Earlier this week, Jan and I attended the 2018 CMV Public Health and Policy Conference. Several hundred people gathered in Burlington, VT including lots of parents like us as well as clinicians, researchers and medical specialists focused on a nasty virus called CMV.
If you don’t know what CMV is, you need to learn about it.
CMV is COMMON: In fact, it’s the leading viral cause of disabilities in newborns worldwide with more than 30,000 babies born each year with congenital CMV. Unfortunately, most physicians including OB-GYNs would tell you it’s rare and not to worry about it.
CMV is SERIOUS: The list of lifelong impacts is long but it can cause hearing loss, vision loss, cerebral palsy, microcephaly, seizures and developmental disabilities.
But that’s not what this blog post is about. Well, it is, in...
Weird headline, I know, especially coming from me ... when every blog post I’ve published on caregiving has been upbeat and positive about why you absolutely need to bring a great caregiver into your life.
And how this is the key to creating more balance, energy and freedom in your life.
I mean, we even created a best-in-class training course on how to find, hire, and train a great caregiver and nurture a wonderful relationship with them. (Learn more about The Caregiver Support Formula).
So why would I focus on the downside to all of this?
Well, with just about everything in life, there are trade-offs. There is a cost and price related to everything that we do and every decision we make.
The question becomes, is bringing a caregiver into your life worth your time and energy?
Here’s a hint: the answer is a resounding YES!
But you need to be prepared, to understand these “costs” (and I don’t mean monetary), and what you’ll be...
Having a caregiver in our home brings a certain dynamic to our lives and Ben’s life. Some of it’s good. Some not so good.
One of the things we’ve learned is to “pick our battles” since everyone comes with strengths and weaknesses … and baggage.
It’s a balance. As long as Ben’s caregivers are focused on him and treat him well, that’s really the only criteria. We can live with just about anything else that comes with it.
One of Ben’s caregivers – let’s call her Savannah – had been with us for about 7 years. That’s a long time in “caregiver years”.
Savannah’s greatest strength was her reliability. She always stepped in to fill the gap when other caregivers didn’t work out or quit without notice. And she was willing to do consecutive overnight shifts – a big plus if we ever wanted to get away for a few days.
But she often strolled in late for her shifts, and she...
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...
Keeping your child safe is a no-brainer. As parents, this is front and centre especially when our children are young.
Safety is also a trump card. How can you argue about not being safe? But if exploited, it can be used to create fear and uncertainty.
When Ben was in his second year of high school, we pushed to have a structured schedule in place to help him develop his physical skills.
We believed that if we didn’t give him every opportunity to stand and walk, he would never learn how to do either.
I mean, that’s just common sense, right?
How can you learn a skill if you’re never taught and given the opportunity to practice?
But including standing and walking into his daily routine required the expertise of healthcare professionals to assist the school staff.
Unfortunately, most of the therapists we encountered didn’t believe that Ben could ever learn how to do either.
And when it came time to provide any recommendations...
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...