Push-Pull

I get lost in memories sometimes. As we approach Eleanor's one year cancer-versery, I think a lot about this time last year, except I can't remember this long weekend. It certainly didn't feel like a holiday as I was tearing my hair out in stress and in the thick of some sort of sleep training. We had conquered her going to sleep in her crib, but I couldn't get her to sleep for more than an hour or two without feeding. I tried to soothe her without giving her my boob, but she would scream and scream and scream so after a few weeks of fighting (and frequent "she's fine" trips to the doctor), I gave up and fed her on demand. I was so tired by June, I would wake in the night and wonder which child was up - I was convinced I had twins! So yeah. I don't remember last year's May long weekend.

I find my mind wandering back to a simpler time. It was May 2008, and Kris and I had travelled out from Toronto to do some wedding planning and for him to meet my brothers. We all stayed at my parents and had an incredible weekend, playing with my niece and nephew and having barbecues. It was a near perfect time, but even thinking about it now, it gets foggy with bad memories. Bea was the same age as Eleanor is now, and it hurts my heart to think of it. I didn't think of Bea as a baby; I thought of her as a little girl. She ran around, playing soccer and keeping up with her older brother - hell! She kept up with all of us! Sure, she didn't have a lot of words, but she was way older than Eleanor seems.

Oh, hi baby Bea!

I dread when people ask me how old she is. They usually guess between 9 months to a year. She is little. She doesn't walk or talk. Her hair is short. It exacerbates this push-pull feeling I have all the time. Yes, we should be out in the world and meeting new people and experiencing new things! No, we should stay close to home and trust the familiar things to protect ourselves.

I'm trying. I'm trying to live normally when our lives are so far from normal. It is infinitely easier and enormously harder the further we get away from sick. I'm fully aware of the corked bottle that is my existence, and being aware of it makes it ok, right? Walking around, crying behind my sunglasses is fine because I did the laundry and fed the dog and went to Eleanor's playdate.

Sometimes after she gets her midnight propranolol (which is usually much earlier because I can't stay up til midnight), I put her back to sleep by burying my face close to hers and wrapping my arms around her. I hold her like she is my teddy bear. I hold her close and because she is basically asleep, she stays asleep. My face is smooshed into the mattress and my mouth hangs open so I can breathe and I focus all my energy on NOT drooling. I do this because if I let myself breathe normally and deeply, I will breathe in her babyness, her softness, her fragile frame. Tears well up in my eyes and my throat contricts. I will wait for the mattress to swallow me up because I will not be able to resurface from that feeling of her fragility and innocence.

She is so perfect right now.

When I am not dwelling in the past, I think to the future. I think of all the experiences I want to share with her to help guide her choices. I think of her having nightmares and crawling into bed with us. I think of her slamming doors and telling me she hates me, that I'll never understand her. I never will. I'll never know what it is like to have her disease, her condition, her future. "Future" has become such a daunting word, an intimidating idea. No one knows what the future holds, but they can catch a glimpse if they look the right way. I don't want to see it. Those moments of childhood that seem so recently passed in my own life are so elusive for her. What can you do? I can just love her. Hold on to her and love her. Let her go and love her. Love her then, love her now and love her tomorrow.

Love you, bear