The United Church Observer arrived in my mail yesterday and I spent the early part of my evening perusing the magazine while listening to Matthew’s music therapist belt out If You’re Happy And You Know It.
The final page of the magazine is always a brief vignette; a spirit story. This month’s narrative tells the story of a Christmas vigil at the hospital bedside of a beloved family member. We know by the end of the second sentence that the situation is palliative. It took me a few minutes to understand that the beloved family member is a child with special needs. I don’t know why. The fact that the oxygen tube was propped upon a teddy bear should have given it away. I have done that with Matthew. By the end of the article I was in tears.
It is a short, yet profoundly moving, story of a family who spends Christmas Day sitting with their little girl in hospital. The family tells of eating turkey and samosas in a hospital room at Sick Kid’s in Toronto. Presents are opened and one young family member proceeds to play with her little ponies, marching them up and down the quilt on the bed beside the little girl.
As I read the article I was amazed at the family’s willingness to share such a profoundly intimate moment. It is a situation that I live in fear of. When one parents a medically fragile child one hears often that such a situation is not only possible, but indeed expected. You just don’t know when it will happen.
But then one sentence jumped off the page and the article seemed to speak directly to me. The author tells of the family pulling open Christmas crackers and finding a collection of yellow Christmas hats. Coincidentally yellow is the colour worn to honour microcephaly, the little girl’s condition. The author describes the moment as, “a funny Christmas miracle. Strange that there can be some miracles but not others”.
Strange that there can be some miracles but not others. I was so grateful to read that sentence. It was refreshing to hear those words from someone, particularly someone in the church, and someone you “gets it”. Sometimes our prayers are not answered. Sometimes the miracles we desperately want are not part of the story. Sometimes we have to find our own subtle miracles amid a journey of overwhelming pain. Sometimes the God you are told, and believe, is ubiquitiously present seems remarkable absent.
For me this seemingly silent God became one of the biggest sticking points during my existential crisis of faith. People talked, often, about prayer and about miracles. I was assured that if I prayed hard enough that God would answer. Things would be okay. Baloney I thought. Sometimes you pray and God is silent. Sometimes you pray and it still hurts.
Stories shared amid my faith community often featured happy endings. God’s blessings and faith triumphed. Prayers were answered. Peace was found. I struggled to process these messages amid my own journey that did not seem to correspond to the prescribed narrative structure. Happy endings, at least for long stretches of time, didn’t feature in our story. Matthew did not surprise health professionals. In fact his disabilities and medical issues were, and are, more complex than originally predicted. He lived for years with significant suffering before we successfully addressed his chronic pain. It was awful and there were many moments I genuinely wondered if his death might come as a blessing. As the years progressed and my world shrank thanks to ongoing caregiving responsibilities I found I could no longer go to church and listen to congregants talk about God answering prayer. In our story God seemed particularly silent and I became annoyed at theodicies that focused on defending God, particularly amid the indefensible: the profound suffering of a child who could not understand or influence their suffering.
Reading this article was therapeutic. Sometimes the miracles we need are not on offer. Sometimes we have to find peace in unexpected places – like a paper yellow hat. And sometimes there is only sadness and The Sacred is with us in the sadness.
The little girl’s name was Daisy May and she died a week after Christmas 2016. I felt it was important that we know her name. My gratitude to her family for sharing their story. My condolences as well.