Author / Julie

by Julie

A Life Lived

April 8th, 2018 my incredible maternal grandmother, Goldie Irene Wilkie-McMillan passed away at the age of 90.

It’s important to share this with you, because she embodied a life lived. Time well spent on this earth. Time not wasted. Her life is one to be shared.

As I reflect on who she was to me, and observe who she was to others and think about the lessons she left behind, I am only now realizing the incredible gift she left for me.

I sent Goldie flowers on her 90th birthday. I felt close to my grandmother, but hadn’t seen her since Kate died. She drove 14 hours to Ottawa with one of my uncles, my aunt (and godmother), and my closest cousin to be here for Kate’s memorial. It meant the world to me. And it didn’t surprise me. Of course she would come. She wouldn’t think twice and she knew it was the right thing to do.

In that crazy early period of grief, I spent little time with her during that brief visit. I was in shock and I was in a strange place of just getting through that day. I can’t remember what might have been said between us. I wish we would have had more time. I think I would have taken a lot of solace in just being with her.
In the couple of years that have followed, I have only spoken with her a handful of times. There were really no words I could say, and there were none I wanted to hear. Distance was difficult for me. I didn’t have the strength to have conversations over the phone. Even just to say hello. The physical distance contributed to emotional distance.

That makes me sad. Not regretful – honestly – as there was nothing (is nothing) I can do about the fragility I still carry when it comes to trying to bridge emotional gaps with the people who love me.

It makes me sad, because I’ve missed her.

Goldie was our family matriarch. There is now going to be a huge reshuffling of the family structure to determine how we’ll sort ourselves into a new existence and relationship with one another. She was the hub and we – her children, grandchildren and great grandchildren – were the spokes. She was at the centre of our family, and we all felt it and knew it.

She was a strong physical and emotional presence to all of us. You couldn’t share your secrets with her, as she’d tell everyone, but you could rely on her for anything you might need. She loved fiercely and without compromise. Her hugs were crushing, and the strength of them made you actually stop and wonder if she might ever change. She felt like the sun – she was warm and comforting and strong.

Goldie cared about her family and her community. She was unflagging in her determination not to be slowed down in any way.

She was married to my grandfather for their entire life together, and then married her second husband like a giddy schoolgirl at the age of 85. She made no excuses for her plan, or timing, or that massive diamond on her finger.

She rode motorcycles.
She travelled.
She loved to visit and be visited.
She snuck treats and sweets to her grandchildren despite protestations from her adult children. And she continued the tradition with her great grandchildren.
She ‘rescued’ us when she thought we needed her help.
She protected us.
She had 5 children.
She is a bereaved mother.
She loved HOT tea. (Really hot).
She would cuff our ears if we misbehaved and would forgive us just as quickly.
She never forgot our birthdays.
She loved to laugh, and had a quick wit.
She did not compromise and made no excuses.

She was fierce in the most amazing way.

My grandmother called me the day after her 90th birthday. It was the evening of April 9th. She left a voicemail thanking me for the bouquet of flowers I had sent her. She made over 30 calls that night to her children and grandchildren thanking them for her birthday party and gifts from the day before.

My mother called me at 6:30 a.m. April 10th. My grandmother had a massive stroke earlier that morning. She would not survive and would be taken off a ventilator once family had a chance to say goodbye. I received a text later that morning from my father to let me know she was gone. I left the meeting I was in and cried alone in a hallway, and called my mom. I wasn’t grief stricken, but I felt the immense loss of her presence and I was sad.

On April 12th, my own birthday, my grandmother’s birthday card to me arrived in the mail. She must have mailed it the week before. She had a little black book with our birthdates in it. She never missed one. I still haven’t opened it.

I was at her funeral April 18th. I flew to PEI to be with my entire family for the first time since Kate had died. I thought I would feel regret that I hadn’t seen Goldie since Kate’s funeral. I didn’t feel that way. It felt right to be there for her, to say goodbye to Kate’s namesake. Kate’s middle name is Irene, just like her great grandmother.

Lives well lived are inspirational. Goldie left me with the gift of possibility. She endured the same tragedy I have, the loss of her daughter Sandra in childhood. How she lived her life so richly and fully in that aftermath is something I am sure I will never fully understand or achieve, but she’s left that message that I carry her DNA and may have some of her strength. I value that gift. I am newly inspired by her strength.

I’m not sure how I picture what happens after life – after death. I know there is something, because I feel Kate’s presence every day. I wonder if there is truth that Goldie is now ‘with’ Kate and Sandra. That they are now the recipients of her epic bear hugs. I hope it is.

maybe.

And even if it is not entirely as I can picture it, I trust that her energy and spirit is impacting us all in someway. Wherever we are.

 

Miss you Gram.

by Julie

April 2018

It was my birthday last Thursday, April 12th. 

I was born April 12th, 1972.
I’ve achieved Level 4.6

There is something about birthdays, anniversaries, special dates that weigh heavily on families who are bereaved. It’s a melancholy time for me. 

I sense these special days coming days before they are here, like a persistent pressure in the back of my mind, pressing on my soul, reminding me that time is passing and I am further from the life we lost. Keeping me awake at night and reflective during the day. Memories both flooding and simply ebbing and flowing across my mind’s eye.

These dates, which are supposed to be celebrated, aren’t fun for me. I simply want to turtle (see my Turtle Turtle post for context) and hide away from them. Let them pass with as little fanfare, recognition and drama as possible. I try to numb myself a little. It hurts to know that I am growing further away from where she and I existed together. The additional turn around the sun is as painful as a burn on my soul. It heals over the year, but I know it will come back around again.

At the same time, in a strange way – and not morbidly – I know I am closer to being with her. The passage of time is a comfort in a way. I am closer to a time when I’ll be reunited with her.
I don’t want that to sound strange to you. Or cause you to be scared or worried for me. It’s simply a feeling, but it is real and it brings me some peace to be honest, without wishing my life away.

I have always held my birthday a little sacred. My birthday is my personal day. I always booked the day off work and set my sights upon doing something I had never done before. It could be as simple as a new running route, a significant vacation, or something new to experience. I set that goal of a new experience to remind myself to try and ‘seize’ life as we are often counselled to do. To “live life to the fullest” (no pressure there). I wanted to remind myself that life is vast, and to remind myself to ‘experience’ it.

It’s amazing to me now how limited experiencing something new is. It really doesn’t matter, and it really didn’t make a difference for me.

 

My 43rd birthday was spent in isolation with my very sick child after her bone marrow transplant, separated from my 10 year old, far from home – scared and exhausted. That was an ‘experience’. Did it mean I was living life to the fullest? It made me realize that simple, same, routine were also valuable and something to be cherished.

To be honest, some days living life to the fullest for me is as simple as getting through the day.

Nonetheless, I have continued with that tradition of a day I devote to me, and I don’t feel any pressure that it has to be particularly spectacular. It’s just a day where I do what I feel like doing.

And I’ve continued with the tradition of doing something new. A challenge to myself to keep moving forward and to try and find a space where I can exist on these passing birth dates with a little bit of inspiration or maybe it is just habit. 

 

I’m an Aries – first sign of the Zodiac, described as “continuously looking for dynamic, speed and competition, always being the first in everything”. 

At least that’s what you find when you google Aries. I think I still carry some of those fire sign characteristics, but the edges have been worn down for me. Like the ocean against the rocks. Not dulled, but softened by a unique and inconceivable perspective, and the strength of repetition and reality of forces greater than those I can control.

I work hard. I have high expectations. I am determined. But my perspective on life and what is important when it comes to “speed, competition, and being first” is quite different. It’s not something you can learn. You have to experience profound tragedy and suffering to understand. 

I am a curious life spectator. I watch others from my bubble with a curiosity I did not have before. I find myself observing with jaded interest what others find to be important and where they place their energy. Their conversations are a curiosity to me and often feel alien to my ears, like I can’t absorb or understand what they are saying. My senses are a little numb but also extremely heightened from that constant erosion from the waves of grief. 

Intensity is not the same for me as it is for others, and my ability to sustain it has changed. I sometimes feel a need to let others know what I am sensing, feeling, understanding and then realize it is impossible. The few who understand, who are capable, are a select secret society that no one on this earth would ever want to be a member of.

They understand what it feels like to circle the sun without their child by their side. They understand devastation and that pull of not wanting to be here contrasted with the visceral need to survive somehow.

Maybe there is an ‘Aries light’, or ‘Aries eroded by tragey’ zodiac sign?
Maybe my Aries spirit is what is keeping here and moving forward?

 

I did do something special on my birthday. Something I’d planned for a special day on my calendar. A tattoo of Kate’s name, in my own writing, on my left wrist. I wanted it there so that in prayer Kate would be at my heart centre, where she exists every moment of every day for me. That when I brought my hand to my heart, she would be with me.

I never imagined I would have something so permanent on my body. I am not the ‘tattoo’ type, and that is not judgement, it was simply not something that was necessary to me. But I felt a need for permanence and for closeness and proximity. It comes with the intensity of grief and the denial that exists within my  heart and soul everyday. I resist that she is gone. I wish her back.  I want her close. I want to feel her. This permanence of black and pink ink was a simple way of fulfilling that somehow. It’s intensely personal for me, and very public. The burning pain to place it felt – right.

Just the way Kate and I lived our lives as daughter and mother. 

 

Happy Birthday to me.
Level 4.6 achieved.
I wonder what is next and how this life of mine will evolve. At the same time, incredulous and a bit angry? disappointed? resigned? that life continues to move forward and my turns around the sun continue. That people live and die and we notice, but it is fleeting. That we are all striving for a sense of permanence.

Interesting, it has become not as important for me this need for permanence for myself. 

Wanting to achieve more. Wanting to slip away at the same time. Desiring permanence and impermanence at the same time. 

A tattoo of my daughter’s name on my birthday.

 

Kate’s last birthday. She was turning 7 and waiting for her ‘princess birthday’ guests (including Cinderella) at the door

Kate waiting for her birthday guests.

Julie

by Julie

Year 3 Day 0

March is a tough month for us.
On this day three years ago we pushed a button to start an infusion of stem cells donated by Jack to his sister.

I haven’t been sleeping the past several days. A friend’s message letting me know they were ‘thinking of me today on Day 0’ was the trigger to understand why my sleep hasn’t been great, why I am repeatedly reviewing in my mind what happened to Kate, and why my mood has been low. The body remembers trauma, and my mind is still coping with what we experienced with Kate.

The week leading up to Day 0, and Day 0 itself are weighed heavily in emotion. In the world of bone marrow/stem cell transplant, Day 0 is referred to as your “re-birthday”. I’m going to share the story of that day here for the first time. It won’t be emotional. I can’t go there. It is the narrative of what I remember.

———————————————————–

Kate had already been through a week of intensive preparatory chemotherapy to ablate her bone marrow and prepare her for this transplant. Even writing these words now…the fear and anxiety I felt that day push to the surface. It’s an overwhelming feeling – which makes me question why I am writing this.

What I want to share is how we experienced that day. Something that isn’t recorded in a chart anywhere.

The bone marrow transplant team had clearly done this time and again over the years. The mood they set in the room was one of celebration and excitement. I tried to play along as we typically do as parents. You want to engage with your team and show you understand what is happening. You fear showing emotion, or the wrong emotion. So I put a smile on, though I felt confused and scared and had an odd sense of dread mixed with what I can only describe as hope. I wondered if we should be taking a different approach and if I could ask questions, but the train seemed to be rolling and I felt like I had to get onboard.

Maybe if I caught some of their positive energy I would feel better?

The day had already been beyond intense and emotionally draining. Kate and I had been through a week of getting used to living in full isolation, while she was being infused with chemotherapy agents to prepare her for the transplant. The days were long with an energetic little girl enclosed in a room that was 12×15 with a few toys and stickers to entertain her. I was not sleeping much at night as I got used to the lights it the room, the noises of the machines, the nurses coming in and out, and of course waking often with Kate to support her through nausea and diarrhea.

I was worried about her and how this transplant would go. We were getting used to all the new faces of nurses and doctors we were working with. I was quickly learning all the medical terminology in both english and french. We were trying to find a routine in our days. I was already very tired.

12:00 p.m.

Earlier that day I had escorted a very brave and scared 10 year old into the surgical unit to donate his bone marrow. Out of respect for Jack, I will not share details of that experience here. He was incredible and I was devastated with emotion. I am still in awe of him.

They did not let me greet Jack in recovery. He was not placed on the same floor as Kate (as had been promised us). They were separated by a couple of floors. He had very bad nausea as he recovered from his anesthetic and I was not able to be with him – we had to send his aunt instead. 10 years old and his first time in a hospital as patient.

I remember feeling torn about which child I should be with. Who needed me more. Who was more vulnerable. Jack hated to be alone and had significant separation issues. Kate did better with whomever she was with, but I was concerned about her and how she was coping with her infusion. She was the more fragile of the two.

2:00 p.m.

As I sat in Kate’s room, wondering how Jack was doing and trying to text with his aunt for updates, the transplant nurse came into the room. She had a massive 1 litre bag full of blood in her hand. Holding it up, with a huge smile, she said “Look at this! Isn’t this great”. I looked on, feeling anxious and scared, and asked, “What is that?”. She replied, “It’s Jack donation”.

In that moment I felt this rise of dizziness and horror. “What did you do?” I said. I didn’t understand the volume of stem cells they would be taking from Jack. I hadn’t processed what that might look like. It looked like he had been drained dry. No one had prepared me for that. I was separated from my little boy, I hadn’t even seen him yet, and had no idea how he was doing. I looked at that bag of blood and thought, “What have I done”.

(I did recover from that moment. I got a better understanding of the procedure and that this was a good volume and Jack was stable. I also realized how naive and unprepared I was for this procedure and what was to come).

Late evening Day 0

I eventually made my way to the other floor to be with Jack. After pressing the infusion button for Kate, it seemed that she would be fine and Brian could stay with her. I was reassured by the nurse that stem cell infusion was pretty inconsequential.

I was worried about Jack with his nausea, and chose to sleep in his room. Unfortunately sleep didn’t happen as he was in a shared room with another child – and another ‘sleeping’ parent who snored so loudly I could not get to sleep. I asked the nurses for help or a rearrangement of rooms. I told them I really needed to sleep. They said there was nothing they could do (and of course there wasn’t). They offered me another room to sleep in away from both of my kids. I didn’t choose that option.

I am glad I chose not to sleep elsewhere. That night a nurse entered Jack’s room. I woke to find the nurse preparing to poke Jack – to draw blood or infuse something, I wasn’t sure. I intervened before Jack was poked. It turns out the nurse had the wrong child. The intention was to take blood, but Jack was not the patient. This type of thing happens often in hospitals. It is the unacknowledged role of parents/caregivers to catch situations like this before they occur, despite policy and procedures in place. After over 7 years of caring for Kate in hospital, I was well aware of the need to be vigilant. It also reinforced for me that Jack could not be alone. No one said anything to us about the incident.

Meanwhile in Kate’s room

The team encouraged us to take pictures of the ‘moment’ when we pushed the button on the infusion pump.
Kate looked around – her mask on – her hair in cute little ponytails – her torso naked. She was also confused, but used to being compliant. She seemed to be trying to understand the energy in the room and was trying to take her cues as to what was happening from us. She was so innocent.

The large bag of stem cells hanging from the IV pole.

We posed for a picture. We posed with the team and Kate for a picture. We smiled. Someone gave the thumbs up. This was supposed to be a good moment, an exciting one. The transition from fearing SIFD and the catastrophic effect it might have on Kate, to pushing through the other side and finding a place of better health and a life journey that should be less impacted by this disease. In that moment, I’m not sure I believed that would happen. But the moment had already come and gone and the decision was taken. It was a horrible and helpless feeling wrapped up in trying to be brave and hopeful.

That moment, the confusion and doubt, started a seed deep inside me that planted doubt and regret. Even if this went well, I knew I would regret this choice. These are words I never shared with the team.

While I was downstairs with Jack, things were not going well for Kate. Brian began texting me and telling me she was not doing well. Her blood pressure was sky rocketing. Kate was clearly in pain. The nurse was less than helpful – she seemed to be unsure of what to do. Unfortunately it was one of the nurses we were least comfortable with and had a challenge communicating with because of the language barrier.

I decided to leave Jack briefly and go to the bone marrow unit to see what was going on.

Kate was writhing in Brian’s arms. He had that look of desperation, fear and frustration on his face. He didn’t know what to do and he didn’t know what was happening. He was just trying to cope. I realized he had not been in hospital with us very often, and this was his first experience on the floor in the bone marrow unit with Kate. I understood that look on his face. I felt it too, but at least I had been there with Kate the previous 10 days and was maybe a little less disoriented. I felt so sorry for him. I also felt frustrated that he had let the situation escalate to this point and that Kate was in so much pain. It was totally irrational to blame him. The nurse and staff should have been in better control and addressing things sooner. I was used to taking control and knew Kate so intimately. I likely would have realized sooner something was not right. I couldn’t blame Brian for that. I was blaming myself.

The nurse was there but not doing anything that seemed to be addressing the situation. We asked for the team to be called, but it was late at night and they were not available. This also hadn’t been part of the plan as the infusion was meant to start earlier in the day to allow for better observation and the team being available to address any issues. I’m not sure who came, or who the nurse consulted, it may have occurred over the phone, but the infusion rate was adjusted – more than once. We asked for pain medication for Kate,  morphine was prescribed and she settled a bit. It was an extremely long night and not the ‘basic infusion’ we were told it would be. We were trying to pull on all of our experiences with Kate to figure out how best to support her – we were poorly poorly equipped for that experience. It was not a smooth situation for anyone.

The next morning, Jack was up and feeling better. He was discharged and able to come and see his sister. We were grateful that there were no restrictions on him visiting – something we had been very clear about before we agreed to the transplant. Jack visiting Kate and being with her was not negotiable. To be honest, I was so proud of how vigilant he was with hand washing, putting on his mask and gown and understanding isolation and infection control  protocols. Institutions that arbitrarily separate siblings have a LOT to learn.

We were all exhausted from the long and wakeful night. Kate was not feeling much better the following morning. Her blood pressure was still very high and never settled to her baseline.

Day 0 and all the emotions that went along with it came and went.

Day 1 had begun.

by Julie

I Wonder

Jack has been wanting to watch the movie ‘Wonder’. We read the book together years ago. Bedtime reading was a regular routine of ours after I had Kate settled and into bed. It was a time for me to have time with Jack. I loved reading as a child, I loved reading to my kids.

If you’ve seen the movie ‘Wonder’ or read the book, you’ll know all about the main character Auggie who had Treacher Collins Syndrome. I have views on the casting for this movie, a story about inclusiveness, the judging of others, compassion for one another, where the lead character is a ‘typical’ child who sat in a makeup chair for several hours a day. Jacob Tremblay, the actor who plays Auggie Pullman, does an amazing job – but I ‘wonder’ if a child with Treacher Collins Syndrome might also have been equally amazing.

This was not the point of this post – but something I wanted to share.

The point of this post is the secondary story in the movie, the story of Auggie’s sister ‘Via’. She is an incredible big sister by all accounts. A champion of Auggie, a confidante, a cheerleader – she’s stoic and she knows that the needs of her brother supersede hers. He has greater needs, that are often more immediate. It’s just that simple. And this affects Via deeply, particularly when she is going through her own teenage issues and has that basic need of time and attention from her parents. Her parents are distracted and they are simply not available to Via. As you watch Via try to cope on her own, if you are a parent who understands that dynamic of caring for a medically fragile or complex child, your heart breaks for her with the knowing.

As ‘Via’ tells the story from her perspective, my eyes welled with tears. “Is this how Jack felt”? He was three when Kate was born and toddlers typically take a back seat to their infant siblings out of short term necessity, but often the balance is righted again eventually. That never really happened for us, or Jack. Kate’s health, mini-crises, big crises, changes in her needs, were all consuming.

Jack had access to many things, he had friends, I arranged playdates, he played sports…but it was different. The expectations around independence were different. I was often gone unexpectedly with Kate to the hospital – sometimes leaving for the ED in the middle of night. I was there with Kate over his birthday and Hallowe’en… Mother’s Day. Special days when that connection with your kids is so fundamental. Jack had to help a lot more than would be typical. He did a lot of the work of a caregiver to support me in helping with his sister. He understood this and he never questioned. It was normal to him, and as he grew older he took on more and more responsibility – often unasked. I also don’t ever remember it being an issue, but now I wonder if it was having an impact on Jack that I wasn’t aware of – or didn’t have the time or energy to attend to.

I know I am not the only one in this. It’s a common worry – a valid one – of many families with medically complex kids in their lives.

Our family settled into a life of revolving around Kate. She took up so much space in our lives. It was out of necessity. To take a line from Wonder, she was our sun and we were planets orbiting around her. 

Was I there for Jack? Was Jack a Subplot?

I’m not sure. I think I was. At the really important times, but did I pay careful attention, did I miss critical points to support him?

Recently we attended an event in Kate’s honour as a family. The boys did not want to be there – especially Jack. I thought it was important (I still do) that we were there together. But now I wonder if Jack needs to spend that time still orbiting his sister and her memory?

There has certainly been a lot of attention on Jack in the past while, but it has taken time. I was not a very functional mom for some time after Kate’s death. Jack is still vigilant of my energy, my sadness, my ability to get through the day. He watches his dad too. I know it, and it saddens me that this boy is still accommodating others so much. I am trying to teach him now that he can put himself first, he can advocate for himself, and that we are there for him. We are fully present. He is our priority.

Wonder has many messages. Powerful ones about what it means to be a friend, and what it means to have true strength. Auggie is the hero of the story, but when I watched it my eyes were on Via.

Julie

 

by Julie

November 30th

Every night, before I went to bed, or even in the middle of the night if I had woken, I would check on my kids. Go into their rooms and watch them sleep for a moment. Hear their gentle breathing and sometimes put my hand on them to feel their chest rise and fall. Then I would settle back into my own bed and have a sense of warmth, safety, comfort, and feel that all was right with our world. If you can do this, you should.

 

Kate died on this date 2 years ago. I watch it creep closer on the calendar and I both wonder and dread what it will feel like. And now it is here. It’s a Thursday (not a Monday). It is cold and crisp outside. It’s a bright sunny day. Cars drive by. Kids walk to school. Brian has already left for the day, and Jack is off to school. The world keeps turning, and I ask myself the same question I ask every day – how is it possible that the world keeps turning?

My mind slips back to the few days leading up to Kate’s death, and as last Friday, Saturday, Sunday, Monday came and went, I found myself reliving and remembering the events that led to November 30th, 2015. I didn’t greet those memories and let them in, but I also didn’t try to shut them out. They are there and they were simply surfacing. I acknowledged them, and let them come and go. I may have even shared one or two in a trusted space.

There is a term used in the bereavement world called “grief bursts”. They are short periods of intense grief and sadness often brought on by a memory; auditory, visual, smell, touch. The feeling is intense and overwhelming. That would be the past few days for me. It’s not lost on me that I was a hot snotty mess at Bridgehead on Monday, or that I cried in front of peers on Saturday, or cried with a friend who had come to ‘check in’ on Sunday. To feel so much numbness and pain wrapped together today. I knew these days were coming and I tried to steel myself to the memories. It’s a ridiculous space to be in – to seem ‘normal’ to the outside world, to know that few friends  ‘get it’, to notice others who carry on, to try and function.

I work really hard every day to move through the thick dense fog that has become my way of feeling and sensing through the world. Some days the sun peeks through and there is light. Sensing and feeling become easier. Other days, most days, I sink and the numbness sets in, and I feel like I am moving through time and space at a fraction of time different than everyone else in this world. Like my world is shifted. It’s imperceptible to others, but it affects how I see things.

There is so much I want to share about what happened, about Kate, this journey, the coping (the not coping), what needs to change, what I understand will never change. There are so many words and sentences, paragraph rants rolling through my mind, wanting to get out and be shared. It takes energy, and I often don’t have it. It takes courage, and I am not there yet with sharing parts of the story and journey.

What can I share…

I am broken and that will never change. The ripped and shredded heart in my chest is scarred and maimed and bleeding. I place my hands on it. I can feel it. I try to nurture some healing toward it.
There is no cure – I am told – maybe time. Maybe.

I am hurt, and I am angry. And that story needs to be told another time in another space.

I live with intense regret peppered with shame and enveloped in grief. I want to turn the clock back everyday. I. Want. Her. Back.
And I can’t have her. And when I realize this, everyday, it stuns me.
I want to change the decision, the information, the conversation, the guidance, the momentum around the bone marrow transplant. I want another person to step up in the storyline, someone that would speak up – with authority – and state the reasons that this should not proceed. I want to shift the timeline to a point where I make a different choice, at any point along this journey, and where I allow myself to be scared, vulnerable, and upset, and can say No to those pressing us forward. Where I take that tour of the bone marrow transplant unit and say No. Where I sit around a table with 20+ doctors who I feel I am trying to educate about Kate, and say No. Where I sit in any one of the meetings and discussions about the bone marrow transplant and I remember how amazing Kate is, how we are coping, how fragile she is to any change, and I say No. Where I ask the question, “should we do this” and someone says No.

I want a chance to make another choice. I want to have learned from someone else, not others learning because of Kate.

I want to be able to go back and say No.

I want. And I can’t.

And it breaks me every single moment of every single day.

So there it is. Massive grief burst, but only a big wave amongst the smaller waves that I live with every day.
When I read about grief journeys, or hear about them, mine seems spectacularly far to the right on the spectrum. An outlier of intense pain, sadness, and intense regret.

Kate died at 10 p.m. on November 30th. Brian, Jack and I were with her. She didn’t look like herself, her hair only slightly grown back from her chemotherapy, face puffy and distorted from medication, tubes sticking out of her, oxygen shoved into her face. The denial of what was happening had been stripped away, but also remained. We sang to her, told her stories, held her hand, we told her we loved her. She was so intensely loved.

We watched our beautiful child die over 9 short months. She lived in isolation in a hospital away from home, she was poked, prodded, examined by strangers, put through painful procedures. Some people took great care of her, others did not. And she was endearing the entire time.

Kate was amazing. She was the best parts of Brian and I.

I marvelled at how happy she was, how much she loved, how much she was loved. She exuded an incredible light that came straight from her soul. You couldn’t meet Kate and not love her. The loss of that love is so wrong.

I want to take it all back Kate-o.
I’m so so sorry dolly.