I'm Scared
Posted by Aimee Bruner on Feb 07, 2012
I'm Scared
I'm scared…
…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:
Comments (31)
Aideen K:
Feb 16, 2012 at 10:23 PM
Aimee,
I wish I could give you a big hug to comfort you right now. You are a wonderful mother. I wish that I could take this pain away from you and your family. My thoughts and prayers are always with you.
Elena Baker:
Feb 14, 2012 at 11:58 AM
"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."
Hugs to you all through this time.
This quote from you sums up my days - today is a week since we said goodbye to our tiny baby girl.
I don't know how or when this will come for you, but there are people praying for you all and thinking of you often.
Lisa DePaola:
Feb 13, 2012 at 06:03 PM
Aimee its ok to be scared...reading your posts reminds me of my sister..she'd sleep and hold her son..checking his chest to make sure he was breathing if he slept in! She is precious...and when someone asks..you will always have 2 children.! I still have one nephew and 8 nieces!! only my nephew has gone and we will one day meet again and he wills how us the kingdom the paradise we have never seen!
Wishing for peace and comfort and that one day we will be able to make sense of this all.
I will pray for your family.
lisa
Shauna MacKenzie:
Feb 13, 2012 at 05:33 PM
You are living with fears that no parent should have to live with. How blessed you are, though, to have such a wonderful family, wife, and children to help you through these fears. Thinking of your family and precious little Stella always.
~Shauna
Nancie:
Feb 13, 2012 at 12:48 PM
:) Stella will be an angel looking over you as u have done for her... xoxo
Meghan Simpson:
Feb 12, 2012 at 10:12 PM
I have been following the postings on your site since the summer and after each one have wanted to respond but simply couldn't find the right words. So many times I've wanted to reach out to help but haven't known how living far from the city.
I think about your young, beautiful family every day and cry for you and for Stella. I know that my heart hurts and I cannot even begin to comprehend what yours' must feel like.
I have always imagined and hoped that all of us GV girls would have our daughters grow up spending their summers together. Stella's vivacious personality would go nicely with Bridget's precociousness and, without a doubt, they'd be scheming together and getting into all kinds of wonderful mischief bouncing along wooden paths together singing at the tops of their lungs.
I wish I could say something meaningful that would comfort you but I'm at a total loss. What I can say though is that your story has undeniably made me a better mother. I have learned to live more in the moment with my girls and to let go of some control of the day-to-day things so that I can focus my love and energy on them. For that, I can't thank you enough for being so open about your experience.
Gari-Ellen:
Feb 12, 2012 at 08:03 PM
I just want to say how much I admire your courage and openness at this heart-wrenching time of your lives. This beautiful angel will have spent a very loved time on the planet and her soul's goodness and your abundant love and bravery inspires us all. I wish with all my heart you were not in the position you are in but you have elevated every consciousness that sees your path! My prayers and blessings are with you and your family - may everyone on the planet know love like your Stella has!
CateinTO:
Feb 12, 2012 at 09:16 AM
Aimee, I read this the other day but wasn't sure what to say... and I've been thinking about it ever since. All I can say is that the first step in facing fear is saying that you're scared. And if you weren't scared, there would be something wrong -- you're losing something no one should lose. The paradox of certainty of the outcome with uncertainty of how it will unfold is crushing. I can only hold out my metaphorical hand to you and Mishi and let you know that I am thinking of you and witnessing you.
Julie B.:
Feb 11, 2012 at 03:52 PM
Continued strength and prayers Aimee and Mishi xox
althea:
Feb 11, 2012 at 01:42 PM
woke up this morning thinking of you all - prayers every day from this end and hope you feel the love i'm sending you
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