I can’t believe it’s been almost 3 months since my last blog posting. Time is such a funny thing. Sometimes the days and weeks pass so rapidly now that I feel like I barely have time to breathe. I flip the pages on the calendar in the kitchen and can’t believe it’s been another week…month…season…year.
After spending so much time in what felt like a vacuum where time was meaningless and the only thing that mattered in life was whether or not Stella was still alive that day, I still feel frustrated sometimes by how everything just keeps spinning and we have to run to catch up. It’s made me think a lot about the whole idea of time and space and grief. Is it that time really softens the pain, or is it that the world doesn’t give us the time we really need to grieve and remember?
June 24 marked 5 years since the day Stella was diagnosed with DIPG. It’s a horrible anniversary. A piece of me died that day, and even though Stella lived for another 16 months and taught me the true meaning of life as she did it, for Aimee and I June 24, 2011 is the day that our future was ripped from our hands and hearts and lay bleeding in front of us. We didn’t do anything organized to mark the date. We both cried a lot, and Aimee took the day off work and spent most of it by herself at the Eaton Centre doing shopping therapy., followed by a solo visit to Stella’s tree. I worked, going to a Catholic Church that day and helping another family say farewell to someone they loved very much and trying not to think about what the day meant to me. I avoided looking at the clock as much as possible to stop the persistent memories from flooding my brain about what had happened that day 5 years ago at 7am…9am…2pm…etc. etc. It worked for the most part and Aimee and I got through it with an almost familiar pattern of me trying to forget and avoid the pain of the day, and her needing to feel it.
When I woke up that morning, I thought about how strange it was that this combination of dates was so painful to Aimee and I, yet reflecting how no one else would remember it. I was shocked when barely into my morning I received a text from my friend Sheri who wished me strength on the day. Then I got a phone message from my friend Omo and a text from Tasha. Later my sister Heather showed me a beautiful message my 20-year old “tough guy” brother had posted on Facebook commemorating the day which many others had commented on or “liked”. I couldn’t believe that people remembered and even though I didn’t really speak to anyone about that day directly, knowing that I wasn’t alone in my grief, knowing that even 5 years later Stella is remembered, was like having a warm blanket pulled over my chilled body. It was truly touching. I don’t expect people to remember— Lord knows I remember nearly no dates that are important to my friends— but that day I felt so much less alone than I had expected.
Thank-you for that unexpected gift.
I can’t believe it’s been 5 years since that horrible day. I can’t believe Hugo is almost 4 and Sam will be turning 5 in the fall. I can’t believe how unrecognizable my life is. Slowly Stella’s stuffed animals and tea party set and puppet show and doll stroller have been pushed into the corners which are now overtaken with trains and superheroes. I know the names of all 6 Power Rangers and can tell you the “secret identity” names of Superman, Spiderman, Batman, Robin, Wonder Woman and more. I know who Jayna and Zan are. I am aware of the secret powers of Flash, Green Lantern & Hawkman. I can have a semi-intelligent conversation about how Lex Luther and Brainiac and Cheetah keep trying to take over the world with their high tech computers and why they keep failing. Sam plays T-ball and rides his bike incessantly. Hugo loves to be in the water and wrestling with cousin Xavier. And sometimes I sit at my desk at work looking at a file and don’t understand how I went from taking minutes at meetings about early psychosis intervention pre-2011, to calling families up and asking them to please bring in a scarf for their loved one to cover the embalming scar.
My sister Heather had a baby at the end of May. A perfect little boy (named Isaac). My brother Tristan graduated High School mid-June and he remarked on that day that my son Hugo was born just as he started High School, and now Isaac was born just as he was finishing it. How is it that life has so many endings and beginnings? I feel like everything is just moving so quickly and I have to work harder and harder to remember the lessons of Stella about appreciating all the little things and taking time to be in the here and the now. Sometimes when I’m standing at a grave and the Priest is doing the final committal instead of listening to his words, I try to take in all the tiny things around me. I concentrate on the subtle pattern my high heels made in the grass as I walked to the grave, or notice how the slight breeze lifts the pages of the Priests book as he reads. I try to be aware of the warmth of the sun against my cheeks and try to spot the ant crawling around the tombstone. Only in those moments can I really feel like I’m “there”.
It’s hard to put into words what the long-term effects of such a deep grief are. How changed I am from the inside out. I’ve found a way to be happy, worked hard to find the JOY that Stella challenged us to find. But I’m totally different now. I can understand how easy it would be for peoples marriages to dissolve after the death of a child because you’re not married to the same person anymore. Aimee and I have found a way to hold each other up through mutual respect and understanding of our individual needs. But I’m certainly not the same person, or parent. I’m lackadaisical… to a fault some people would say. But I don’t care if the kids wear pyjamas to school or if they strip down to their underwear and jump into a local wading pool on a whim. I don’t stop them from splashing in mud puddles (even when they are in clean clothes). I’ll buy them freezies from the store even if they didn’t eat all their broccoli and let them stay up past their bedtime watching movies with me in bed at the cottage on a Saturday night. If I drip water on the floor, I usually don’t even notice. I prefer paper plates at Christmas so no one has to spend time doing dishes. As an employee I’m not likely to volunteer to work overtime, and try to get out of night shifts anytime I can so that I can be with Aimee and the kids as much as possible. I’m a lazy friend, I never cook (though I love to eat what other people cook!) and I sometimes wear pyjama bottoms and flip flops to the corner store. In order to survive I’ve had to cut out all the things my brain believes are unimportant…random rules that society sometimes puts out that I just can’t get behind. I’m sure I’m pretty frustrating to be around for a lot of people. However, I truly feel less stressed than I used to be and more true to how I want to live my life.
Sam and Hugo were talking about Stella the other day. They do that sometimes. Sam was telling Hugo that they never get to see Stella. They were speaking about her in the context of Isaac. Auntie was going to have a baby and they waited and waited and now he’s here and they can see and feel him. But Stella…we celebrate her birthday, we talk about her all the time and they see pictures and her toys, but not her. They are frustrated by it and even as I said the words, “Yes, you will never ever get to see her with your eyes because she died” the words felt so horribly final to me. Sometimes I feel like I would do anything just to smell her forehead one more time, or wrap one of her curls around my finger. It breaks my heart to watch videos of her talking and saying “Momma” to me because the 2-dimensional version of her is not what I wish for. So I just don’t watch. I protect my heart by only pushing myself so far. It’s not denial, but it’s a protective coating for sure.
Now that the dreadful date of June 24th is over, I’m very aware of the summer and all its joys. I love spending time up at our cottage with family and friends and I never feel as happy as when I’m jumping into the lake with the kids and we all screech with delight at the first feeling of cool water and sunshine on our faces. Five years ago it hurt so much to wake up in the morning, I didn’t want to get out of bed and face the reality of my day. Now I laugh with pure happiness when I get splashed in the face by a water blaster. I can still easily get caught in the net of grief and the darkness of all the “what if’s”, but I try not to. I really believe that Stella lived her short life in a way that I would love to match. One day at a time, one challenge at a time, and always with a huge smile. She taught me that there’s always a reason to smile, you just have to find it.
Two of my biggest reasons to smile, Hugo & Sam:
Welcome to the family! My sister’s son Isaac Elliott was born May 27, 2016:
The three musketeers…Sam, Hugo and cousin Xavier spend a lot of time together:
Big cousin Gracie (she’s 8 now!!!) is still looking after all the boys, still remembering her beloved cousin and BFF Stella:
Stella at 11 months old. I can hear her laugh in this picture…