Ash Wednesday

Yesterday was (apparently) Ash Wednesday. This I discovered while leaving an elevator in Children's Hospital, when a flyer attached to a nearby post caught my eye: "Ashes available today in the interfaith chapel" it read. Ashes? Already?!

I was running late to Moriah's neurology appointment, so rushed there first. Only to discover that what I thought I was there for (an EEG of her brain) actually needs to be scheduled as a two-hour outpatient visit...at another time, of course. I'm not really sure why I met with the doctors yesterday, except to tell them the ACTH was done, that I haven't seen any seizures in three weeks, and to recall (for the upteenth time) Moriah's course of seizure activity. Oh, and for them to tell me that Moriah's left side responds differently than her right (something we've known about Moriah from her first weeks, but...ugh), which could be a result of a lack of oxygen when she had her heart defect (ugh), but could also bring back her seizures at a later date (I didn't even ask why, I was working so hard just not think about that). Basically, the long and short of the appointment was a bunch of warnings to keep a "close eye" on Moriah for seizure activity (even something as slight as rapid blinking), a hope that Moriah will be within the "eight-five percent" of "kids with Down's" whose seizures resolve, a reminder that she could possibly be within the "unlucky fifteen percent," and a lack of conclusion until after the EEG, as the neurologists couldn't "really tell anything" until after they saw the test. Of course, by the time I got out of the appointment, it was after five, and the EEG scheduling office was...you guessed it...closed. I left the neurology clinic (which takes up an entire floor in the Fegan building, and was a very sad place, let me tell you, the waiting room crammed full of kids with some serious neurological issues) very overwhelmed and beginning to feel very defeated.

So I did what any sane person in my situation would do...stopped in at CVS for a Diet Dr. Pepper and a bag of gumdrops, which I consumed during the (stop-and-go rush hour) ride home.

But I also did something a bit more helpful, though, I must say, only after I had bought the Dr. Pepper. I remembered the Ash Wednesday sign on my way out of CVS and went back upstairs, back to the interfaith chapel. Walking through the halls made me incredibly sad...realizing how I don't need to read signs in that hospital anymore, walking past the phone booth where I had a hysterical meltdown during Orilus' transplant days, past the Family Center where I met with our lactation consultant after Moriah's birth, past the garden where Orilus took his first tentative steps outdoors after weeks of transplant isolation. So many sad, painful memories there. But I kept walking, and opened the door of the chapel quietly.

There, on the floor near the door, was a Muslim woman on her prayer mat, facing Mecca (the location of which is marked in the chapel) and in prayer. Her diaper bag was beside her, and she looked up and smiled at me as I wheeled in Moriah's stroller and parked it near the door. I made my way to the altar and marked myself with ash. This, you understand, is actually not part of my upbringing. I was brought up in a "low church" tradition--the hand-clapping, arm-raising, drum-beating, guitar-playing rhythms of worship that pride themselves on being "new" and "untraditional" even as they seek mostly to recapture the passion for an anient, traditional faith. So it's little wonder that the "high church" traditions--the church calendar, for one, and traditions like ash and Lent--hold great attraction and meaning for me, even as I continue to love low church worship freedoms.

So I marked myself with ash and knelt to pray for a few quiet moments, as long as I could until Moriah began to stir. I thought of Jesus, and the cross, and my thought for the day, which was exactly this: The sadness and loss and fear are too great for my heart to contain. And I thought of all the emotion we see in Jesus through the biblical narrative, a way of showing that God can contain more emotion, can absorb and welcome and encompass more emotion, than I certainly can. And I thought of ash, and of returning to ash at the end of my life, and most upsetting, of Moriah returning to ash someday, and how that may happen sooner than I might like, given the shorter life spans of kids with Down syndrome. And I felt very, very overwhelmingly sad, and thought of Jesus, and His death, and the pain of that for him, and for his Father, and I figured in my prayer that God's heart could contain my emotion, and asked Him to do just that, since having a panic attack or getting depressed again was more than I could do. And then Moriah began to stir, so I wiped my tears and scooted around the lovely mom on her prayer mat towards Moriah's stroller.

And this is the last thought I had when I left the chapel: the solidarity I shared with that mother. Here we were, in worship and in prayer, seeking out meaning in lives that have both been obviously touched by pain and sickness. We both were carrying bags full of kids' stuff...bags we put down to pray, maybe in the way we were hoping to leave some burdens and emotion there, in the chapel, and to leave a bit freer than we had come. I pushed Moriah's cart around to leave the chapel, and the mother interrupted her prayers, stood, and held the door for me. "Thank you," I said, "bless you." And I left, feeling like we understood one another, understood that mothers most often pray while pushing strollers and holding doors and changing diapers and such. And that we pray because we must, because we are desperate to have God touch our children, and also, to make us strong enough to watch them suffer this life.

There are so many things I don't know. I don't know (in answer to your question, Tracy) how it is that ACTH could take away Moriah's seizures forever. I don't know if they will come back, tomorrow, or in a year, or later. I don't know how I didn't know that yesterday was Ash Wednesday, when usually I care very deeply about the passing of time. I don't yet know how I will observe Lent, which I like to do every year, even though those in my church tradition do not. Usually we are supposed to "give up" something. In the past, I've given up candy (which, obviously, is not going to happen this year) and things more serious and meaningful, too (though, if you know me, you know that giving up candy really is a big business). This year, I'm thinking that I need to give up. That I need to to somehow find a way to surrender more profoundly...to this new suburban life, to Moriah's diagnoses, to the career I miss and the life I used to lead. And, mostly, to a new trust that however painful this life can be, God's heart can be trusted, trusted for its bigness to hold all this life will bring me, all the losses we've endured, all the new and beautiful and awful things ahead. How to make that surrendered journey in these forty days, to make it intentional and actual and genuine, these are the things I do not yet know.

I'm not sure how you spent your Ash Wednesday. In retrospect, if there is any light about such things, I'm glad I spent mine surrounded by suffering children. This, after all, is the meaning of Lent, that Jesus can meet us in our suffering, not just as a higher-than-all-else king, but also, as a co-sufferer, an empathizer, and a great comforter.