But, then, something happened this summer.
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 is this special world that only exists on 420 Conshohocken State Road.
But, you see, the problem is that 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 write reports. I will have to be around people who will complain how sad they are that their children don't clean their bedrooms or how hard it is to watch their children leave for college.
How my heart ached when I saw a mother scold her toddler for running away from her in the store. What I would do for Cal to run one more time. In my dreams Cal is in constant motion.
Because I will have to leave my bubble, there will be encounters with people who I thought were friends but have diligently avoided me over the last two years since "there was nothing I could say." Liz Scott warned me that when a child gets sick, you find out who your friends are. And Pat and I been wounded by the people who hid from us. To be honest, we were more overjoyed by the people whom we never guessed would stick around and faced Cal's fate with us.
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 other 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 in New Jersey, New York and Pennsylvania. The other issue was that CHOP was clearly such a major player in the LD world. CHOP needed our help to be a part of a gene therapy trial in the US....this was something everyone would want to be a part of. This would put CHOP on the map, and CHOP loves to be on the map. This was our interests all aligning.
I told Amy, this is bigger than selling a few thousand cupcakes. And she did not disagree.
And yet, as I return to teaching classes, and reading books, and looking at my students fall asleep as I lecture them about 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 wants 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 atmosphere 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 so we all can go on.