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...
Whenever any one of us get sick, we rely on our body’s immune system to combat whatever virus or bacteria we have contracted. Sometimes we need an extra boost, like an antibiotic, an anti-viral, or a flu shot, to complement our immune system so we can get better more easily.
A person’s physical fitness level also plays a big role in how well he/she can fight off the infection. But I’m sure you already know that.
When we are faced with adversity, such as the sudden loss of our job or learning that our child has a disability or health issues, our immune system really can’t help us much. Our physical fitness level can keep us moving but it is our emotional strength and coping mechanisms that allow us to combat this adversity and “get better”.
Put another way, our “coping fitness” determines how much stress, anxiety, and emotional trauma we can handle and how well we will recover. If it’s in good shape, we can...
Somewhere over the last 20+ years, I lost the yearning to dream what life would be like had Ben been born without complex physical and communication challenges.
There was a period when I constantly wanted to press the rewind button to return to a simpler time, to before Ben was part of our world, so that I could understand what I had done so terribly wrong to deserve the burden of raising a child who required 24-hour care.
I am thankful those feelings have evaporated and that my singular focus now is to only move forward, to build on Ben’s successes and help him live a life of fulfillment and happiness.
Occasionally, I do wonder what better progress we could have made if we knew then what we know now. I imagine somehow going back to the day before Ben was born and secretly sending an email to the 29 year old I once was. It would look something like this: