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A Blurring of Space

I am outdoors and it is quiet, except for the sound of the bell. I don’t know where it is coming from. The air is warm and the table I am seated at is dappled with sunshine. I want to write but am struggling to coherently describe what is going on in my head and heart.

Yesterday was another anniversary of my mother’s death. We ate chips and drank wine in her honour. I decided against the suggestion that we go to her gravesite. I find it difficult to go, not because I don’t want to “visit” my mom, but because it is there I most acutely feel her absence. Instead I want to look at some of her treasures that now adorn our house, drink too-strong coffee, imagine her sitting beside me, and work out all the news that I want to share.

Though life has been uniquely busy over the last number of weeks, I have also found myself with time to be alone in deep thought. Sometimes this takes me down a rabbit hole of memories: lying on the grass beside Lake Ramsay at my grandparents’ home, listening to mom chatting and occasionally bursting into laughter; sharing chocolate croissants on a table outside of the St. Lawrence Market; stringing popcorn and cranberries for the Christmas tree; carrying ten more pounds of potatoes than we ever needed to a family gathering because she was worried there wouldn’t be enough; helping to rearrange all the precious things she kept on her hospital windowsill.

I can also hear her voice. I am certain she would have all kinds of questions about what we are doing at The Dale, how Cate is managing the loss of so many things during her senior year, and what Dion is up to each day. I suspect she would caution me about doing too much, gently reminding me that Sabbath was never intended to be optional. She would take notes on her I-Pad with her one good finger, all in order to keep each item in prayer.

Death arrived just before 10:30 pm for my mom. To this day I can easily place myself in that moment. Last night I decided to wrap myself in a blanket-like poncho that was hers. Just as I am now, I tried to stop and listen to my surroundings. It was still. I looked out the window and noticed more stars than I expected. I didn’t think that sleep would come, but then I heard the same bell that is ringing today. For a moment, the space between us was blurred. I fell asleep with renewed hope that one day that space will be eliminated.

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Feeling Her Absence: Notes on Grief

It has happened a few times lately. When asked about how long ago my mom died, I get the date wrong. Not the day, but the year. She died on May 22, 2017; except I keep saying 2018. It’s like my brain can’t comprehend that we are approaching the third year without her.

Since her death, life has carried on at a serious pace. Dion’s health has seen dramatic change, Cate has entered her last year of high school, and The Dale has seen both significant growth and loss. I have been repeatedly faced with crisis, during which I simultaneously leap into action and feel deep sorrow. It is in the ‘crisis pocket’ that I often catch time to consider the absence of my mom. But I don’t want that to be it, which is why I am exploring ways in which to create more space to grieve my mom.

There isn’t a day when I don’t think about her. Sometimes I close my eyes and imagine her death to be a dream. I can place myself at her bedside on that Victoria Day when she took her last breath and it takes my own breath away. And somehow, inexplicably, it feels like just yesterday that we were having one of our long chats. It just doesn’t make sense that she isn’t here.

My mom lived and breathed the hope that the grave would not be the end. The moment she died I envisioned her more alive, more vibrant, more whole than ever before. I give thanks for that. And I so wish it wouldn’t take death to find new life. It all feels so mysterious. “For now we see in a mirror, dimly, but then face to face. Now I know in part, but then I shall know just as I also am known” says Scripture.

Because of Elaine Clare Grant (Muirhead) I love strong coffee, toast that’s a little burnt, and popcorn cooked on the stove. I enjoy savouring food and company while sitting around a table for a long time, just as she did. I am so grateful for the way she taught me and my brother Logan to dig into our big trunk of art supplies and take the risk to be creative, for shuttling us around to piano lessons and basketball games, for supporting our choices as adults, and for loving our families. Our mom introduced us to Jesus and taught us about what it means to live in Him.

As I open up my heart, yet again, to feeling her absence, I recall the words I closed her eulogy with:

Mom, you caught me when I failed, and were always on my team. In addition to being my mom, you were my confidante, my friend, and my cheerleader. You were a good mother. I know you are celebrating with God, just as we are here to celebrate you.

I miss you already still.

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Sorrow and Love, Intertwined

On May 14th of last year my brother Logan and I went to spend some time with our mom. It was both Mother’s Day and my birthday, a double whammy that seems to happen every few years. We had a good visit, the kind that was full of shared stories and the occasional bought of laughter. Eventually I had to run off to a birthday dinner, but not before mom had the chance to point in the direction of her present to me. She was a great gift-giver, even when it required buying things on-line from her hospital bed.  That day she gave me a sturdy blue and white striped canvas bag, one that she hoped I would fill with things like flowers, baguette, good coffee beans and of course, chips.

I had no idea at the time, but that would be the last opportunity I would have to chat with my mom. I heard from her on the 17th via an email filled with family news, and gratitude for our visit. On the 19th we got the call that she was not okay. What transpired next still feels a bit like a dream, though it was all very, very real. The doctor carefully and sympathetically told me and Logan that we needed to bring together family and friends because the end was near. A huge group held vigil throughout the weekend. And then on Victoria Day, surrounded by her immediate family, Elaine Clare Grant (nee: Muirhead) took her last breath.

Nearly a year later, I find myself struggling to cope with the way my beloved mother’s death, Mother’s Day, and my birthday have all become intertwined. I suspect the acuteness of this will soften with time, but for now, on the eve of this first anniversary, it hurts. For the majority of yesterday I did a little better than expected. I looked at Cate and marvelled that I get to mother her; I was greeted by multiple people at The Dale as “Mom”; I felt safe to acknowledge how complicated a day like Mother’s Day is for so many people, including me; I thought of the many mother-figures I have in my life; Dion and Cate took me out for dinner. It wasn’t until the later evening that I started to panic: how can the day be almost done and I haven’t seen my mom? Of course I knew the answer, but as Joan Didion so aptly wrote in her memoir, it’s the kind of magical thinking that happens after someone dies.

The long and short of it is this: I miss my mom. Nearly every day I think of something I want to tell her. In all of the ongoing challenge of life (and there is a lot), I long to hear her voice offering comfort, wisdom, and love. She understood. I also know that as a result of so many years of persevering, mom was weary (though she never complained). It is a relief that she is no longer bound to a bed or wheelchair. Mom’s faith sustained her in life and promised her so much beyond it. I like to imagine her walking, maybe with a striped bag on her shoulder like the one she gave to me, filled with things that she loves. As Mother’s Day 2018 drew to a close, imagining her smile made me do the same.

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How Both a Little and Big Hello Matter

One of the greatest gifts my mom gave me was her ability to be fully present. She had a way of actively listening and engaging in conversation that always made the time with her go too fast. I think this was only magnified when she was forced to move into hospital. Though hindered by fatigue, mom wanted to maximize her time with people. I know it was difficult when her health issues prevented her from visiting. Though she had a large capacity to manage a lot of alone time, mom thrived when with family and friends.

I miss my mom. I live around the corner from the hospital she called home. Every single time I go by it I look up at the window that was hers. Part of the beauty of living in such close proximity was that it was easy to pop over for a long OR short visit. We sometimes joked that a side benefit of her situation was that I always knew where she was. I often replay the journey to her room in my head: through the front doors, straight to the back elevators, up to the fifth floor and room 516, where I would announce my arrival in the doorway with a “hello, it’s me!” to which she would always say, “hello my sweetie”.

My mom loved to ask questions about everything that was going on in my life. I know that she kept a running note of things to pray about on her iPad. We laughed a lot. I would listen to all of her news (she was a great storyteller), sometimes as she directed me to do things around her room: dust, reposition a painting, open mail, tidy up one of her ‘meaningful piles’. I routinely cut her bangs, and with much trepidation occasionally gave her a full haircut.

My mom was gracious even when I failed to visit because life got too busy. I was never made to feel guilty. Instead, she would gently issue another invitation to come and explain that she missed me. I also knew that if mom was feeling especially lonely and willing to articulate it, I needed to take notice and get to her side, which in truth, I always wished I would have done before she even had to say it.

For my mom it was important that I show up even for just five minutes to have, as my nephew Harrison likes to call it, a “little hello”. No matter what length of time we had my mom would say she felt energized and I would leave feeling filled up. It was a great reminder to me that making time, even by setting aside little bits of it, contributed to both of us feeling valued and loved.

As I grieve and celebrate my mom, I want to remember the many lessons she taught me: lessons about the gift of presence, active listening, good storytelling, being honest about your needs, and how to infuse it all with grace.

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Cate with my mom, her Gran. They loved being together.

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How She Made Me Feel

I must have been two, maybe two and a half. My mom had taken me to the park at the end of our street and then popped into the little corner store when it began to pour. As I sit here listening to the rain I can remember how she ran, pushing me in a stroller, the whole block home. We were soaked. She wrapped me in a towel, put on a Judy Collins record, and gave me a snack. She tried to dry off the monkey that I carried everywhere (and later tragically lost at that same park). I remember sitting in her lap on the floor. I know to some it might be surprising that I would have this strong memory from such a young age, but I actually have many.

I remember my mom walking me back and forth from school when I was in kindergarten. She let me invite my friends over for lunch, heating us bowls of noodles and making sure we had cut up carrots and cucumber too. She encouraged me to play outside and taught me to identify flowers and trees by name. We planted marigolds and lily of the valley and my favourite forget-me-nots in the backyard. When my first fish died she helped me bury him in that same garden bed. At night my mom would sing me Edelweiss from The Sound of Music, one of the songs I chose to sing to Cate every night of her early years.

As I begin the long and winding road of grief, it is memories like these, little moments in our shared life, that keep coming to mind. Maya Angelou once said, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel”. Memories of my mom do include what she said and did, but what reverberates in my heart is how she made me feel. When I remember her tending to my many skinned knees, it is her tenderness that sticks out. When I shared my anxieties and troubles with her, she listened and somehow managed to make me feel like things would be okay, even if they were to continue being hard. I loved being in a room full of people and picking out her laugh. Knowing she was close by made me happy.

I think why the memories I cite here remain so vivid is that they all leant to me feeling safe: being pushed through the rain, walked to school, having my friends welcomed, being taught how to both garden and grieve, hearing lullabies at night. She was a very good mother. After my aunt died, my mom spoke of her own grief for her sister and how even the best memories were difficult at first. I understand what she meant, because the flooding of recollections serves to make the absence even more real. Comfort is also found in choosing to remember. I can take myself back to that rainy day, and many others like it, where I could sit safe in the lap of my mom.

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A Life That Was Good

My mom died on Monday night. This is the first time since then that I’ve been compelled to write something here. I know that many of you met my mom Elaine on the pages of this blog. She has always, and will continue to be, one of my primary sources of inspiration. She was an incredible woman.

Last Friday night (technically very early Saturday morning), I was woken by a call from my brother Logan. The hospital needed us to know that mom had taken a sudden turn for the worse and we should come. I got dressed and walked to meet Logan, because we amazingly live just one block away from each other on the same street, and just minutes from the hospital. Having received calls such as this before, we could imagine what to expect, and that proved true again: mom had an infection that was causing a high fever, her blood pressure was dangerously low, and she was non-responsive.

Mid-morning Saturday Logan and I spoke with a doctor who advised us that mom had pneumonia and likely an empyema, a serious accumulation of infection that would require more than antibiotics to deal with. Mom however was too weak to manage any invasive procedure, and so we were gently, and very compassionately advised to call together family and close friends.

What ensued over the course of the weekend was what I would describe as beautiful, precious, and deeply sacred. Mom’s grandchildren Cate, Oliver, Harrison and Teagan came, along with Dion and Amanda. My mom’s sisters, brothers-in-law, many nieces and nephews and long-time friends joined us so that we could all be together. We filled mom’s room, flowed out into the hall, and spilled into the nearby sitting room. Hospital staff commented repeatedly at our presence, moved that mom had so many people who loved her. The doctor came to me later saying, “you were right when you said people would come. This is amazing”.

Cate brought her ukulele and sang song after song for her Gran. My cousin Kate sang A Life That’s Good…”at the end of the day, Lord I pray I have a life that’s good. Two arms around me, heaven to ground me. And a family that always calls me home”. Teagan and Roy, the two babies of the family got passed from person to person, offering sweet distraction from the sadness. Joanna was always nearby. We held times of prayer around mom’s bedside, including a late night vigil where we sang songs and hymns. We told stories, laughed, and wept, sometimes all at the same time.

I slept beside my mom on Sunday night. Though she lived in a hospital room, mom managed to make it a home, something I was again struck by as I lay there looking at pictures and her collection of sentimental things. When I woke up in the morning I decided to play mom’s playlist of favourite songs from her iPad. As I listened to the words of the top song, “Hold on, if you need to hold on, you can hold on to me. What ever road you’ve chosen shouldn’t be walked alone. Hold on”, I thought about how she had done just that for so many years. Mom clung to Christ though the road was hard.

Monday evening I decided to go home for a brief break. I ate a bit of food that a friend had generously dropped off and got changed. As I was finishing up, my phone rang. It was my aunt saying death was suddenly close. I ran all the way to the hospital, praying that I would make it. As I got closer, Victoria Day fire works started to shoot off in front of me, and I became even more overwhelmed. I did make it. At approximately 10:25 pm, surrounded by family, mom breathed her last breath. We remained with her for a while, even toasting her with wine served in styrofoam cups (all we had) and eating chips, two things that she loved, and always together.

We had a funeral and burial yesterday. As a group we hovered around her grave for a significant amount of time, her grandchildren and grand-nieces and nephews playing with each other. I kept imagining her sitting there, happily tucked in to her wheelchair with a huge smile on her face. She loved being with her family and so this felt like an appropriate book-end to the last week, one that started and ended together.

Mom, I know you are no longer bound to a bed or wheelchair, a truth that makes me smile. And I can’t believe you are gone. I began to miss you the moment you left. I took the photo below of the view outside your window on Monday. You would have loved the sunset. I know life was hard, but at the end of the day you always thought it was good. I love you, always.

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Advocating Against My Mother’s Displacement

My mother, Elaine Grant has lived in what is now called Michael Garron Hospital (formerly Toronto East General Hospital) for eight years. The Complex Continuing Care Unit, or “J5” is her home. Approximately two weeks ago everyone on J5 was informed that the unit is to be closed. In other words, all of its residents have to move. We are devastated. My Mom has described the feeling as “living in a nightmare”. I want the hospital’s upper management and the Ministry of Health to hear our story because their decision, which at least appears to be rooted in saving dollars, impacts real people with very complex needs.

My daughter does not remember her Gran being able to walk. She is turning fourteen. This is because in 2004 my Mom had a benign tumour removed from the base of her brainstem. We were warned that this surgery threatened to do what the tumour might if left alone. With time we could see how this warning proved true: Mom lost her gag reflex and so is tube fed, has a tracheotomy so that her lungs can be routinely suctioned, and is paralyzed. Over the years, including as recent as this spring, she has struggled with infection that leads to the need for intensive care and ventilator intervention.

In the letter that we received from the hospital and at a recent family meeting, we were encouraged to consider moving our loved one “into the community”, meaning a home situation supported by CCAC. Hear me when I say, had home care ever been a feasible option, we would have pursued it. However, my Mom’s level of acuity is such that a hospital setting is her only option. Even nursing homes do not offer the care that she requires. And just so you know, my husband’s Multiple Sclerosis is forcing us to equip our house in such a way that will enable us to stay in it for as long as possible. We believe in the value of CCAC.

The move to J5 eight years ago came after a long wait. After two years we were told the waiting list was to be scrapped. This resulted in a letter to our MPP and weekly phone calls to the hospital social worker. At the time we understood the need to close a waiting list. What we could not comprehend was cutting off those who had been patiently and exclusively waiting for a bed at Michael Garron Hospital. You see, my brother and I, along with our families, live around the corner from the hospital. In many ways moving to J5 was a move “into the community” and very much for the mental health of our Mom. And so, we actively chose to fight in a kind and persistent way. With this new situation, we plan to do the same.

Michael Garron Hospital is currently moving a number of fully ventilated patients onto J5 from Sunnybrook Hospital. So in that sense, it is not really closing. There is ample medical evidence that my mother is a patient whose needs match the requirements for hospital care. We know there are facilities across Ontario that provide Complex Continuing Care, but we need to be near her.

Elaine Grant is a woman of compassion and grace. Despite her massive chart, she is an exceptional patient. If she has concerns about her care, she addresses the issues carefully and in writing. I would completely understand if she were to complain about the weight of her challenges, and yet she never does. I am inspired by her. This might not be surprising given that I am her daughter, but if you would like to hear similar sentiments from people maybe more removed, I could provide a very long list of references. The truth is this: my mother is not a nameless, faceless statistic. Elaine Grant is a person with real health vulnerabilities who should not be displaced. She has suffered tremendous loss, but losing her home should not be added to that list.

 

 

 

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Aroma Buffet

My Mom lives in complex continuing care at a local hospital. About a decade ago she needed to have a brain tumour removed and has called various hospitals home since then. The surgery took away much from my Mom, including her gag and cough reflex. This loss means not being able to eat food via her mouth.

Think about it: my Mom never gets to taste anything other than a bit of toothpaste. Though I feel close to this reality, I still can just not imagine.

My Mom is occasionally able to come over to our house, usually for visits that last an afternoon. She lives just a couple of blocks away from us, so she always keeps a close eye on the weather reports to see if riding in her wheelchair over will be possible vs. taking a special cab. This Saturday promised to be beautiful, so we decided it would be the day for our traditional Easter dinner of ham and scalloped potatoes.

Given that my Mom can’t eat, you might wonder why we would plan a feast that would coincide with her visit. The reason is twofold: my Mom loves to visit around a table and she loves to smell. I spent the morning cooking with this in mind. We affectionately call it creating an “aroma buffet”. Once we settle around the table I put together a plate of food that I then pass under my Mom’s nose. I always wonder if it just makes not being able to eat more difficult, but she always happily takes a deep breath.

They say that when you lose a sense the other senses are heightened. There is something incredibly moving about witnessing my Mom’s willingness to participate in meals in a different way now. I hope that her sense of smell somehow helps to compensate for her lack of taste, even if it is just a little. Though I can still take food into my mouth, I want to learn to deeply appreciate my nose. I don’t want to take being able to eat for granted.

Bring on the aroma buffets.

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On the Mend

When I walked into the ICU today I was greeted with my Mom’s usual smile and a strong, “hello sweetie”. Yes! She’s back!

She will remain in ICU for now, which is really the best place for her to be monitored and cared for closely. Once the tests show that the infection is under control (which is likely soon) she will return to her room, just three floors up.

I had the opportunity to read aloud the blog I wrote entitled “My Mom” to her today. I didn’t get through saying that title before crying. I wept throughout the reading, so grateful that she could hear how loved she is.

My Mom was pleased to be described as one that “lingers”.

That she certainly does.

And I’m thankful for it.

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Right Now

Right now:

I am a muddle of thoughts.

I am trying to not be worried about my Mom and admittedly not doing a very good job. Yesterday was a harder day for her. She remains in ICU. We covet your prayers and healing thoughts.

I am considering everything that needs to be done at PNC. It is a challenge to prioritize tasks when everything is important…we need the door, but the door can’t be hung without hinges, and the hinges need to be screwed into the wall and the wall needs to be repaired..whew!

I am thinking about Cate’s big Ice Show. Tonight and twice tomorrow she will don her figure skates and green outfit (her number is called “Seaweed”). I know one of the things she is most looking forward to is the Grand Finale, when all the skaters roam the ice and hope to have flowers tossed to them. Dion and I will have a bouquet in hand.

I am grateful for the way my almost four-year old nephew Oliver prayed for his Gran last night: “thank you and make Gran feel better. Thank you and give her medicine”.

I am continuously pondering what it means to be thankful in all things. And at the same time be willing to talk about what’s not right in the world and to seek after justice in a humble, merciful way.

I am preparing for a Community “Town Hall” Meeting at PNC on Monday after our lunch (if you are reading this know that you are welcome to join us! Lunch is at 1, the meeting will start shortly thereafter).  We are going to talk about the changes that PNC is facing and brainstorm together about our future. I am excited about the ideas that are brewing and being batted about already.

I am listening to Mumford and Sons and loving this lyric:

And there will come a time,
you’ll see, with no more tears.
And love will not break your heart,
but dismiss your fears.
Get over your hill and see
what you find there,
With grace in your heart
and flowers in your hair.

I am recalling listening to Joni (pronounced John-ee) Eareckson-Tada speak at a conference years ago. Joni is a woman who, at a young age, dove into shallow water and broke her neck. She has lived in a wheelchair ever since. I have always been struck by the glow she has about her as she talks about her life, her faith and her hope. In fact, she reminds me of my Mom.

I am doing my best to lose the muddiness in my head and again choose to be in the moment.

Right now.