My dear daughter, so many years have come and gone since you started your treatments that I don’t even remember when the nightmare actually began. People often say that time heals all wounds and mends broken hearts – at least on the surface.
I’d like start by telling you that sometimes I don’t recognize myself anymore. A part of me has vanished, for good. Too much suffering, too much injustice, too many feelings of powerlessness. I’ve had to keep my head down and keep forging ahead. When they put needles into your catheter and you’re scared, I comfort you, I hold your hand, I stroke your hair, I kiss your forehead. But it always upsets me, just as much as the first time. But you don’t know that. As a mom, you never get used to seeing your child suffer and experience the pain you wish you could experience for them instead.
How many times have I begged the powers that be to take your place? When I see how affectionately the nurses, attendants and receptionists greet you, how they take the time to talk to you and reassure you, ask us how we are doing no matter how busy they are, I think to myself, I can catch my breath during these few hours I spend by your side. Sometimes, I feel guilty for not listening as you talk about what you love – animals and Pokémon – as much as I would like.
How many times have I begged the powers that be to take your place?
You see, I often lose myself in my thoughts, in my reading, in the music I listen to. It just takes over. Maybe I’m trying to escape a cruel reality that still cuts me to the quick. I feel tired and worn out. But you’ve done a great job getting used to life with your condition. You should know how much I admire you for that. I still have a long way to go to catch up to you. Slowly but surely, as they say…
While you’re undergoing treatment, I like to watch you sleep. You look so calm, so peaceful. I listen to the hospital noises, the sound of the IV pumps, the blood pressure machines, the comings and goings of the nurses. I often think ahead to going back home, to being with your brother, your sister, your father, your grandparents and our beloved dog.
My routine at Sainte-Justine is well defined at this point. As soon as the medication takes effect and you drift off to sleep, I go get a nice hot cup of coffee – one of my favourite things in the world. It’s so soothing… but before I do that, we always take our traditional selfie, giggling ourselves silly along with your caregivers.
As you know, I always bring you back an oatmeal cookie from the snack shop to gobble up on our way home. As we wait for the three bottles of antibodies that keep your condition stable to be transfused into your blood, I chat with the other parents there whose ordeals are probably very similar to our own. Conversations like those make the treatment seem shorter and the experience more human.
What you may not realize is that, at work, I am always cheerful, strong and peppy. It’s important for me to say “good morning” to my coworkers when I get in and “see you tomorrow” when I leave for the day. And it’s just as important to thank and acknowledge them for what they do. Thinking of you, your brother, your sister, your father and your resilience helps me get through the tougher days, which definitely do hit me. No matter how many people you may have in your inner circle, you can sometimes feel very, very alone…
My dear daughter, I would also like to let you know that, sometimes, I tell your dad that I don’t have the energy to take you to your treatment. And I want you to understand it’s got nothing to do with you. It’s not that I don’t love you. It’s just that I need a bit of a break from time to time, so I can heal, far away from the hospital and the painful memories that spring up, all too often, in my mind.
Know that I love you, Maëlle, and our whole family, with a love that is so big I can’t describe it in words. Even though we’ll never forget what we’ve been through, nothing can stop us from laughing, having fun, going to work, going out for a run and living our lives. Am I happy? Yes, I am. Because happiness is being with you – it’s pretty simple. Like the novelist Anna Gavalda once wrote, “They asked nothing of them in return other than to be happy together. Not even happy, actually, they weren’t that demanding. Just to be together.”
Your loving mother,
Catherine Kozminski xoxo
*The remarks expressed in this article reflect the opinion solely of the author and should not be considered as representative of the CHU Sainte-Justine Foundation.
