Caregiving, Disability, StaceyFH

October 19, 2020

Fear of the Future & Finding Your People

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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I haven’t done this before, but I thought that since I had such a strong, emotional response to yesterday’s post S(care)d by Shy Liza, I would write about my reaction to it. Willowjak has a writing theme each month to help prompt us along with ideas that might be in line with what the rest of the world is feeling at the moment. Fear is our theme right now and while Liza refers to caregiving as being scary, I will tell you that I live with the constant fear that I won’t have caregivers for my boys, when I need it the most.

First – how incredible is Liza? Truly.

Liza’s family came into my life, I think, in 2005. Those years are fuzzy in my memory, but I do remember that they played a significant part of our family’s journey, even back then. Their family of five had just moved back to Ontario after living out West and we had just made the difficult decision to move to Alberta, to chase after autism services and supports for the twins. We didn’t know where we were going, only knew we had to get there ASAP. I had never been west of Winnipeg and I was so sad to leave the community that I had been building in Bowmanville, where we thought we would be raising our kids forever. Liza’s family had joined our church and I remember connecting with her mom, Laura, who told me of a specific church in a specific neighbourhood in Calgary, that I might want to check out when we got there if I was looking for a similar faith community for our family.

Well wouldn’t you know it – we ended up buying a house in that very neighbourhood of Calgary and I never forgot that Laura had pointed me in that direction. One that turned out to be one of the best decisions I have ever made and one that gave me some of the best years of my life. Seven years later when we moved back to Bowmanville and I returned to our home base church to reclaim some of those relationships and the community that I so wanted for my boys, Laura and I reconnected.

There are people in your life who seamlessly and silently become a part of your family’s fabric. Laura is a seamstress. She probably doesn’t know it and I somehow doubt she does much sewing (she’s too busy), but without a Laura, things and people are left loose and flapping in the wind. She connects people with things, and other people. She is the epitome of pastoral care. She checks in without invading your space. She sees a need and she thanklessly fills it. Food, a friend, a drive, groceries, dog biscuits for your pooches, a thermometer in a health crisis.. Wisdom, a shoulder, compassion and hope.. she finds it when you need it and quite often, when you don’t even realize you needed it.

Laura’s three daughters are made from the same mould. You only have to read Liza’s posts to get a feel for the values Laura and her husband Bob have instilled in their daughters. They are beautiful people and each of them have played a role in the enrichment of my life with the boys.

We came full circle with Laura’s family the day her girls were old enough to start helping with after school care for Owen and Will, while I was at work. Amy was first and what a breath of fresh air she was. My guys loved her and it was very obvious that they respected her. There’s a magic component to caring for my guys, that some support workers either have, or they don’t. Some think they know it all because they’ve got the education. Some think they know it all because they know someone with a similar diagnosis. Some think they’ve got it in the bag because they just *LOVE* people with autism because they’re so cute and fascinating (sense my sarcasm). If someone comes in to my home to meet the boys for the first time and they use a baby voice when talking to them – they don’t have it. And it’s not long before Will will literally show you the door (by opening it and saying “buh-bye”). There’s just an “it” factor that you’ve either got or you don’t and it’s rooted in a person’s values and their character. It’s how they approach people and life and it’s how they respect others. Owen and Will sense it too and they know when you’ve got it. Amy, Liza and Olivia have all got it.

Liza was next when Amy went off to University and that’s when our world really shifted. From a school project, she came up with a plan for a Friendship Club for Owen and Will, that often involved her sister Olivia, Laura and a few awesome ladies from our church. Suddenly their world just got bigger and so did mine. I had people in our world that I didn’t have to pay for their company and compassion. They filled a hole for all of us and they started to chip away at the black hole of fear that I have been carrying since the boys were diagnosed and especially since I’ve been a single parent.

Because ever since I was a paid caregiver myself, in my work before having kids as a support worker, I have been terrified. Because I got to see life after 18 for many people with intellectual disabilities and the options are few.

I don’t have a plan for when I’m gone. I don’t have a plan for being sick. COVID has brought all of those fears to the forefront as I’ve found myself in the quiet of my own room when everyone is asleep – writing lists of details that someone might find and need to take care of my boys if something were to happen to me. I don’t have a will because I don’t have anyone who has said they would take the boys if anything were to happen to me. I live with this fear. Every. Day.

So I think about all of the things that could happen if I were to drop dead and someone else made the decision to put the boys in a group home. Would they get the “scary” care that an angel like Liza would provide? Or would they get the kind that I witnessed when I worked in that field. I can only say that some of what I saw, was enough to tell me I didn’t want that for my boys if I could help it. I have lived nearly two decades with my boys, waiting for the magic solution to reveal itself; one that would find the balance between my own independence from caregiving and some semi-independence for the twins. I have had such a strong faith that the answer will come.

Laura’s family showed me it’s possible. They needn’t read this post and worry that I’m putting their names in my will. But like the black shutter of a camera opens and closes, my black hole of fear is shrinking smaller as I realize that there are people in the world who care enough to stand in the fear with you.

In my last year of high school, I worked as a community and respite worker for a man named Michael, who had Down Syndrome. I can’t hear the song Moon River without thinking about him to this day, as he would sing it often, so quietly, while pointing his index finger at you so you knew he was singing just for you. I just realized in writing this, that he was the age I am now -46, and he lived with his 90 year old mother in West Hill (Scarborough). She was a widow and had been for a long time. She lived in a teeny little bungalow and had refused to sell to developers so they had built a brand new subdivision all around her little house. Inside, it was like stepping back in time into the 60’s. The furniture had never changed and they lived with only the bare essentials. Michael’s mom cut his hair and hemmed his pants – both his bangs and cuffs were way too short that it was almost comical.

She loved her son so much. You could see it in her every action. She was attentive to his needs, she would watch him with her eyes. There was something ‘off’ with the situation and I could already sense it, despite my younger age. This scene did not fit what I would expect to see. It’s unusual to see a 90 year old caring for someone else. It’s usually the other way around. Her body was clearly in the stage where she would be more comfortably being tended to. I watched that little old lady make Michael soup on the stovetop and I remember watching her shuffle back and forth in the kitchen, slow as a snail, and I remember all the ache I had for her and her situation, even in my naivety as a teenager who didn’t yet understand the intensity of being a mother, a caregiver or even of just having to be responsible for another human being. When I would leave their house, I would worry about them, wondering how they were surviving alone in that house, wondering what would happen to Michael when his mother would inevitably pass away.

One day while I was there, a couple showed up to pick Mum up to take her to a doctor’s appointment, while I would stay with Michael. I had a nice chat with them and learned that the gentleman was in his 60’s and lived in Hampton, Ontario (a little community just north of me now in Bowmanville). He told me that he had met Michael and his mother years before, through his work as a cab driver. He had picked them up for a fare and was moved by seeing how this aging mother was still caring for her “baby” all by herself. He and his wife started to drop in for visits with groceries and would drive them for free whenever they had errands or appointments to get to. It was about a half hour drive from his house to theirs and I was so struck by the deliberate choice this couple had made, to make Michael and his Mum their family, – their responsibility. He told me that they would be taking Michael in when the time came.. and I have never ever forgotten how this story changed my perspective about people, community and caregiving. That strangers would become a lifeline for people who would have otherwise just faded into the background, unseen by the busy world that was swallowing them up. Michael could have likely been left alone, but for the kindness of strangers.

It wasn’t until over a decade later when my boys were diagnosed with autism that I understood the depth of that kindness. I have been on a search for those kind of people ever since. Laura’s family has brought me a step closer to believing I will find “our” people and our solution. The world is a little less scary when you’ve got people who stand in it with you. May everyone be so fortunate to have Shy Lizas in theirs.

Stacey aka WillowjakMama

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  1. Rev Michelle says:

    There are many angels who walk this earth and you speak of some of the most gracious, loving and humble ones I know

Hi, I'm Stacey.
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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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