But, then, something happened this summer. I spent more time with mothers whose children were as sick as mine. I exchanged notes with women whose children had died. The questions that I had been to afraid to ask, were now spilling out of me. Now I could say, with an eery sort of calmness that in the most optimistic predictions Cal has just about three more years to live. And, to be sure, after last winter, there was no question that we are on borrowed time. The doctors and nurses caring for Cal published an article about last winter's crisis and in it, the lead author, a doctor from CHOP described Callie as medically fragile with a diagnosis of late-infant onset MLD, a disease where most patients do not survive beyond age 5. There it was in cold print. I was now co-authoring articles about a Cal. How strange this was to get a paper excepted in a journal of pediatric medicine. Publishing articles was something to be celebrated, now the only writing I do is abut my dying child.
This summer, has been wonderful, I took my trip to St. Lucia, my older children are beautiful and more extraordinary, my husband's cancer has not returned, and our garden blossomed with vegetables and flowers. Cal laughed and smiled every day, we hardly heard her cry all summer. Her nurses found a groove with her, and, it had been months since I needed to call the PACT at midnight on a Sunday.
Life is good. We had created the bubble around our family and only allowed people in who understood our world and made it sustainable.
It was this special world that only exists on 420 Conshohocken State Road.
But, you see, next week, I must re-enter a world with students and people who don't understand what I go home to. I will be asked to readjust to the atmosphere where most people live. People who are clueless and oblivious and will want me to give them good grades, and be on time, and do things. I will have to be around people who will complain how sad they are that their children don't clean the bedrooms or how they are sad their children have left for college.
How my heart ached when I saw a mother scold her toddler for running away from her in the store.
Because I will have to leave my bubble, there will be encounters with people who I thought were friends but have dutifully avoided me over the last two years since "there was nothing for them to say." Liz Scott warned me that when a child gets sick, you find out who your friends are. And Pat have been wounded by the people who ran away, but more surprised by the people who we never guessed would stick around.
This summer, I also witnessed a miracle, or the beginnings of what might be a miracle. And Dr. Waldman and I spent an hour talking, with grave seriousness, about how the cupcakes and Cal could save children. What would need to happen to get the Milan trial to America, how we could create a national database of all the children in the US with leukodystrophies and expand the research arm of Children's National to get the currently undiagnosed leukodystrophy cases a name for their disorder.
A 30k gift to CHOP would be a good start, but Amy was blunt, we would need much more money to get a national database together and prepare hospitals for the dozens of presymptomatic children who now would be seeking treatment with the new newborn screening. The other issue was that now that CHOP was such a major player in the LD world. CHOP needed our help to get ready to treat children, and since CHOP would very much want to be a part of a gene therapy in the US....this was something everyone would want to be a part of.
I told Amy, this is bigger than selling a few thousand cupcakes.
And yet, as I return to teaching classes, and reading books, and looking at my students fall asleep as I try to teach them why Emile Durkheim, Karl Marx and Max Weber are great minds that all educated people should know about, I don't want to argue with them anymore. When I see my students bored and restless with the challenging material, I will want to scream at them that they are not doing me any favors by taking time away from my dying daughter and that if they don't want to learn, why should we go through this charade.
When my colleagues talk about budget cuts and lay offs, I am so weary of pain and grief that I don't even have the energy to walk into the meeting to get the bad news.
There is a part of me that just want to leave a voicemail message and say, it's just fine, I will come and teach classes to kids who don't want to be there, collect my paycheck, and run home as fast as I can to hold Cal while I still can.
It is hard to explain to people living in the real world why wasting my time is so sinful.
So, I pray for the strength to survive my re-entry into the real world, where people will be blind to their blessings, and ignorant of my pain, and I will be forced to use every ounce of my strength to seem normal and okay and fine.