Archives for the month of: April, 2021

Music is wafting down the staircase from Cate’s room. I can hear her typing, working on a project. In just months, if all goes as planned, she will be working at the camp she has known since childhood. I will drive her up north and help set up her cabin. If it is a nice day, I might take a dip in the lake before hugging her goodbye and hopping back in the van. Dion and I will likely visit her once or twice over the course of the summer. We will have lunch in Parry Sound, wander through our favourite used bookstore, get Kawartha ice cream in waffle cones, admire the Georgian Bay, and then head back to Toronto before dark. In late August I will pick up sun-kissed, tired, and elated Cate. She will collapse into her bed and I will be grateful to peek in and see her sound asleep. This is a familiar rhythm, one that has been established over many years. 

The comfort of this pattern is soon going to be interrupted. This year, after I pick Cate up from camp, I will be helping her move into an apartment of her own, one that will be shared with a wonderful friend. As far as first apartments go, this one is pretty amazing: it is filled with light, has a view of the city and is steps from public transit. It is far enough away that Cate will be able to embrace new independence, while being close enough that we can easily see one another. I am thrilled that Cate can take this next step. And, I don’t know how to be ready for this monumental change. 

I have loved every stage of parenting Cate. Being her mother is one of my greatest joys. She has been since her arrival, a constant companion. In Cate’s early days she was almost always glued to me, either in a carrier, my arms, or somehow attached to my leg. I remember being content to let Cate’s confidence grow in her own time, and it did. It was and is a wonder to watch so many things emerge in her, including compassion and creativity. I believe this will just continue, recalling my own mother emphatically saying, “Erinn, parenting just gets better and better”. 

As much as I trust what my mom said, I find myself feeling anxious and scared about this transition. I can remember what life was like before having a child. What I don’t know is life with Cate that doesn’t include her living with me/us. It’s not that my identity is in question, or that I now doubt my value. I am many things, in addition to a mother. It’s not that I don’t want Cate to spread her wings. In fact, this is exactly what we have wanted to prepare her for. And so, what is it? It’s that I am going to miss her. A lot. 

Sometimes I look at Cate and catch my breath, reminded that I am hers and she is mine/ours. How wild that she spent nine months in me and came out with a head of auburn hair and a knowing look in her eye. I have learned so much from and with her over the last 18 years, about things like perseverance, forgiveness, routine, flexibility, loyalty, empathy, grief, adventure, fun, and love. I’ll never forget getting stranded overseas with Cate, just the two of us, after a major flight cancellation. She was the most patient person in a waiting room of exasperated adults and turned our ordeal into an escapade, one that included joining a high school prom at midnight, creating a meal out of finds at an after hours gas station, and travelling from one airport to another clear across town so that we could eventually get home (that story should be a whole entry of its own). 

I do have a lot to process. I am trying to address my anxiety and allow all the feels. I am talking to my therapist and sharing what is going on in me with Dion. Cate and I are talking about what this means for both of us, including me reading her this. I believe that Cate growing up is good and something to be celebrated. Right now, Our Love is Here to Stay is the music coming from Cate’s room. “It’s very clear, our love is here to stay. Not for a year but ever and a day. The radio and the telephone and the movies that we know. May just be passing fancies and in time may go. But oh, my dear, our love is here to stay”. In a whole lot of uncertainty, this I trust to be true: our love is here to stay. 

EDIT: The subject of this blog, the broken lift which halted Dion’s mobility, was fixed exactly four weeks after its breakdown. Thank you to everyone who offered us support from near and far during this time.

When my husband Dion went through the most significant crisis of his MS journey a few years ago, we were faced with many decisions, including: did he need to live in a long-term care facility? If not, could our home be adjusted to accommodate his needs? What ensued was a long renovation to our house, one that was made possible through the gifts of many people, and yes, the bank. Along the way, we had a number of meetings with medical teams in order to discern what Dion needed, what I needed, and what we needed as a family. 

We determined that our basement would become Dion’s main living space, an option made possible through the discovery of a through-the-floor lift, aka a residential elevator. My brother/contractor organized the many trades people needed to dig down so that the ceilings would be high, build an accessible bathroom, create a space for a hospital bed and all the necessary mobility devices, make a cozy area for all of us to hang out, and install the elevator. The transformation was remarkable and enabled Dion to move home after living elsewhere for over a year. 

One recent evening, just as Dion, Cate and I sat down to dinner, there was a loud “thump”. At the time, I was the only one who noticed it. We figured it must have been something outside and proceeded to eat. When Dion got in the elevator to get downstairs in preparation for the arrival of his Personal Support Worker, it would not go down and we realized it was the culprit of the “thump”. The lights came on as they should, but nothing. I tried calling two different after-hours repair companies, only to learn that no one at either could service our particular unit. Stumped, we decided that Dion needed to be carried down the stairs (a precarious, but necessary choice) so that he could get to bed. We presumed that by the next day we could get the elevator fixed. That was three weeks ago. 

Since that time Dion has felt trapped, his independence halted. Through the effort of a mechanic, Dion’s wheelchair was able to be moved downstairs. That chair weighs in at over 400 pounds, making it necessary to leave it in the basement. Instead, we have a rental wheelchair that now lives on our main floor. At least three strong people are needed to lift Dion up and down the stairs each day, or at least every other day. 

When Dion is in the basement, Cate and I need to make sure that he has the things he needs. We have Personal Support Workers in twice a day, but only in the morning and evening. That leaves a large gap in Dion’s day. Plus, Cate is in school and I have a job, one that helps support our family. Internally, I battle with needing to be in multiple places at once, sometimes terrified that I am failing at everything. Dion often says that MS is “our” disease. It is one that each of us (including Cate) is required to carry in different ways, some more visible than others. 

Today is Maundy Thursday, the day we recall how Jesus knelt and washed the feet of his friends. Having someone else wash your feet is an intimate and vulnerable thing. These last three weeks have felt a lot like that: intimate and vulnerable. We have felt at a loss, like there is nothing we can DO to fix the issue. We do not understand elevators and are at the mercy of those who do. Dion has needed people to literally pick him up and I can’t be one of them, as I simply lack the strength. We have prayed and begged for a solution, one that as of yet has not come. Honestly, Easter is around the corner and yet right now feels terribly far away. 

I trust that at some point the part will arrive and the elevator will be fixed. Until then we are surrounded by friends and family eager to help. This is something I never want to take for granted. Community is a fundamental part of surviving hard things. My gratitude, mingled with tears, streams through the challenge.