Posted by Aimee Bruner on Feb 07, 2012
…that one day Stella will fall asleep and not wake up. I know that this will happen eventually but I'm afraid that we're slipping closer and closer toward that reality. I'm scared every time her afternoon nap lasts four and a half hours instead of three. I'm scared that her now quiet and laboured speech will soon fade away and trap her in a space of exclusion and frustration. I'm scared for the day that the sound of her voice will only ring inside me and not in the outside world. While watching a video of Stella and her cousin playing at the cottage this summer, I recently realized that I had forgotten that Stella could talk and communicate with ease in August. This unimaginable and torturous situation that we have found ourselves trapped in day in and day out has caused me to forget the sound of my own child's voice a mere five months ago. That doesn't scare me - it just makes me feel like the angriest person on the planet.
I'm scared at the thought of Stella being scared. When she wakes up in the middle of the night, she reaches out for us, her arms flailing uncontrollably and her teeth grinding into one another. While Mishi stumbles to the fridge to get her bottle, I roll over and place my hand on her chest. Her heart pounds through her chest at a speed that I can't even explain. She's scared. It usually takes about five minutes for the beats to slow down enough to count. When we hold the bottle up to her mouth during this nightly ritual, she can no longer open her teeth wide enough on her own to drink. I'm scared that no matter how hard we try to hold down our fear and gently pry her mouth open, one day it won't work.
I'm scared every time I feel her warm drool on my arm when I hold her - the sickening reminder that her ability to swallow is continuing to go and the closer we are to losing the most precious part of our lives. I'm scared for the first time a whole day goes by without a smile from Stella. She still flashes them multiple times a day (a clue that she's happy and still finds joy in life) and with each one we scramble to catch a glimpse of that mouth full of evenly spaced little teeth, each one of us trying so hard to catch it on camera. I'm scared that one day she won't want her bottle. The infamous "baba"…her comfort, the centre of her universe, her motivation for doing things, her lifeline. Through this experience, I've learned that the body can go a long time without food but the days are numbered once there are no fluids getting in.
I'm scared to one day wake up without her. I'm scared for the day that our house and her things no longer smell like her. I'm scared for the first time after she's gone that someone who doesn't know me well asks me how many kids I have. I know what my answer will always be but the impact on the conversation scares me. Sometimes I don't know weather I'm more sad than I am angry or more angry than I am scared but I often think about how scary this must be for Stella. Feeling her body change but not understanding why. Needing to be carried everywhere she goes while her friends run around and the lack of self control that comes with that. Struggling to push her words out but still not getting what she wants or needs. Waking up at night, surrounded by darkness and not being able to move at all.
Despite all of this, our little girl still finds a way to make it through each day and continues to find glimpses of happiness and spurts of joy as she dances to the Golden Girls theme song or to the 100th rendition of Happy Birthday. This makes her my littlest hero and helps turn some of my fear into the strength that I know I'll need to get through this.
Stella, Day Two:
Million-Dollar Smile, Pre-Teeth:
Million-Dollar Smile, Post Teeth:
More Birthday Candles: