Last year around this time, I connected with a family whose daughter had also died of DIPG, only 4 years earlier than Stella. I remember that the father held my arm as we spoke words and feelings that are part of a common language of experience that the outside world doesn’t understand, and told me earnestly that the second year after your child dies is worst than the first, and then the third is even worse than that. I wasn’t quite sure what he meant at the time, but I think I’m starting to figure it out.
The thing is, the world around you keeps moving and growing and changing, and so do you, but all these changes and all this time takes you further and farther away from your child. It gets harder and harder to close your eyes and see their face, or remember the exact way their forehead smelled, or the precise pitter-patter noise that their feet made as they ran down the hallway.
And it’s harder because as time passes it’s supposed to get easier. You’re supposed to feel better, to hurt less. You’re meant to get up and get on with your life. And I think most bereaved parents do. But there is a false belief that the longer it’s been since your child died, the easier it gets. For me, so far, the truth is, the longer it’s been since Stella died the more “good” days I have, but it doesn’t mean I don’t still have bad days, bad weeks, bad months. And when those bad times come, they are just as difficult and devastating 3 years later as they were in the moment.
This revelation became abundantly clear to me two weeks ago when [my nephew] Xavier had a minor day surgery for a thyroid cyst he developed in utero. Although the surgery went well, the medical team, unexpectedly, decided to keep him in the hospital overnight. I wanted to go visit, to support Heather and Daniel and check on the little guy, so I offered to bring them a few things they might need for their overnight stay. After a quick packing of a small bag, I headed down to the hospital.
I knew I was in trouble the moment I walked in. I had entered through a back door and ended up on the far side of Sick Kids Hospital. It was the food court area. Immediately, I broke into a sweat. Somehow I had blocked out that I would be going to the very hospital that Stella got her horrible DIPG diagnosis in. I saw the restaurant I remember my dad getting soup at and trying to convince me to eat, as over the course of three days he watched me shrivel into a shell of my former being. As I continued walking through the hospital, my head began to spin. It all looked the same as those first few horrible days of June 2011 when I wandered these halls, trying desperately to feel firm ground under my feet. Sometimes I couldn’t even sense my own eyes blinking as I was walked through the nightmare from which I couldn’t wake. Retracing the same steps I took back then, I passed the low, dark hallway with “MRI” written above the doorway and felt my veins go cold as I relived the last few hours of Aimee and my innocence about how cruel the world can be. I remembered taking Stella down that MRI hallway, completely oblivious to what was going to happen next. I saw the gift shop Aimee and I bought Stella a stuffed Dora doll in while we waited in Emerge, completely ignorant to the horrors that were about to unfold. I saw the Starbucks where I spent an absolute fortune on food and drinks after Stella’s diagnosis. I saw the front doors of the hospital that I walked out of for air after she was diagnosed. I gulped and gasped the hot, smoggy summer air, willing myself to just breathe as my heart shattered into a million pieces. Everything looked the same in the hospital; the sights and smells were so triggering that I thought I might faint. I texted Heather to find out where in the hospital they were. 5D, she reported nonchalantly. And then, I really did have to sit down. Because with Stella they put us in 5G, which was the wing directly across the hallway from where Heather was. I would have to go back. Back to *there*. I almost ran away at that moment, I really did. I had to breathe deeply and force my wooden legs to keep taking steps towards the elevator. I got off at the 5th floor and the first thing I saw was the bench I sat on at 3am that second night after diagnosis. I curled up on the cold, green vinyl bench, wrapped myself up in my big gypsy-style skirt and sobbed until my head throbbed. I scratched at my arms and rocked back and forth as Stella slept peacefully in the ward, and I grabbed onto the wire walls that look onto the atrium and wished I could pull them out so I could jump off the floor and out of this life that hurt so much I couldn’t even breathe. I remembered all these things as I headed to Xavier’s room and wondered anew at how random life can be sometimes.
Once I got into the room and saw Heather and Daniel and Xavier, I felt a bit better, but everything was still triggering. Even Xavier who is about the same age and size as Stella when she was there, with his head full of curls and wearing the Sick Kids white pyjamas, made me relive so many things I’ve worked hard to forget. I was glad to leave Sick Kids, but it was a fresh reminder of how fragile this mental peace is that I have at the moment.
After my visit to Sick Kids, I had a rough couple of weeks. Trouble sleeping as my mind tortured me with flashbacks. Trouble focusing at school. Overwhelming stress at the amount of things I have to get done before this semester finished (assignments, tests, exams, etc.). Feelings of parental inadequacy. Not wanting to see anyone socially who has children around Stella’s age. Feeling overwhelmed at the needs of our two young kids. All these things would be considered “normal” if I was newly bereaved, but almost 3 years post-diagnosis and 17-months post Stella’s death, it was unexpected for me as well as my friends and family. I was even embarrassed to write about it here, on this blog that I’ve been so open and raw in for so long, because I didn’t want to disappoint any readers out there that are happy and content to know that Aimee and I are happy and content.
I concluded that it’s harder the second year than the first because by the second year you have, generally, had some “good times”. You’ve probably laughed a little, woken up a few mornings and felt ordinary as opposed to like you’re being stabbed in the chest. You’ve started eating again and doing “normal” things like showering on a regular basis and cooking. And other people see you functioning in society again, and acting like yourself, and they breathe a sigh or relief because they know you’re going to be okay and that you’re still you, and you’re not a total basket case anymore. You can actually see and feel the relief those around you have when they perceive that you’re doing okay, “You’re so strong,” they say with admiration. When Stella first died, or when Stella was sick, people expected Aimee and I to be sad. They expected us to cry at strange moments, to not be able to get out of bed some days. They brought food and didn’t mind when we cancelled things at the last moment, “their daughter has cancer…she’s going to die” they would whisper to each other. There was a universal understanding. It was like a “get out of jail” free card. But now there are new expectations on us, new standards. We are normal now. We have assimilated back into their world.
Except nothing is really normal.
The second year is harder because when you start to feel like shit again, you don’t feel like you have the right anymore. Instead of overwhelming support and sympathy, you get wariness and sighs. And you feel guilty for letting everyone down. For the most part it looks as though Aimee and I have returned to the status quo. I am in school, Aimee is working, Sam and Hugo have daycare during the week, swimming and soccer on weekends. We cook dinner, go to the park, read magazines about the love lives of Brad and Angelina. But the trade-off for these periods of normalcy is that when things aren’t going well— when the sadness and anger and grief bubbles its way to the surface again, there is a certain shame or discomfort that comes with it. “I thought you were doing fine” people say, people think.
I say. I think.
The second year is harder because there is no illusions, no fog, no shock to cushion the horrible truth that Stella is gone forever from me.
But that’s okay. It’s okay to have bad and sad days. It’s okay to realize that even with the absolutely fantastic and happy times, there is a measure of sadness. It’s okay to give myself permission to move backwards in my grief, even if other people don’t understand why.
Being happy doesn’t mean that everything is perfect. Being happy means looking beyond imperfections and believing that each day is worth living, whether you laugh or cry.
“We learn something from everyone who passes through our lives.. Some lessons are painful, some are painless.. but, all are priceless.”
Xavier rests with his daddy after surgery (he’s going great now!):
Hugo isn’t afraid to get his feet wet…
Stella…5 weeks old: