Posted by Mishi Methven on Jun 10, 2012
You know how sometimes you're running, and you get to that point when you feel like you can't keep going because your chest is hurting, you can't catch your breath, you have a stabbing pain in your lower right stomach, your calves are burning and you know it's just time to give up and walk for a few minutes? That's how I've been feeling this week. Except I don't have the option to stop running, so I keep on going even though it is pushing me past my outer limit of endurance, pain and tolerance.
And as I keep running, I ask myself, "Are we there yet? Did I get up the steep hill?". And crazily enough, the answer is "No. You're not even close".
It's becoming more and more difficult to drag ourselves out of bed and do the same thing day after day after day. I can barely stand to look at Stella any longer because it hurts my heart so much. She has completely lost any control of her body, it's like carrying around a sack of potatoes. Her head falls backwards when you lift her up, her eyes look left or right, but rarely to the centre where they can focus. Her legs hang limply, shaking uncontrollably. Her muscle-less arms flop around like fish on the sand. She has been able to say some words that last few weeks… "No" is still pretty clear, once in while she says "Gr" for Gracie and "Deck" for "Decorate" (which really is referring to the weekly Gracie sleepover where we decorate cookies and then sing Happy Birthday with candles). Other than that, she spends upwards of 13 hours a day sitting on the couch either staring at the wall, or closing her eyes, in and out of sleep. I look for her everyday, but it's getting harder and harder to locate my beautiful, spirited daughter in this heap of cancer that lives on my couch. This part is hard.
Since Stella was diagnosed almost exactly a year ago, Aimee and I have focused all of our energies and our goals around her quality of life. But now I realize how narrow my understanding of quality of life was. It was so easy to believe we were doing all the right things for her when we were eating ice cream for breakfast, going to the park anytime, having playdates, big birthday parties every month, letting her do whatever she wanted, whenever. But I didn't realize that at some point in this journey "quality of life" would mean nothing more than "pain free". And though I am eternally grateful that Stella seems content and comfortable, I cannot stand to sit day after day and watch her slowly waste away on the couch as the tumour continues to eat away at her brainstorm. The cold, hard truth is that Stella's quality of life isn't that great right now, and neither are mine or Aimee's. We are so lucky to be surrounded by an incredible group of friends and family that sustain us, but we are all hurting and we are all tiring and we are all struggling to manage our own emotions and fears. I see my own pain reflected back like a mirror in the eyes of those that love us, and I know that each one of us is struggling to keep going without pitching forward and giving up.
The constant hurt of seeing Stella sick makes it hard to do completely normal things. It makes it hard to go to the grocery store, which is full of little girls with curly hair running up and down the aisles. It makes it hard to go through Stella's drawers looking for a t-shirt and see the bathing suits, socks and sunhats from last year that will never be used again. It makes it hard to watch Gracie choose to play with Sam over Stella sometimes, because he at least acknowledges her and laughs at her antics and plays back whereas Stella mostly just sits silently her eyes half closed. It makes it hard to sit outside on the front porch and listen to the neighbourhood kids playing street hockey, riding their bikes, chasing balls. It makes it hard to know that Stella's peers are all getting together, running and laughing and playing in the park after Sportball on Saturday mornings. It makes it hard to walk the streets where we live, the same streets that I grew up on and that I imagined our daughter running up and down too. It makes it hard to cook dinner, knowing Stella can't eat any of it. It makes it hard to celebrate all of Sam's milestones…sitting up on his own, eating Cheerios, babbling…because for every function he gains, Stella loses one. It makes it hard to go to Zellers and walk by the kids shoe aisle where we used to pick out Dora running shoes. It makes me enraged that Stella should be in all these places with us, with her friends, but instead she's on the couch dying.
Maybe I'm projecting my own feelings, but I swear sometimes Stella looks up at me with her big blue eyes, my face just inches from hers as we breathe the same breaths on the couch, and I can hear her in my head asking me what is happening to her body, why she can't do anything anymore, what am I going to do to make it better? I look at her and I know that Stella is completely dependent on Aimee and I and our friends and family for everything---food, drink, bathing, diaper changes, entertainment, joy. I see that she trusts me implicitly and trusts that whatever is happening to her body, Mama will fix it. But I can't fix her. I remember the days when I could fix any boo-boo with a loud kiss and sometimes a Sesame Street Band-Aid. But this time, I can't do anything but sit and wait and watch and it's the worst kind of torture you can imagine.
Like any parent, I like to brag. I like to come on here and write about the amazing and special things that Stella has done and taught us. I like to remember how incredibly alive she is even as she lay here slowly dying. But today, all I feel in my heart is pain and exhaustion, and I can't see past my own blinders of tears to come up with something good or inspiring to record and share. Today it just hurts. And that's about as honest as I can get. There are some days that are great, some that are good and some that just rip you to shreds. And the last few weeks have been the hardest so far.
I sometimes try to put things into perspective, and remind myself that there are lots of horrible ways to die. I watch the news and hear about children who have been viciously murdered, whose last moments on earth were filled with pain and terror, I see those Sunday morning "Save a Child in Africa" commercials where children are starving to death, I remember the war and famine and violence in the world and I try to tell myself that we are lucky that Stella has had such a beautiful life, full of nothing but love and smiles. But I also know that my daughter is being forced to die in a horrible way. Other parents whose children have died of DIPG all tell similar stories of the heartbreak of watching your child lose their functions one by one. There is no easy way to say it--- it's horrific and I hope feverently that one day there will be a cure so that other parents will be spared this awful path. There are lots of terrible ways to die alright, and DIPG is one of them.
And so, I find myself desperately caught in this complex web of hopes and emotions, wanting to cling to my daughter with all my might, not able to fathom a life without her beautiful smile, yet also wanting it all to be over so that I don't have to watch her suffer anymore, and don't have to walk this path of suffering with her, feeling every lost moment in my soul like a knife.
Her smiles are so few now, but they still flash from time to time, lighting up the room and giving me the extra bit of strength I need to keep running. But the sad part is, at the end of this race there is no trophy, no victory, no joy or pride at having finished. There is only a black wall for me to hit head on, where Stella is gone forever, and I'm not sure what lies behind the dark brick blocking my view of the future. I know Aimee and I will get to a good place again someday, and it's that knowledge that keeps me going. But the way to get there is terrifying.
Do me a favour--- if you are lucky enough to have one, give your child an extra squeeze tonight and no matter how mad they make you tomorrow, remember that there is at least one mom out there who would give her life to feel her child hug her back one more time.
Off to the couch now…gotta keep running.
Auntie Heather feeds Stella ice cream under the tree on our front lawn:
Mommy and Stella:
Brad serenades Stella:
Gracie cuddles with sleeping Stella: