not be writing this blog. A perfect reason to LIVE thankfully!
Even though it was stage 2, the surgeon said there was an 85% chance of a cure given my age, my otherwise healthy self, and the current standard-of-care. When I explained this to my daughter, Tori, she told me very matter-of-factly, “Well, go get cured!”
If I wanted a great motivator to keep living, that was it. A powerful reason to LIVE...
Exactly one year ago this week my father marked his 100th birthday. Lots of family and friends attended his “party” to celebrate this huge milestone and to wish him well.
My father’s good health and mental sharpness were certainly contributing factors to him becoming a centenarian. While I certainly didn’t take that for granted, we had every reason to believe that there would be another party in five years to celebrate his 105th birthday.
On that day, it seemed he would live forever. So when that didn’t happen last November, I was completely unprepared.
His passing has caused me a lot of pain and resulted in much soul searching.
Jan and I were the only family who lived nearby – on the same street, actually. Being raised by his immigrant parents, my father knew well the importance of family and he instilled those values in me.
So, we naturally did whatever we could to ensure his twilight years were fulfilling and comfortable despite...
Without sounding too presumptuous, I know that I speak for a lot of families impacted by a disability when I say that life is complicated. Some days it just sucks. There’s very little that can be classified as carefree.
On the weekend, I took some time to try and figure out how things got this way. It was sparked by the recent passing of my father. Somehow death has a way of shaking things up.
I tried to think back to when Ben’s brother was born. Jan and I were so young. When he came into the world, he was clean and pure, having knowledge of absolutely nothing except, perhaps, Jan’s voice.
As he grew and became old enough to listen, we, his family, his teachers encouraged him to believe that he could become just about anything they wanted to be.
I expect that’s similar to what plays out in many families.
But you know as well as I do that as kids grow older, and life gets more complicated – they get in with the wrong crowd, they are...