Last Sunday, I stood before the congregation at my Church and I spoke about Stella. I told a few stories about the kind of kid she was, then talked about how absolutely amazing our community was for coming together and giving her such an incredible life, and I finished by encouraging people to remember those who have died and to give thanks for them and all they brought into their lives. Afterwards, the Church Choir sang “Thank You For Being a Friend” (theme song from Stella’s beloved Golden Girls TV show), and I sat in the pews surrounded by friends and family and cried a river of tears for Stella.
When Church was over, several people came up to me and shared their own stories of grief and loss. One man said his brother had died of cancer ten years ago, in his mid-thirties. Another woman told me she had lost a baby as well. Several people came up and hugged me and thanked me for sharing our story. Just as I was backing out the door with my coat on, an older lady beelined towards me, grasped my hand and looked right into my eyes. Urgently she said to me, “You didn’t talk about how angry you must have been at God. You didn’t tell us how you learned to forgive him”. I was caught a bit off guard and just stuttered something about how everyone has to make peace in their own way, but as I walked home a little later the conversation stuck with me. I tried to remember if I had ever been angry at something or someone specific. I know I have been angry. Blind, hot, red rage has coursed through my veins threatening to spill out of my pores in a fiery explosion of hurt and pain. But I’ve never blamed it on anything specific, least of all God.
The thing is, peoples relationship with any type of God is complicated and individual. I personally think of God as a manifestation of the energies of the world, a figure who is there to comfort and bring Peace but not some almighty Dictator. I believe God lives in all of us somehow, and is revealed in the good things we do for each other and the way we live our lives. It used to drive me absolutely crazy when well-meaning people would tell me or write to me, “I’m praying for a miracle” or, “Doctors aren’t in charge, God is in charge” or, “Don’t lose faith. God can heal and save your daughter”. Three times I had people grab Stella’s head and pray to God to heal the tumour within. One person even released her head after a moment (she was wiggling and whining) and said to me, “There. She’s healed”. I just looked at them in disbelief. I didn’t believe that God was going to swoop down and magically cure my daughter anymore than I believe he swooped down and put the tumor in her brainstem to begin with. Cancer is a medical issue caused by the uncontrolled division of abnormal cells. In the case of DIPG, it is random and unexplained. How could I ever put my faith or love into a figure that I also believed would give my child such a horrific disease? It makes no sense to me. The God that I believe in is not one that would randomly choose to “save” those who are faithful and punish those who are not. The God I believe in does not practice favouritism. My God would not purposely allow innocent children to be hurt and abused the way many are. The God I believe doesn’t micromanage the world from some fluffy cloud in the sky. My God is nurturing and defies definition or expectation. In Church each Sunday, the congregation greets each other and sings: “The Spirit in me greets the Spirit in you Hallelujah God’s in us and we’re in God, Hallelujah!” That is how I see God— within each of us.
So while I have been angry, I have never been angry about God. Instead, I’ve been grateful. Because the selfless generosity and abounding love we experienced during Stella’s illness is where I personally found God. Peaking out between the layers of icing on homemade cupcakes. Hiding in the well-used DVD player. Looking over my shoulder as I read King Hugo’s Huge Ego for the 1000th time. Singing the Golden Girls theme song loudly and off-key with our sisters Heather and Andge. And through my own experiences, I know S/he is beautiful and nurturing and powerful.
There is a DIPG blog that I’m following right now which speaks constantly of God’s ability to heal the tumor. The young person in question is sure that they will survive DIPG because of a strong faith. It makes me sad to read, because I know how this story will end. I wonder if when the tumor does overcome this girl, if the family will feel betrayed by God, or if it’s them that will be left feeling angry. I wonder if their denial and hope is a good thing as it is allowing them to live as though they have all the time in the world. Hope for survival is a powerful opiate, and Aimee and I never had any. With Stella we lived everyday as if it were here last, ice cream for breakfast and Dora The Explorer all day long. It was fulfilling, but exhausting to try to enjoy every single second of the day, knowing each breath and giggle and sigh was precious. This girl with DIPG is still going to school around Doctor’s appointments and eating her veggies. Is one better than the other? No, but I believe the experiences are very different. I don’t believe Stella was “chosen” to die at 3 1/2, but I do believe that we had a choice in how to live out her last days and I’m glad we did it the way we did.
While I sat in the hard wooden pew on Sunday, I took a moment to look at some of our closest family members and friends who made the effort to be there to hear me speak about Stella. I continue to marvel at how selfless they were to choose to spend time with us and allow themselves to love Stella, even knowing what the end result would be. I have one friend— a best friend, the kind who you told everything to and had a decade of belly-laughing memories with— who disappeared when Stella got really sick. It was too difficult for her. It hurt too much to watch me fall apart emotionally and bear witness to Stella falling about physically. So she walked away. She didn’t even know that Stella had died until two months after the fact because she buried her head so deep in the sand we ceased to be part of her daily thoughts. She didn’t ask about us, doesn’t read the blog. In the last year, she has reached out to me a few times via email. In her emails she says all the right things, and apologizes for her absence. She says she wants to rebuild the friendship.
And I keep deleting the emails.
I thought I could forgive, I thought I had forgiven, but I can’t. When I read her words, all I can think about is how she wasn’t there when I needed people around me the most. I can’t help but compare to all the people who were here. Whether we asked or not, they just showed up. My gratitude and admiration is reserved for those who continued to care, who continued to come and visit, and allow their children to have a relationship with a little girl who they knew was going to die. I am in awe of the people who agreed to have their hearts break with us, and who accepted the deep pain and sadness that came with being part of Stella’s journey. They laughed with us, they cried with us, they shared our intense pain and when we were too broken to function, they stepped in and held us up until we were ready to stand on our own two feet again. These are the people I want in my life. This is the way in which I feel “God”— in the words and actions and love of those who walked with us, even when the road got hard. I just can’t accept the people who took a shortcut, waited at the end and now are there, saying they’re ready to join us again. It feels too much like cheating.
I believe that Stella’s life and death made me a better person. She taught me how to prioritize, how to appreciate the small moments in life. But I am still a human being, and I am far from perfect. I still cannot forgive and forget everything. I still cannot pretend to be someone I’m not. I still cannot always say or do the right things. A few months ago one of my friends lost her step-father. I wanted to send a nice card, to bring her a meal, to be there for her the way she has been there for me. Yet I did none of those things. I barely acknowledged the loss. I don’t know why, I just got busy with the kids and school and life and didn’t get around to it. But I should have. I should have made time. I am still struggling to change.
A year after Stella’s death and over two years since her diagnosis, I am still learning. Still hurting. Still growing. Still healing.
And yes, sometimes I am angry. But that may not be a bad thing. Malcolm X said, “When people are sad, they don’t do anything. They just cry. But when they get angry, they bring about action and change”.
So I embrace the anger the same way as I embrace all the other emotions. And I celebrate my God— the one who I can feel hugging me when the sun hits my shoulders. And I hope and dream and laugh and cry. In short, I do what Stella taught me to do most— simply live 100% each day.
Stella lit up the Church on Sunday (photo by John Reston):
Sam and Xavier had a joint second birthday party!
Gracie and Hugo: