Khalil Gibran says of Joy and Sorrow:
“Your joy is your sorrow unmasked. And the selfsame well from which your laughter rises was oftentimes filled with your tears. And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter’s oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.” But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.
Verily you are suspended like scales between your sorrow and your joy.
Only when you are empty are you at standstill and balanced. When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.”
Aimee and I are missing Stella a lot these days. Maybe it’s the weather. Maybe it’s the impending October 22nd date. But I think it’s just that she’s been gone for what feels like a long time now, and since our lives have settled into a “new normal”, we feel her absence deeply.
I recently admitted to Aimee that I’ve been staring at the big blow up photos we have of Stella. They are the posters that our friends Ray and Brad made for Stella’s funeral and if you look closely, you can see the pores of her skin. You can even see little droplets of milk in her downy blonde moustache. And her perfect little teeth, all lined up in a row with a little space between the two front ones. I find myself spending copious amounts of time staring at each laugh line and eyebrow hair, willing myself to remember exactly what she looked like. I stare at her curls and marvel at home some of the photos were good enough to capture the colour of each individual strand. Some are blonde, some are red, some are so light they look white. After I admitted this to Aimee, she confided that she, too, had been looking at pictures of Stella. She said she looks at ones on the laptop computer and zooms in as close as she possibly can to her eyes and the curve of her cupid-bow lips. In our own ways, we are both desperate to hang on to the details we remember about her body.
When I look at her photo and run my fingers over the flat cardboard, wishing with all my heart to feel some warmth underneath, the physical pain I once felt all the time returns instantly. It’s a weight in my chest that has sharp edges to it. It makes me feel as though I am carrying 100 extra pounds just beneath my ribcage, and it hurts to breathe sometimes.
As we integrate ourselves back into the “outside” world, I struggle to remember that Stella’s life was not just a flash in the pan, but a real and meaningful journey. I have transitioned back into a world where people push each other away from subway doors, click their tongues loudly when they feel the Tim Horton’s cashier isn’t moving fast enough, and become one of the masses. A nameless, faceless figure moving through the hallways of school, fading quietly into the background as I assimilate with the other students. It is hard in this environment to remember the beauty and safety that was my life for 16 months. 16 months where, though we were doing something impossibly sad and difficult, we had people holding our hands the whole way. Now we have been released into the big, bad, world and though I’m much more sure of myself then I once was, Stella’s cancer has made me cautious. I guard my heart and keep my cards a bit closer to my chest. I have known pain and sorrow and gone to dark, dark places and am in no hurry to go back.
I was giving the boys a bath last night, and for some reason I flashed back to the morning after Sam was born. I had the worst anxiety attack of my life just after he exploded into the world. I sobbed in my father’s arms in the hospital feeling as though I were being sucked into a big black hole and that if I let go of his fuzzy orange shirt for just one second, I would never be able to climb back up again. I remember going home feeling completely drained, exhausted, sleep deprived, and stressed beyond belief. I went into the bathroom and just collapsed on the ground. I was so, so sad. Devastated that the little boy who was just born wouldn’t get to know his big sister. Plagued with memories of the happy day Stella was born, and the knowledge that she would soon die. Distraught that I wasn’t at the hospital with Aimee and Sam where I wanted to be because I hadn’t been strong enough. I didn’t know how I was going to muster the strength to get up off that floor, let alone see Stella through her cancer and eventual death. I remember feeling the cool tiles on my cheek and the painful waves of sadness that ricocheted through my body, ripping through everything like a grenade. It was darkness and pain. I shook myself out of the memory and stared at Hugo and Sam who were playing their own version of “peek-a-boo” together and belly laughing. The pure joy and delight they were experiencing was such a contrast to the dark place I had been that day. I remember the thing that got me up off the floor was the knowledge that Stella was sitting, waiting for me to join her on the couch and watch Dora The Explorer with her. I reflected on how first it was Stella herself, then later Sam and Hugo who were the reasons I got out of bed for many, many, months. And though I am working on building our life back up by going to school and starting new routines and new memories, I don’t think I can yet say that I get out of bed for myself yet. It is still my children that keep me going. I think I’ll get there. Get to the point that it’s my whole life that makes me happy, but right now I still have lots of times that I want to pull the covers over my head and disappear.
I miss Stella’s cackle. Miss her grin when she knew she was about to get in trouble. Miss the soft clicking noise she made when she slept. I miss buying little girls clothing and dressing her up for the Holidays. I miss listening to her sing the Golden Girls theme song, and dance her heart out. I miss looking down at the crook of my arm and seeing her face resting there, long lashes resting softly on her porcelain skin. I miss the “blam blam” ice cream march that we did every day, twice a day to get her to take her medications. I miss stretching my imagination to find things to do with her on the couch; tea parties, pedicures, puppet shows, reading, singing. I miss having a singular focus and goal, which was to keep her happy.
I used to always make wishes, but now I don’t know what I wish anymore.
For a long time, I wished (of course) that she had never gotten DIPG. Now I’m not so sure I can wish that anymore because if she hadn’t gotten sick we would never have had the incredible perspective we have now. We wouldn’t have Hugo. We wouldn’t have the knowledge of how to parent in the present. We wouldn’t have many of the amazing friends that fill our lives with joy whom we met through Stella’s illness. We wouldn’t have the same level of simplicity and honesty and fearlessness in our lives. Yet it seems crazy to say you wouldn’t wish that your child was here and healthy. It’s like being locked in between shadow and light. There are so many things I don’t understand, so many things that make no sense to me now.
But I know that when I see the leaves turning I miss my daughter. And though I can’t say that I am unhappy in my life, I am sad at moments when I allow myself to fantasize about how she would look and what she would be saying to me right now. Aimee and I fluctuate between moments of tearful disbelief, powerful sadness, huge gratitude, intense pride, and pure joy.
I think it is as I’ve always suspected; that happiness and sadness exist together in my world and in my heart and there is a place for both of them. Someone once said that if you think of life as a piano, the white keys are the happy times, the black keys are the sad times, and only when you play them together do you get the purest, most beautiful music.