There is a photo of Aimee and Stella and I that hangs on the fridge. It was taken just before Stella turned 2 years old and the three of us are laughing into the camera. It used to be in the centre of the fridge, one of the only things hanging there, but in the last 2 1/2 years it has become crowded out by new pictures. Drawings from Gracie, photos of the boys, a well-used calendar, magnets. Our fridge is a messy, crowded hodge-podge of moments all mashed together with no rhyme or reason. It looks much like all my friends fridges. Except for the scribbly painting made by our daughter is starting to turn a bit frayed and yellowed at the edges. Other people have more updated art on their fridge, but ours is from 2011. Over 2 years old already.
This morning I paused in the morning routine of getting the boys dressed and fed to run my fingers over the peripheral our photos, and straightened them out a little. I remember so clearly the day each one was taken. My favourite one of Stella is always in the centre, and I love it because I can hear Stella’s little cackle bursting through the glossy paper. But it all seems so long ago and far away now. It was before DIPG. Before Sam. Before Hugo. Just photos on a fridge that don’t quite tell the heartbreaking journey we’ve been on.
I think I know now why so many DIPG families stop writing about their lives shortly after their children die. It’s because life has a way of becoming mundane all over again. You are forever changed by your experiences, but the world sucks you in with its normalcy and you feel as though you are too “normal” to write anything anymore. But that’s not really true. Once you’ve lived through something so profound and honest, nothing is the same anymore. But most of the changes in life are small, so small that maybe nobody else would notice. For me, the most obvious difference is that despite the fact I have gotten so much more lenient around things like forcing my children to do what I want when I want them to, I am actually operating at a much higher level of anxiety than ever before. No matter what the situation, my mind tends to jump to “worst case scenario” now as opposed to “it’s nothing,” the way it used to before Stella’s diagnosis. I remember quite clearly that when Stella first started exhibiting what would turn out to be her first symptom of DIPG (slight ataxia— a tiny wobble in her walk), I was quite annoyed at how “concerned” some people were about it. Aimee and I avoided taking her to the Doctor for almost two weeks because we were fairly sure it was something completely benign that would clear itself up. Likely the cheap sandals she insisted on wearing. I would have bet my entire life savings that whatever was wrong with Stella, “it was nothing”. But as you know, we were betrayed so deeply when she got some rare, random disease that took her away from us forever.
Now, whenever something “normal” happens, my mind always jumps to worse case scenario. Last week Hugo was feverish- yet again- and I rushed him to Sick Kids Hospital, I was convinced he had Leukemia. Fevers can be caused by any number of things, but he seems to get them so often. Five minutes on Dr. Google and my mind had invented an entire future for myself that included watching another child suffer with cancer. Even after the hospital gave him the “all clear” and assured me it was just gastroentinitis, I demanded a blood test to rule out Leukemia. As I sat waiting for the results, I imagined having to tell Aimee what was wrong with our son. Of course, everything came back totally fine and the Doctor assured me that Hugo is a perfectly healthy toddler just going through the regular bouts of “Daycare Sicknesses”. When the Esthetician didn’t show up for a scheduled appointment on Friday, but I could see the lights on in her locked shop, instead of thinking that maybe she had forgotten or fallen asleep (which turned out the be what happened), I was fully convinced that someone had tried to rob her, and she was tied up somewhere in her store. I was <this> close to calling the Police. When I phone my dad one afternoon and he didn’t answer his phone over a period of three hours, I couldn’t concentrate on my classes at school. I was sure he had a heart attack and was lying helplessly somewhere. Turned out he had left his phone (on silent) in his jacket pocket. This inner turmoil that plagues me is exhausting. It’s funny in a way, because if people asked me I would tell them that I’m doing really well. That the stabbing pains in my heart are less acute. That watching my boys growing up and playing together makes me smile. That I am happy at school, and Aimee and I appreciate the small things in life more than ever giving us a sweeter and better quality of life. But the truth is, even with all those wonderful things, I live under a huge amount of self-inflicted stress and anxiety. It doesn’t matter if people say, “chances are it’s just…”, because I know that it doesn’t matter what chances are. Sometimes the rare, horrific, terrible things happen. Those “one in a million” bad things can and do happen. I know this without a doubt, because it happened to me. Do you know that in 2011, there were 93.9 million children between the ages of 0-17 in North America? Do you know that out of those 93.9 million children, only 300 of them were diagnosed with DIPG that year. That’s one in 31 MILLION. And one of them was my Stella. So whenever someone tries to give me odds on something, they are truly meaningless to me. It’s something I need to continue to work on. To not expect that around every corner something horrible is waiting for me. To try to accept all the blessings and good things that are in my life, without wondering when it will all come crashing down again. I think the best way to do that is to continue trying to live “in the moment”. To just be grateful for what is, not what might be even 5 minutes in the future. Easy to say, difficult to do. But I will keep trying.
Aimee and I have been seeing a psychiatrist since just after Stella was diagnosed. Faithfully, every Tuesday we trek over to her office and sit down. Secure inside her beige walls, we let go of the public masks and say whatever is on our minds and in our hearts. In the last two years, we have sobbed openly, raged, dug into our deepest fears, laughed, dreamed and lived all the highs and lows with our incredible Doctor. After the latest session with her, she said to us, “You know, you’re not just surviving the death of Stella. You’re thriving”. It felt like a strange thing to say. Our daughter dead only a year, and Aimee and I were thriving? But I’ve been thinking a lot about it. Mulling it over in my brain, flipping it from side to side and examining the words and the meaning behind them. It’s true, I guess. We have come out of the dark cave of despair and horror and entered the world of the living. We ride the subway, go grocery shopping, host dinners with friends, fold copious amounts of laundry. We aren’t hiding in our beds. We aren’t immobilized by our grief. And, funnily enough, if anyone asked me I could tell them honestly and without hesitation that we are happy. Happy with our family and friends and house and work/school. There are still struggles sometimes. I know I am struggling in my own mind with so many different things. Struggling to accept that Stella is gone forever. Struggling with my anxieties. Struggling with feeling selfish for going back to school and putting my family back into financial and emotional strain. Struggling with loving to see Hugo and Sam together so much, yet knowing that they are only the way they are because Stella died. Struggling to live each day with the purpose and meaning that I promised Stella I would. But, despite the struggles, there is successes and love and joy surrounding us.
Just after our conversation with the psychiatrist, I happened to learn through school that the word “survive” comes from two Latin words, “vivo” meaning “to live” and “sur” meaning beyond. So to survive is simply to live beyond something. Curious, I then looked up the word thrive. Turns out thrive comes from the word meaning, “to grow”. So to thrive is to live and grow. In this context, I guess our psychiatrist is right. We are not just living beyond the death of Stella, we are growing and changing and learning from it.
“Let us not look back in anger, nor forward in fear, but around in awareness.” ~James Thurber