I Hate This
Posted by Aimee Bruner on Jun 19, 2012
I hate this…
I hate that this time last year I was running down the street with Stella on her bike, watching her drag her feet on the pavement for blocks and laughing as I was trying to explain to her that her shoes would get wrecked if she didn’t keep them on the pedals – and now, a year later, I’m sitting beside her on the couch, my eyes burning and brimming with tears, watching as my baby girl, MY Stella, lies curled up in a heap – her chest barely looking like it’s rising and falling at all, her mouth open and tongue slipping out making a sucking noise like an infant does for comfort. Curled up like tiny kitten, her bony legs lie twisted under her new Olivia blanket as beads of sweat pool on her little nose.
I HATE that no matter what Mishi and I do, we can’t protect her from this. We can’t fix it and we can’t change it. We just have to get up each day and witness the unimaginable destruction this tumour has unleashed on our child’s body and her abilities. – She can’t talk. She can’t walk. She can’t move her head or hold it up. She can’t swallow her own saliva – it makes her choke. She can’t see anything unless it’s right in front of her. She has no control over her arms and she can’t use her hands anymore. Her legs don’t work – they’re stiff and contorted all the time. She can’t move the appropriate muscles in her body to have a bowel movement. Her eyes don’t shut all the way anymore, even when she’s asleep. Her feet and toes are so sensitive that she flinches anytime something grazes past them. She can’t even cry anymore.
I hate this.
How is a mother supposed to “let go” of her baby? I know it’s something that Mishi and I both need to do but PLEASE someone tell me how we’re supposed to do it. I’m not in denial, I know Stella is going to die and I know it’s likely going to happen sooner rather than later, but with all of my being, I want to hold onto my baby. I held her tiny head when she made her way into this world and from that moment on, I swore to myself that I would do everything in my power to protect her and make her happy. Like my parents did for me, I would make sure she knew what unconditional love felt like. I would make sure that she always knew how proud I was to be her mother.
I hate that I can’t protect her from this.
I hate that Gracie, Stella’s cousin and best friend on earth will have to come to our house one day and struggle to understand why Stella isn’t here waiting for her on the couch. At the age of only four, this incredible little girl has already amazed us with the depth of her understanding of what’s happening to Stella but the permanence of the whole thing is still something that she doesn’t fully grasp. With the help of some close friends and experts, Gracie’s moms have worked so hard to be direct and honest with her about what is happening to Stella. Their courage astounds me and it breaks my heart to watch Gracie try her hardest to interact with Stella in new ways. It’s hard enough to be four. Like Stella, Gracie too has adapted in ways that I wish we as adults only could. During our weekly sleepovers, she makes games for herself and stretches her imagination as far as it will go in order to pass the time and have some fun while Stella sleeps for hours or stares blankly into space. Gracie was the first baby I ever loved like she was my own and I wish that I could protect her from all of this. But again, I can’t.
I hate this.
I could go on forever about how much I hate what is happening to our little girl, what is happening to our family, to who we are and to the life that we built for ourselves but I know that in the end I would just find myself trapped in a world of hurt, consumed by anger. That isn’t something I want for myself or the family that I need to support. Often, when I find myself weighed down by thoughts of what our beautiful daughter can’t do anymore, she reminds me of all the things she CAN do.
Communicate love by kissing the air.
Stick out her tongue to let you know that she means “yes”.
Create her own language (she’s just decided on her own that sticking out her tongue for a long period of time means that she wants her bottle)
Dance with her eyes, a little wiggle of her arms and a tilt of her head.
Sit on her beanbag chair by herself.
Eat mashed potatoes.
Laugh and smirk……only when you’re funny though.
Play hide and seek under a blanket.
Give Buddy, the dog, treats.
Choose her own clothes.
Take meds even when they taste yucky.
Through all of this, our little three year old can find the strength to hold onto her spirit and be her self - I will be eternally grateful to her for that.
So over the next few days/ weeks, Mishi and I will try to find it within us to start to let go of having Stella here with us but I assure you – we will NEVER let go of who she is and how she has infiltrated every facet of our souls, tethered tightly inside us where she will stay forever.
Stella CAN say "yes" to Grand-Pa by sticking out her tongue
Stella CAN help DeeDee blow out Birthday candles:
Stella CAN read books with Nanny, Mama and Gracie:
Stella CAN pretend to push Sam off her beanbag chair:
Stella CAN play with her friends in the backyard:
Stella CAN share her Tutu with Sam and Gracie:
Stella CAN stop our hearts with her smile: