“Hey, Gladys! Get me a beer!”
A friend asked me what would I do if someone in my extended family – let’s call him Uncle Ralph – talked that way to Ben’s caregiver, Gladys.
I was stumped for a moment, since that has never happened.
But it was a good question and highlighted the importance of knowing where the line should be drawn between keeping the relationship with your caregiver friendly but also professional.
Of course, “get me a beer” is way offside regardless of where that line might be.
So, first things first. At the end of the day, you need to remember that Gladys is an employee of yours even if you’re not directly responsible for paying her.
This sets up the dynamic of an employer/employee relationship as well as the responsibilities and respectful behaviours that go along with it.
Hopefully, it’s a wonderful relationship where Gladys loves her job, she actually DOES a wonderful job, and your child or...
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...
When Jan and I were thrust into Ben’s world of 24-hour care with no preparation and, of course, no training, we struggled a lot … which really isn’t surprising.
We were off-balance nearly all the time and had little confidence on what to do next.
Strangely, we thought we were the exception. An outlier. So different from the rest of the world.
After all, people weren’t lining up at our door to help us figure things out. We were pretty much left on our own.
When it came to providing round-the-clock care, it all fell to us. And I would say, that’s probably how we wanted it.
He was our son, after all. Our responsibility. It was up to us to provide the care needed.
But as Ben got older, his level of care remained high. Needless to say, that just goes with the territory in the world of disabilities.
It took us a long time to figure out that we couldn’t do this on our own (or maybe it took me a long time).
What we didn’t realize...
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...
The statistics1 are staggering when it comes to unpaid, family caregivers. Whether it’s providing care to your child with a disability, your aging parent, or some other loved one, the numbers are mind-numbing.
Here’s the deal:
On top of that, unpaid family caregivers in the U.S. give up $3 trillion (that’s 12 zeroes) per year in wages, pensions and other benefits.2
The scary thing about this is we fell into most of these categories when Ben was young.
We did everything ourselves. 24/7. 365 days/yr.
We didn’t ask for help. We were his parents. His care was our responsibility.
Whenever it was suggested that we should bring in a caregiver to help, we had a million reasons why that wouldn’t work.
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...
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...