Caregiving, Disability, StaceyFH

December 8, 2020

I Need to Live Forever

I'm WillowjakMama!

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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“Take a deep breath, Stacey and we’ll see you in a bit.” I didn’t have time to dwell on how vulnerable I felt with my backside out and exposed, when they placed the anaesthesia mask over my COVID-cloth mask. I felt the panic rise and I felt like I was suffocating; I whispered ‘Will, Owen, Jake – I love you’.

Out.

Today I woke up from a non-eventful colonoscopy, in tears. My first thoughts as I came out of the fog was of mon amie Julie. This Friday will be five years since her death from colorectal cancer. No, I am not drawing parallels to the circumstances that brought me to the hospital and those that took Julie’s life. I am sure I’m fine. But Julie was only 42 when she died. She had so much life left. She was fit. She ate healthy. She followed the rules and had a true appreciation for each day as God’s gift after learning the harsh truth that nothing is guaranteed with the loss of both her dad and sister to brain cancer. I am not sure if I was dreaming about her during my procedure, but she was definitely in my thoughts as I woke up.

I have been contemplating my mortality a whole lot lately. I know I’m not the only one. I have had countless moments where I whisper my love to my boys, almost in a superstitious ritual. Since becoming a mom, I’ve done this. When the plane is about to land on the runway or when my car used to drive into those big black Albertan skies, their clouds threatening to swallow us all up or smash us to smithereens with baseball-sized hail.

I’m not sure if it was motherhood, a birthday or the loss of young friends that brought that disturbing realization that I am not invincible. I like to think that with that discovery has come a greater appreciation for life, but the truth is, it’s a combination of gratitude and fear. I’m not afraid of dying. But I’m afraid of dying before I get everything done that I need to do. And more than anything, I’m afraid of what will happen to my boys if I’m not here to take care of them.

Last year, Kim Porter, the mother of Sean “Diddy” Combs’ three children, died in her sleep from pneumonia. She was only a year older than I am and seemingly, just had a cough. How do you go to bed with a cough and not wake up the next morning? Every cold I have these days turns into bronchitis. Bronchitis triggers my asthma and every winter I have nights where I worry that this will be the cold that does me in. Never have those thoughts swirled in my head as much as they have during this pandemic. I know I’m not unique and I’m not looking for any kind of sympathy. But those fears are really ramped up each year that passes that I don’t have a plan for what will happen to my boys when I’m gone.

There is an assumption out there, that Canada is full of these magical places, where cute kids with disabilities who need life-long care can go when they turn 18. They are places that the government likely pays for, that the parents likely feel very confident with, and the individuals… well… they’re beside the point. Right? We’ll just assume they love the places they end up living in.

My boys are nearing the legal age of adulthood. It’s that age where the charities and government supports usually cut-off the applications for funding and the opportunities for fun “extras” in life (like camps and extra-curriculars), just aren’t available. This isn’t to say that programs, funding and opportunities don’t exist; they are just very hard to come by, the waitlists are often capped and maxed out and one application does not fit all. And if you are like some people I know, you think that the Disability Pension will be enough for great housing, all the extra living expenses and a place for them to go to (note I didn’t say a place that offers real purpose for them) during the day. If you are a person with a disability that requires 1:1 support to participate in an activity or for personal care, those options are few and far between and extraordinarily expensive.

So I have had comments tossed to me over the years that have been difficult to navigate. When I was part of a married couple, no one really commented on the boys’ future. It was pretty clear, I think, that we were a family who would go to great lengths to figure out our own solution to this challenge that plagues all parents who are caregivers for their children whose disabilities will likely never allow for their independent living. We had dropped everything to move across the country to seek out services and support for our boys, after all. We were a family that wasn’t afraid to colour outside the lines to find creative solutions, so I think it was believable to others that we would have it figured out. But as soon as their dad left and I was on my own with the twins, the topic of ‘group homes’ became one that crept into the conversation whenever I encountered a challenge with the boys’ behaviours, or even my work-family balance. There was a different tone when the topic came up and quite often, from people who really didn’t know my kids or our home-life well at all – the tone was one of smug authority. Like it was assumed that putting the boys in a group home when they were finished high school was the natural order of things and that I would be happy about that decision. I’ll be bold and say that it reminds me of that feeling you get when you hear a man tell a pregnant woman what she should do with her baby.

Well, I’ll just say that I wasn’t happy with that suggestion and I’m sure my response was often very defensive. Even now, it is difficult to put to words how it makes me feel.

If you know me by now, you know I’m a passionate and emotional person. But if the topic of a group home comes up, or more specifically, if someone words the conversation in an assumptive or directive tone “you’ve got them waitlisted to move to a group home, of course, don’t you?” or “come on, Stacey. Of course you want them with you forever, but that’s not practical, is it? They’re going to be grown men and you can’t be a martyr forever” …I see red.

Not because what they’re saying isn’t a natural thought.

Not because it hurts my feelings or insults me in some way.

But HOW DARE ANYONE talk about my boys’ lives in such a way that implies that it’s a simple and perfect plan that they would be okay with!

This blog post has the dangerous potential of turning into one that burns on the screen with how much rage I feel inside and I am trying to keep it toned down and I’ll save the rage for another time. But at the root of these important conversations, or really, any conversations with others about my kids – what has me so enraged is that the boys’ feelings are not considered. Or they are considered LESS important than their neuro-typical or non-disabled peers. It might be acknowledged that it would be difficult for them, or that they might be sad, but it’s accepted that they don’t really have a choice. In fact, often, I don’t even think it occurs to the person that they might have feelings about the issue at all – that the twins are incapable of feeling the same way ‘we’ are. Or that they are so developmentally delayed that they wouldn’t notice a transition like that. The same applies in many instances of what ‘we’ do with our seniors when we can’t care for them at home.

Please don’t mistake my upset as denial of the fact that the practical solution of assisted living and long term care might be the only option. But we are seriously lacking the sensitivity required in these decision-making conversations. People with disabilities, our mentally ill and seniors are not LESS THAN the decision-makers and they should not be treated like Canada’s 3rd class – something we can no longer deny is happening, (no) thanks to this effing pandemic. News stories online with headlines of statistics of deaths, suicides or outbreaks among our most vulnerable populations living in the streets or in long-term care and group homes are ALWAYS followed by comments that include a disgusting amount of people who don’t think these people’s lives counted for anything.

Okay, I’m ranting. I can’t help it.

First, this country – this province – does not have enough spots in group homes for all the people who will require housing when their caregivers are no longer able to care for them. Adults with developmental disabilities in Ontario continue to wait more than 20 years for supportive housing – This linked story from CBC News is from over a year ago. I can only imagine what the numbers are now. How many stories have you heard about the number of people with developmental disabilities who have been living and locked-down in psych wards for the past year through this pandemic because there was no other place for them to go? I will assume that not many of you have heard those stories, because they don’t seem to get the big headlines. But I promise you, the horror stories are real and they are more common than you want to think about.

Second, I’m not dumb. I’m emotional on this issue, yes. But I’m also a single parent with a good head on my shoulders. I know I need a plan and I know that I would do more harm to my kids if I didn’t have my kids waitlisted in the event of an emergency. As I have said before, I don’t have anyone who has stepped forward to say they would take the boys if something were to happen to me, so I know it has to happen.

But here’s the thing. It’s time to colour outside the lines again. Think outside the box. I know I’m not the only parent with these fears. Forget the fears.. I don’t want to be driven by fear. I want my actions to be driven by dreams. I know I’m not the only parent with bigger dreams for my kids than a government-supported group home. There are other ideas and other options. We just have to create them.

If I’ve made you afraid to bring up the subject with me, I’m sorry for that. Feel free to discuss this with me. Just please think before you speak and because my boys’ don’t have the voices to bring to the conversation, let’s just remember that they are very much a part of the conversation. While they may have diminished agency, they deserve our respect when discussing their lives.

I need to live forever. That’s the bottom line. If you hear me fretting and sounding extra-paranoid about COVID and protecting our little family. This is why. I need to live forever. Or come up with a plan so that I can die happy. My greatest wish is that I find other parents who want to figure this out with me. Together. 2021 is meant for dreaming big.

Stacey aka WillowjakMama

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  1. Deb Patrick says:

    Beautiful, painful words, and something we all need to think about as a society. The old adage that a society’s success is judged by how it treats its most vulnerable members is truth. Wishing you a couple of dreams brought to fruition in this <3

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Hi, I'm Stacey.
Welcome to the
Willowjak Blog 

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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