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...
As a battle-hardened parent, I've been shown a lot over the last 25 years, often more than I want. Actually, it's really my son, Ben, who has shown me a lot.
He has been on a roll of great days. Nearly 10 straight weeks without a seizure. In our world, a day without a seizure is what we call a great day.
No one can explain why he’s been seizure-free during these last two+ months. A lot of assumptions and maybes are made to try to explain it. No one can predict what tomorrow will bring, either. But 10 weeks … we’ll take it!
There is a strange symbiosis between Ben’s demeanour and mine. When he is happy, I am happy. When he smiles, I can smile all day long. In reality, I can’t smile without him. Even the smallest of grins is contagious.
With this many great days under his belt, I sense a bump in his confidence, too. Before Christmas, he had his final exam that was worth 35% of his final mark. It was going to be tough—a...
Earlier today, a friend of mine posted on his Facebook page, “Cruise booked!”
I scoffed and rolled my eyes. The only way that would ever happen in my life would be if all the planets and stars aligned.
First, we’d need to book caregivers to cover each day we were away, and that means 24 hours per day, along with a backup plan if one of them couldn’t keep their shift or we got delayed coming home.
Second, we’d need Ben to be healthy leading up to our departure. No seizures. No strange behaviour. Obviously, it would be impossible to predict any of that months in advance.
Third, we’d need a way to get home quickly in an emergency. Floating on the open waters would make cruising just about impossible.
And last but not least, we’d have to be able to afford it. Or rather, is a cruise where we want to spend our money and do we want it bad enough to go through all this prep work?
I have to be honest. My first reaction to reading about his upcoming...
I remember going to our very first appointment to talk about getting a wheelchair for Ben. It was with the Remedial Seating department at the IWK Children’s Hospital in Halifax.
I remember feeling rather unsettled that we had reached that stage with Ben.
The simple Perego stroller and ethafoam insert wasn’t doing the trick for him anymore. The only realistic option was to transition to a paediatric wheelchair.
But I didn’t want to go there since it was an admission that Ben’s physical disabilities were becoming more complex, and we were losing control.
I didn’t mind our weird looking stroller. Sure, some people stared. But having to use a wheelchair took weirdness to a whole other level, and it would mean just about everyone would be staring at Ben and us, no matter where we went.
We were presented with different types of wheelchairs along with a list of add-ons and options and needed to make some decisions.
I don’t know about you but I’ve grown weary of the 24-hour news cycle. It used to give me a rush but not anymore. I include all social media channels in the “news cycle” category, too, since they often bombard us with a lot of useless and distracting information.
Admittedly, my attention to the news cycle was heightened after the 2016 U.S. election. The stories that came out were so absurd and eye catching it was nearly impossible not to notice them.
But a year later, these stories have become almost soap opera-like, where I can skip a whole month of episodes and still know what’s going on.
In reality, the minutiae of the “top story”, of what’s fake and what isn’t, doesn’t really matter. It adds nothing worthwhile to my life and certainly doesn’t contribute to helping me support Ben.
The only thing it does is agitate me and instill a dose of fear. Too much of that negatively affects my mood – I’ve...
From the moment that Ben entered our lives 25 years ago, we have always felt a tinge of fear. By far, it is the number one issue we deal with on a regular basis … along with just about every family we’ve met who have been impacted by a disability.
It is the most common obstacle that holds people back and prevents them from living the life they dream of living, disability or not.
Fear has this knack for never really going away, simmering just below the surface.
No matter how strong you think you are, fear will take you down. It has a way of surrounding you and waging war with your mind.
It will cloud your view of the world and control your thoughts and behaviour.
By its very nature, it is designed to paralyze, attacking your confidence, your competence, your self-worth, and your energy.
Some families have shared with us that their biggest fear is that they will fail their children in some way.
Somewhere along the line it...