Posted by Mishi Methven on Feb 01, 2012
The last week has been difficult for me.
Not because Stella's condition has worsened, but because I am tired of existing like this. I keep visualizing myself on a giant Hamster wheel---running, running, running everyday but we never get anywhere. It's not like we're waiting for Stella to get better, we're waiting for Stella to die. As the days and months go by, this reality weighs on me making my chest feel like it's holding a 50-pound weight. Tomorrow is Groundhog Day and Aimee and I were just talking about how we feel recently like our lives are like the movie Groundhog Day where you live the same day over and over again. The daily routine is so ingrained in us I often feel like we're sleepwalking through it.
I have been horrible at returning phone calls and emails. I have had a harder time than usual going through the motions of being social. I can smile, but the smile goes no further than my face. I barely ever cry anymore, but the grief is still there--- dried up like sand that sticks in my throat and veins.
Right now, Stella spends the majority of her days staring off into space, at some point that we cannot see. Her lack of speech makes it difficult for us to understand what it is she's thinking or feeling. She does smile a few times a day, and Aimee and I live for those smiles as though they are our oxygen. But they are harder to catch. I find myself wondering if she's still happy. I often lack the energy and ability to engage her the way we used to during our long hours on the couch--- the tea parties, manicures and sing-song sessions have for the most part given way to the endless droning of the television in the background, which no one watches but simply serves to keep us company. The last few days she got some enjoyment from reading books, but my tolerance for it is fairly low. After reading the same book a dozen times in a row, I just can't do it anymore, so we return to sitting and staring. I wish I weren't so selfish in these moments, but I just want to break free of this prison made of sunshine and shadows. I find myself getting lost in books I download on my kindle, or borrow from the local library. I find myself getting caught up in horrible television programs on TLC and sometimes I don't even notice that Stella is struggling to speak to me.
The camera is always within arms reach, ready to capture any laugh or smile that Stella has, but I choose not to capture the other parts of the day--- the ones where she tells me she's sad and where she struggles to open her mouth wide enough to shove avocado in it. At first it was a subconscious choice, but now I think about after she dies going through the photos and wanting to remember it as a beautiful time, blocking out the times that made my heart ache.
The first few months it somehow felt like such a noble thing to give up our entire lives and focus only on the well-being and comfort of Stella and Sam. But now, 7 1/2 months in the grind is starting to wear me down. I feel like a two-dimensional copy of the old me. I think maybe because I poured all my energy and love into Stella's quality of life, when she began to fade into a shadow of her former self, so did I.
I just wish this was over---but not that I wish Stella were dead, just that I wish this journey didn't have to be at all.
Everything feels harder today. Things that were perfectly do-able two weeks ago are weighing down on me now. I hate watching her struggle to form the words that once flowed easily from her rosy lips. She gets frustrated with us so easily, and we get frustrated with ourselves. "I'm sorry, honey" we whisper in her ear as she frowns and flails her arms at us in frustration. I hate forcing her to have baths once a week, her stiff body almost impossible to wash properly, even though I am in the bath with her. Her legs don't open or bend, her head falls to the side, her little hands curl into hook-like positions. She hasn't been able to cry tears in months, so she just says to me, "I'm crying". I hate seeing her drool and try to focus on our plastered-on smiles when she should be running and skipping and twirling in the snow.
Aimee and I spend all day (with the much-needed help of our sisters and parents), juggling the needs of our baby and our baby-like toddler. Sam is bouncing around and bearing weight on his legs now. He is cooing and smiling. He is grabbing at objects. He is a promise for a bright future, even as our lives are crumbling. I try to notice all his milestones, but often wonder if I've missed something while doing time on the couch.
Today I am looking for a place deep inside me where I can get the strength to finish out this journey. I am worried that our caregivers are going to be burnt-out as we head into the eighth month of Stella's brain cancer. I am worried that I will find it harder and harder to gather the strength I need to give Stella the bright and happy final last days/weeks/months she deserves. I am worried that I am leaning too heavily on Aimee which is taking away from her ability to mourn and grieve and be present with Stella. I'm worried that the guilt I feel for wanting to get away from this situation will eat me alive when Stella does die, and I will kick myself for not spending every waking minute breathing in her smiles.
This journey has been so full of ups and downs. There have been moments of unexpected joy and bliss that make me feel so grateful for the opportunity to have this time with Stella and our family. There have been days that I didn't think I could do one more minute, and then weeks later I have felt the strongest I ever have in my life. There are times when I welcome the clarity this journey has given me, and other times that I long for the ignorant bliss of last spring.
This last week has been difficult for me but I know that it is not the most difficult week I will have. I also know that somehow, somewhere, I will muster the ability to get up tomorrow and give Stella hugs and kisses and play with Sam and tell Aimee I love her.
I know that all it takes is one smile from Stella and I will have the energy to do it all again, one more day.
Stella wanted to go outside and taste the snow...
Hmmm...didn't taste that good after all!
Seems like only yesterday Sam was reading Dr. Seuss...now he prefers Archaeology Today:
The smile that fuels us: