By Lisa Buell —

“Our family is more spiritual than religious,” I would say to those concerned.  I said it to many when our daughter was sick. Some understood, some were suspicious, all were very interested in our religious standing, as if our affiliation would somehow determine our destination. No matter how many times I was asked, however, there never seemed to be words to describe the connection, or lack thereof, with my “higher power.”

My relationship with the Lord is complicated, though it started out simple enough. As a child, I prayed for a bike and it later appeared!  I prayed that I would be a scholarship athlete and it happened – a full volleyball scholarship.  It almost seemed too easy, like God was the ATM of intention. I would hear about tragedies: avalanches, hurricanes, mudslides that would kill or injure dozens, maybe hundreds, of people, and I would chalk it up to “God’s Plan” or on a more primitive level, “population control.”

When I was in college, as a young woman looking to have it all – husband, kids, a coaching career – I thought I was a sure thing.  Imagine my surprise when, after becoming engaged to the man of my dreams, I ended up being a lesbian! This didn’t fit the idea of my perfect life, so I prayed.

Sometimes I prayed from night until morning, a quick one between classes, another before practice and still I was a lesbian. I felt as if I had been abandoned, the ATM was being serviced and I was out of cash.  So I took a break, went it alone, determined still to have my dream, even though it looked different from my original picture. Occasionally, I would sneak in a prayer here or there but for the most part the big guy and I weren’t really speaking.

For some, becoming a parent is a choice, for others an accident. For me, it had been a calling. Most of my peers became “women” at age 12 or 13, but at 15, when I still hadn’t, I prayed, begged and pleaded, promising I would never complain of PMS, just as long as I could have babies.

After my daughter Madison was born, I thanked Him for giving me such a wonderful gift, even though I knew she wasn’t really “mine”. From the moment she was born, after the doctor put her on my chest, skin to skin, I was in awe for all the obvious reasons: little feet, little hands, beautiful beyond belief.

But I felt early on that her spirit was somehow richer than mine, that she was here to do something bigger than anything words could describe. I had no idea that our lives would change in just a weekend, that my perfectly healthy baby would wake up one morning with bruising around her bottom because she was trying to pass a tumor, and that we would be on our way to Stanford Children’s Hospital.

During our first drive to the hospital, before the official diagnosis of cancer, we sang Maddy her favorite songs.  I almost didn’t want her fall asleep for fear she would never wake up. It was the longest trip of my life.  She did sleep, and during that time all I could do was hope, and pray.

And then the flood of guilt washed over me: God was punishing me! This was all happening because I was gay! How dare I think I could have it all!

I was convinced of this notion of punishment – until I stepped onto the pediatric oncology ward and saw all the other sick children and their families. In that moment, I knew God hated everyone equally.

I continued to pray because it was what I knew. I prayed because in times like these when life feels so arbitrary, you pull on whatever imaginary strings you can grab to make this puppet theater have a happy ending. I prayed because maybe it could make things right. I thought if I framed my prayer differently it would be answered.

During Maddy’s illness, in the middle of the night, before every treatment, surgery, procedure, and test result, my relationship with God continued to be complicated. A “healer” visited our home equipped with a seven-page prayer that we said over and over with him until it was memorized “Please Lord, thank you Lord, thank you Lord, thank you.” Deals were made, family fences were mended, and still my daughter was sick. I tried positive thinking, visualizations, blending Eastern and Western medicines, and still no cure.

There were so many things we couldn’t control, and at some point I switched my “prayers” to affirmations: “You’re a strong and healthy girl,” I would whisper in Maddy’s ear as she nursed. I was present and grateful for every moment we had with our beautiful baby girl, who grew into an amazing, mesmerizing, charismatic toddler, and I felt lucky to be one of her mothers.

I was grateful for the love and support we got from our community, our family and friends.  It was during those times when I saw God, I saw God in the faces of all the people who loved Maddy, who would do anything for her, for our family. They gathered in our house, came to the hospital, knitted blankets, brought food, played games, sang, danced and made our life full. Madison was on several prayer chains; we did saging rituals; we put crystals around the house; I even drank horribly smelly concoctions that were supposed to go thru my breast milk to improve her immune system. My Planter’s warts vanished, but still the cancer.

God and I weren’t speaking at the time of my daughter’s death and for many months after. Why talk to someone who doesn’t answer? I didn’t have the energy to hate Him; I just decided to not acknowledge his existence.

The only thing I did have energy for was television, and during my hours in front of it I couldn’t help but notice how often athletes, actresses and musicians would thank God for their victories, as if God somehow liked them more than the losers. Apparently He must have been too caught up in the Super Bowl to help our family out. It was all very confusing; I tried hard not to get caught up in trying to make sense of any of it, because some things can’t ever make sense.

My house felt like it was falling down, like at any time I would implode and disappear into dust. Other people, I noticed, still had religion and a place to go. Where did I belong?

My mind continued to spin. Where did Maddy’s spirit go? Her spirit, I knew, had been in and out of her body during the last days of her life. How could I get to where she was now?  All I could do was to keep her memory alive in my heart and the hearts of others.  I could sit and be still, see her with my heart, conjure up her scent and hold on to who I was before she left. I really didn’t like the person or whatever it was that I had become without her.

Finally, we made a conscious decision to have another child. When I was pregnant again, I made a promise to save my grieving for when the baby was sleeping. I was determined to keep my suffering from my child because it was my choice to have another baby.

When our second daughter, Delaney, was born, I felt blessed again. This time I said a quiet “thank you” to no one in particular.  Delaney was born strong and healthy. I became superstitious, overly protective. I understood that under the circumstances I had every right to be; I just didn’t want to slip into crazy.

When Delaney got a fever for the first time at a year and a half, she spent the evening sleeping on my lap, and I spent the better part of the night in sheer terror, cursing this so called “God.”  My arms weren’t too short to box with God; my threats pierced the night sky in search of my target. I swore at him for all the nights lost to fear, for the fight or flight response to a simple sneeze, for the feeling of abandonment, and for him taking my child instead of me.

Then I asked myself: Is this who I wanted to be – angry, bitter, hostile? Who am I hurting here besides myself? I sat there in the dark, transfixed on the rise and fall of my daughter’s chest, and I too began to breathe.

In that moment, I turned towards the light. I turned toward the glow of this beautiful little being that lay on my lap, helping to open what I had walled up and protected for so long: my heart.

My jaw began to loosen as I remembered the friends who made multiple trips to the hospital when Maddy was sick, bringing home-cooked meals, take-out Chinese and gossip-filled magazines. I remembered those who drove for hours so that we wouldn’t be alone. I remembered how they held our gaze and our hands during the hardest times. I remembered their spiritual, physical and financial contributions to my family.

A voice came: “Tell me that’s not God? Feel this baby you are holding and tell me… Remember the hardest and the best of times, and you will see me there.  I am the trees, the breeze and the lightning.  I am within the whisper and the yell.  Hear my voice, see my face in the face of all that is and ever will be.  I am in you, speaking as you.  There is no separation, no space where I am not.”

I released myself to the voice; I released the fear, anger and sadness that held my throat tight.  The tears fell.  In that moment, I realized that God is not something outside me; it is the energy that runs through us all. In fact, through my wife, my children, my community, God and I had been communicating all along.

Lisa is writing her first book, entitled  Call Button,  a collection of essays about the continuation of life in the face of treatment, navigating the waters of grief, celebrating communities and the clinicians who care. To contact Lisa email her at lisa@childrenshospice.org

Tags: anger, grief, guilt, hope