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.
Hi Julie – I met your Kate once and will never forget her. I thought of her and of you, Brian and Jack early this morning when I went for my daily run. The sky was tinted pink and I thought “run your heart out for Kate and her family today”. Thank you for so openly sharing your grief – the world desperately needs more people like you Julie who aren’t afraid to be ‘a hot snotty mess’ in a coffee shop or to tell others that the loss of a loved one, especially a child, rips a hole in your heart and soul that never fully heals. Kate would be so very proud of you. xo C.
You touched my heart with your descriptions of grief and dismay I. Want. Him. Back. Ohh what a journey!! My memories are always of your love for Kate – it shines always.
Kim & Kevin
I think of her so often, especially as the anniversary draws closer. I feel only a minute fraction of the weight and loss you feel – what a loss it is. The past tense does not suit her. It never will.
To borrow from the title of the book I sent you a link to not long ago: it’s okay that you’re not okay. How could anyone ever be whole or the same? It’s not possible.
So much love and strength to you, Brian and Jack, for every day that has passed, and every day yet to come. And always, love and light to Kate.
Oh Julie. I started work early this morning. As I was driving in I thought about stopping to take a photo because it was just that spectacular of a sunrise. Kate’s gift this morning. I am ashamed that I didn’t realize which day this was until later. I am sad because I think of her all the time – and when it was the most important I missed it and didn’t say thank you.
I have another early morning tomorrow. I may have another chance to see it, and it crushes me that Kate doesn’t. Kate was joy and light and attitude – fearless and brave. I am so proud of you for keeping on when it is the hardest. Sending you all the hugs – and some for Brian and Jack too.
I awoke this morning….so much on my mind but I was drawn to the window over and over. There was the most unique sunrise. Brilliant colours and a pink glow enveloping everything. How special to witness this glorious sunrise and to think of Kate. And you. And Brian. And Jack. I can do, so sorry that you are so, so sorry. Love to you. XO
Much love, Julie. Your beautiful writing is such a testament to that incredible little girl.
As you know, November 30th is the day my father died and like you, it’s always a challenging day to get through. My dad passed away at 8:30 a.m. and like this past Thursday morning, that morning’s sky was beautiful – filled with amazing colour and light. I force myself to spend 5 minutes every November 30th at 8:30 a.m. to remember that sunrise and all the things that made my dad so special. Since Kate’s passing, November 30th also marks the day where I send a little prayer for her out into the universe and positive energy to you, Brian and Jack.