Miracles

December 17, 2016

 

 Callie and my father in 2011.

 

 

With the story of a child born in Bethlehem and the miracle of the Maccabees with the wick of the menorah burning for 8 days as they fought off the Greeks, this is the season of miracles.   

 

This time of year, there is so much talk about miracles and yet, I believe we misunderstand miracles.

 

Miracles do not happen simply because we want them to happen or we are good people. Miracles will always surprise us.

 

The truth is that miracles must be earned, and they require immense bravery, diligence and just the right amount of insanity since the prerequisite for all miracles is believing in the impossible.   And so, getting a miracle often means rejecting logic and rationality in the pursuit what is not supposed to happen.

 

When Cal was diagnosed, I remember how a nun named Sister Alice at the Children's Hospital of Philadelphia, who worked in the hospital's ministry, tried to comfort me by telling me I needed to believe in miracles.  The idea that Sister Alice, who had spent decades working at CHOP and had witnessed so much suffering, could believe in miracles made me question Sister's sanity.   My daughter was going to die. All I could see was grief and loss and the idea of hope made me ache. Cal's diagnosis had showed me the true nature of the world: miracles are not real.

 

It would be two years after Cal's diagnosis when I would understand what Sister Alice meant. My late father, who was deeply religious, had been angry with me for accepting the doctor's predictions about Cal.  He longed to believe a miracle would save Cal. I was angry with my father for not accepting science and the truth.

 

The note that changed everything for me was an email from a doctor in Omaha, Nebraska, who was writing to me about two children named Giovanni and Cecelia Price.  I had written to ask the doctor's opinion about a gene therapy to treat MLD.  Cal's doctor, Amy Waldman, had encouraged me to use the money we had raised from selling cupcakes  to help families get to this clinical trial in  Millan, Italy.  Dr. Waldman had been so impressed by the preliminary results published in  the journal Science.  As a scientist and a doctor, Dr. Waldman was convinced she could vanguish leukodystrophy one day. To Dr. Waldman, miracles would take dedication and thinking beyond what was possible, but, she believed, curing Cal's disease would happen.

 

I thought Dr. Waldman was overly optimistic and she had, most assuredly,  overestimated my bravery. If I could not save Cal, I could not see how I could help another child. But Dr. Waldman, believed in my courage when I did not think I had any.

 

The truth was, I did not want to believe in this treatment, it was heartbreaking to imagine we had missed our chance to help Cal. Besides, everyone had heard the stories about gene therapy, it was dangerous and had killed that boy at the University of Pennsylvania. Using the HIV virus to correct a broken gene sounded like madness.

 

So when I wrote to that doctor in Omaha, I had expected to hear skepticism and caution.  Dealing with doctors, I knew they were trained to  manage expectations. Hope is something that must be dispensed in carefully measured quantities. In  the leukodystrohy world, hope was not a word most doctors used. 

 

And yet, the email I received that day was nothing I could have imagined.  It read:

 

I sent Giovanni to Italy about 3 years ago and he is still asymptomatic. As you know, this is indeed a miracle. He was the second MLD child ever treated with gene therapy and he is still running around and playing like a normal boy. Now I look forward to Cecelia responding equally well when she gets treated. 

 

Here was a doctor telling me that this was indeed a miracle. The thought of a miracle and Cal's disease being used in the same sentence made me dizzy.

 

I emailed Giovanni's mother Amy and asked her to send me a photo of her boy. Within minutes Amy replied, she apologized for the quality of the image and that she could not record a video. But, in the photo was a smiling, handsome Giovanni, standing in a place that looked like his yard and he was with another boy, his friend, I guessed, and Giovanni was holding a scooter. The boys had been playing.

 

Cal and Giovanni were the same age and had the same disease. A child with MLD standing, playing outside with a friend, and holding a scooter should be impossible.

 

Then something happened to me, it was this overwhelming sense of witnessing something amazing and truly miraculous.

 

Can I tell you what it feels like to witness a miracle? It hurts, it is this electric shock of pain, that isn't unbearable and passes quickly. This new pain makes you forget how to get air in your your body, and you can't move.You feel as if you are floating away even though you can't control your muscles.  And, as you take in the truth of a miracle, the dull, throbbing pain of every day watching Cal with this disease ends, and gets replaced by this sense that nothing else matters because you have seen something you believed was impossible. And you feel something divine and beyond you and you feel like more than yourself, but, not yourself at all. And, for a moment, I could see that Cal's suffering would change the world, and that there was some purpose in it all. This was more than me and Cal and my family...it was every child who had come before her and would come after her. I didn't feel like I used to before Cal was sick, but I was calm, and happy, even with the awareness of my grief.

 

That day I ran out of the office and I spent an hour preparing a box for the Price Family. I included cupcake stickers, buttons, t-shirts, wristbands, an i-Pad for the long months in the hospital so Amy Price could communicate with the outside world when Cecelia was on isolation, and a check to help them pay for their expenses in Milan. That cardboard box which had sent Cal her medical supplies was now carrying our investment in a miracle.

 

During these holidays celebrating miracles, I find myself longing to see my father to tell him he had been right about miracles all along and that Cal and our family get to be part of one of our own. The last time I saw my father, he was dying of cancer and he told me how Cal had come to him as a vision, he was convinced she was an angel.  Dad was hallucinating but he knew this was real, and he begged me to believe him.

 

Sister Alice and my father are both gone now.

 

Sister Alice died from a heart attack in the garage at CHOP where she had spent her last day ministering to families and children as she had done for so many years.  The last time I had seen her she had given me her card, she promised we would speak about how best to help the children like Cal. How pleased she would have been to see the Leukodytrophy Center of Excellence at CHOP with 35 specialists and funding dedicated solely to the care and treatment of children with Cal's disease.

 

December 27th is the third anniversary of my father's death, just a few days after Cal's birthday on December 23rd. It is a miracle for Cal to be celebrating her 7th birthday this week; that would have pleased my father so very much.  He would have enjoyed reminding me of his favorite dig about doctors : "The only thing you know for sure about doctors and their predictions is that they will be wrong."

 

How I long to see Dad and Sister Alice and tell them they were right and I was so very wrong.  I am still sad, but I am not nearly so angry because everyday our family and the foundation Cal inspired gets to be a part of the work of the doctors, researchers, families and children who have made it possible to witness miracles and play, a very tiny part, in creating them. 

 

 

 

 

 

 

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