Groundhog Day
Posted by Mishi Methven on Feb 01, 2012
Groundhog Day
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:
Comments (18)
Sarah:
Mar 04, 2012 at 11:31 PM
When my grandmother was diagnosed with pancreatic cancer and elected no treatment, we expected she would have about four months to live. I moved home to live with her in the summer, June I think, and she died in February. Nine long months. Nine short months. Nine wonderful months. Nine heart-wrenching months.
After she died, I felt tremendous guilt at not having enjoyed every single moment, at having been frustrated at times, at wanting the journey to end at times. Immediately after her death, I couldn't remember the good times at first - only the times when I felt that my support, my actions, my care, my presence hadn't been good enough. The guilt and grief were horrible. After a time, I fought back against them. I realized that they were not the whole truth, certainly weren't helping me to heal, and really, genuinely didn't reflect the journey we had been on throughout our relationship with one another, before, during, and after cancer.
The good memories slowly started to take over. Her patience during the early days of our 'tofu' casserole picnics on the hill to the east of her house, our times sitting quietly and watching old movies, reminiscing with her oldest and dearest friend, and my absolute favorite memory, her throwing her head back in a peal of then long-absent laughter, her laughter, when I can into her room with a Boston cream donut with a candle in it for her birthday - long after she was able to eat donuts with any enjoyment.
My guess is that you will be tortured by moments of guilt. Others reminding you or telling you that you gave more phenomenal care and love to Stella than should even be humanly possible probably won't make much difference. My guess is that you will have to find your own way through the pain of the guilt, sort of a last gasp strangle hold that intense, overwhelming, acute grief may have over you for a time.
I hope that you find the love and care you gave to Stella mirrored back to you from your friends and family, that you will find the right people or places to cry and rage and collapse and hit and sob, and that you will move through that final stage of horrific grief as quickly as you are able. I think sadness and loss will always be a part of your life. I can't imagine you not always thinking of Stella and where she would be. But I do believe that the horror will fade. I think that the guilt is horror's last trick, after the horror of the bad days of dying are gone. Or, maybe that's just me.
I think of the four of you often. I think of Stella frequently as Declan runs, 'asserts' himself, rages, laughs, and cuddles. I was thinking of you today as Lynn made more chicken pot pie. We'll bring some by this week.
From far away:
Feb 06, 2012 at 05:50 PM
I absolutely agree with the previous comment about a date night, although I know it will be hard on you to be away. I was thinking as I read through your post (especially after the one before that about the roller coaster ride you were on last week) that you have the weight of the world on you now, because you have this awful tragic thing happening that doesn't stop changing and morphing into something new every day to deal with, but you also have the weight of what is to come, and your expectations on yourself. It's a lot, and you've been forced into the longest goodbye, which is so hard to live through (even from the outside). I can only provide one thing to help you through this (besides so much endless silent support from out here) and that is that whatever Stella understands about her condition, the reality is that these are HER final days/weeks/months. Hers. And you are the only ones who can make a difference in how she lives those final days. Only you are there to comfort her, to "wipe away" her "tears" from her heart, and to make her feel that on her final journey, someone is there holding her hand and making her feel secure and safe. Only you. And if it were me, I would be so thankful to have you there. You can't take away what is happening, but you have the power to make the end different for her, and you only have one chance to do that, and that is now, when you are least able to do it. If there are any words of encouragement I can send you, it is to say you have been amazing so far, and to hope that you do find that energy to make it to the end for her. Because, I'm sure that if she's "crying", she must be aware, and perhaps, wanting mommies closer than ever. I am so sad as I write this, and only do so because I don't know you, but have followed your posts and know that if anyone has it in them, it is you and Aimee. I hope this is encouragement from afar. I hope you know we are all here hoping for your strength to bring out more of those special beautiful Stella smiles, even though we know how heartbroken you are. With many wishes for your continued physical, mental and emotional strength on this difficult part of your journey.
Ashley Cook:
Feb 06, 2012 at 02:34 AM
Mishi,
I don't think a single person would be upset with you if you and Aimee had a date night. Stella needs you at your best, not at "present but not". The few hours you take away will allow you to recharge. It is not fair to you or your body to sit there in a catatonic state. You have to come out of this on the "other side", and that means you have to take care of yourself, and especially your mental well-being. Take the time you need. No judgement.
Claudia:
Feb 02, 2012 at 11:36 PM
I have been following Stella for some time now and am amazed each and everytime I read your posts...I can't begin to imagine the strength you have, even when you may just want to get away it is still there. I feel it in your words and your pictures show the love that you all have for one another. Stella has the most beautiful smile both in her eyes and on her face. My daughter lost her son Jackson on September 7, 2011 to this monster, DIPG, and I know that the journey is not one that anyone should ever have to have. You are doing a great job...don't feel like you can't take a walk just to get away for a few minutes...Stella would want you to be able to just go somewhere and scream if you need to. Even if she can't tell you, you are doing such a great job. My heart is breaking for your family. I wish you all comfort and peace as your journey continues. Hugs from Florida
Tricia-Leigh:
Feb 02, 2012 at 10:11 PM
I guarantee Stella's "after snow" picture will stay with me always. Your words had me in tears and then that picture made me laugh out loud. The pair of you were captured in one of the greatest moments...sharing an experience full of life. To end the post with a smiling Stella, was the best part. My almost 4 year old said "even her eyes smile, Mommy!" And you know what? She is right.
Allison:
Feb 02, 2012 at 08:40 PM
That picture of Stella spitting out the snow is the best. picture. ever. Snow never tastes what we think it should taste like. Haha!!!
Lisa:
Feb 02, 2012 at 04:35 PM
You and your family are never far from my thoughts or prayers. I have been on this journey and I know the frustration and fatigue and pain and guilt. And as crushing as all of that feels now, those will not be the memories that are with you 15 or 20 years from now. But, for now, there is life with Stella and Sam and Aimee. I wish you peace from the bottom of my heart.
April:
Feb 02, 2012 at 01:28 PM
Your beautiful, beautiful girl. I thank you so much for sharing with me your journey. It is a gift to my day to know, even as I cry for you and with you. I wish you so much love and strength to do what you are doing -- your most human of lives is blessing us all with clarity and truth, even through your exhaustion. Please kiss your girl for me. I am here almost every day, even though I do not know you. We are like a net around you and your family, all of us who are sending you love.
I am so, so sorry that you are losing Stella. I am so sorry. I cry for you and with you, and I send you love love love.
These days where the exhaustion is bigger than the clarity must be so difficult. I wish you resources, and peaceful repose, and a deep resourcing of new energy, and an ability to touch the exhaustion with gentleness.
Jeremy:
Feb 02, 2012 at 11:25 AM
One of my favourite things about Stella has always been how you can see her molars when she smiles.
Tyffany:
Feb 02, 2012 at 10:31 AM
I've read this blog for a couple of months now, but never commented. It always seems strange to me to say something to someone I've never met, admitting that I've been lurking into their lives, but I suppose it's even stranger to lurk without speaking up.
I don't have any words of advice, as I can't imagine how painful and heartbreaking every day must be for all of you, but I couldn't let another post pass without letting you know how brave you are and how much I admire your ability to not only get through each day but to also write about it here. Thank you for updating and letting us all know how it's going with Stella and her fiercely loving family. And a specific thank you for those of us far removed from you, who wouldn't know of your amazing family without this blog and in turn, wouldn't have been touched by Stella and her very special life. I think of her every day and am so grateful to see each and every update, regardless of the content. Thank you and know that you are all held in my heart.
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