Miracle Girl

Miracle Girl
I have developed a disdain for religion. I suppose I should clarify that statement. I am overwhelmed by the depth of religious communities. The communities give me hope. Our family has survived Jordan’s Journey on the backs of our friends at All Saints Church. We have been touched by the generosity, compassion and love of people we hardly know, connected to us solely by the threads of association with our church. It is the community in the phrase “community of faith” that I cherish.

My quarrel is with G-d. I often curse him, frequently question his motives, constantly hold him in contempt. Sometimes, I get so mad and can’t find anything to say so I just throw him the bird. (Believe it or not, I was advised to do so by a priest some years back. His reasoning was that it was better to flip G-d off than stop talking to him altogether.) And yes, with the mess we have down here, I’m convinced G-d is a man. If G-d were a woman, I’d probably have less reason to complain. I’d probably have less reason to question whether or not She existed.

I worship at the temple of logic. And the problem with religion is that most of it is based on flawed logic. People believe anyway, until someone points out the giant gap in the reasoning. That’s when religion usually delivers the greatest insult of all. We’re told to have faith. It’s a mystery, we’re told. We must believe and have faith.


That’s where religion loses me. I ask simple questions. Why would G-d afflict my child with such a nasty disease? To teach her a lesson? Because it is part of a divine plan? What kind of plan? He’s a loving G-d, right? Compassionate? Then why select a child for his plan? What kind of sentient being would design this path? I have recently had reason to ask these questions again.

On Christmas Eve, Jordan lost a friend. Her name was Jenna. They met a year ago at a camp organized by CHLA for brain tumor patients. Jenna and Jordan were about the same age, with very similar interests. They both had older brothers, and Luc enjoyed playing with Jacob during the long weekend retreat. Both girls had endured surgery and long stays in the hospital. But Jenna’s tumors were far more aggressive. Unlike Jordan’s cancer–a big, slow bully–Jenna’s cancer was crafty, fast and dangerous. The girls were often hospitalized at the same time, but Jenna was usually isolated – the result of experimental, debilitating drug therapies that compromised her immune system. A couple of months ago we received word that Jenna was being sent home for hospice care. Her doctors exhausted all options, but the disease was too strong. On Christmas Eve, Jenna passed away at home with her family.

The news of Jenna’s passing saddened us all. Our thoughts and our prayers were with her family yesterday as we sat down to have our Christmas dinner. Jordan delivered grace. In her prayer she asked G-d to let Jenna have fun in heaven. She wished for her friend to find others who have passed on – people Jordan thought Jenna would like to meet. Ella Fitzgerald made the list. So did our cat Max and our dog Misha. I bowed my head and prayed with her, but inside I continued my combative dialogue with G-d. It’s an absurd discourse. I argue that I don’t believe in him anymore, but then … I’m speaking to him, so I must believe, no matter how much it makes me cringe. I must believe something or I’d feel perfectly comfortable writing his name in this post, which the bible says is forbidden. Then again, I imagine it’s forbidden to flip Him off. I guess He gets the last laugh once again.

In recent weeks I’ve found a new source of faith. It’s an odd feeling, not the least bit spiritual in my rendering of the definition. There are no visions of angels or profound meditations on scripture. I haven’t been born again and I certainly haven’t increased attendance at church. My new faith springs from the girl, from Jordan. All the logic and reason and science can’t explain her. It troubles and comforts me in the same wisping burst of revelation. She is a miracle.

Not three months ago, she lay still in a hospital bed, unable to eat or speak. She could barely communicate with us. Half of her body was paralyzed. She was plagued by seizures, some so strong they lasted over an hour. Even after she was discharged from the hospital, she was besotted by a heaviness. It weighed upon her, slowed her, made her distant.

That isn’t the girl in our house today. Watching her these past few weeks, I giggle and gush. During a holiday program at Luc’s school, I looked over at Jordan. She watched the show with intent, smiling ear to ear. When it was over, she ran to him in the foyer, cheeks raised with a buoyant grin, eyes wide with life. It’s a miracle. It is humbling, inspiring and frustratingly puzzling. It is also remarkably beautiful. People who know her stare with their mouths wide open. They watch incredibly as she dances, skips and chatters rapidly. She occupies her time hunting for springs of life, finding them readily and sharing them with those of us too jaded to remember how refreshing life can be when seen through the eyes of a child.

I don’t know where that puts me with G-d. He and I are anything but square. But maybe it doesn’t matter. Jenna’s passing has reminded our family to enjoy today’s blessings as they come, to enjoy each day with Jordan and marvel at the wonder of the girl we love madly. My faith is strengthened by her. She moves me to accept life for what it is – an inexplicable jumble of chaos often producing staggering results. Some call them miracles, I call it Jordan.