Dear Jesse,
Before you were born, 19 days didn't seem like a very long time.
And then you came in so challenged to even breathe, your heart one open chamber right in the center of your chest, and changed for me the very nature of time.
Because you were born at night, your first day was only 55 minutes long.
On your second day, you had open heart surgery, and if we measure the passage of time by the significant events that we experience, you had already done more living in 24 hours than I had done in thirty years. The rawness of that realization took my breath and humbly sent me to my knees.
By your third day of life, "day" and "night" no longer existed, and I had learned not to watch the machines for a sense of how you were doing. Women wiser and more experienced than I, those nurses whose ministrations seemed more calling than profession, focused my attention on you and said, "Leave the machines to us." When alarms would sound, Dad would smile and whisper to you, "It's just a truck backing up."
We started singing to you after a few days, because "how can I keep from singing" those songs that your Dad had written like a missive to our future selves? From the moment I met him, I knew that your Dad was a prophet, but only when we started singing to you his songs, written years before he had even met me, did I fully understand what he had been preparing us for.
Remember this one?
"On wax wings of fire,
I climb
Higher and higher.
Before diving to the sea,
effortlessly.
And I know
that I won't live
forever.
But I'm gonna sing a song,
before I go.
And when the wind is crisp and clear,
my thoughts
well
they follow my ears.
To the desert of my dreams,
where my inspiration streams.
And I know,
that I won't live
forever.
But I'm gonna sing a song,
before I go.
I try to speak my mind,
and embrace the sound.
Dig down in my soul,
when nobody is around.
Oh,
but it's scary.
Oh oh,
the hope
I have found.
And when my day comes,
I won't lay down.
I'll pick up this guitar and strum.
Til the nighttime washes over me.
Then I will be free.
And I know,
that I won't live forever.
But I'm gonna sing a song,
before I go.
On wax wings of fire,
I climb.
Higher.
And higher."
Four or five days after you were born, I had to be taken to Brigham and Women's Hospital because I was hemorrhaging. A lesson a mother learns the hard way: I can't be there for others if I don't take care of myself. Of course, your Dad was amazing, a rock. I know that he was terribly frightened, facing his deepest fear, but he stood strong, got me the best care, and tended to me with gentleness and love.
A week into living with you at Boston Children's Hospital, I realized that I could not, for one moment, defer living. You placed me in the perpetual present and left me there. As difficult as it was at times to face the loss of the fantasy of past and future, I am so grateful to you for giving me the gift of Now.
One evening, a little more than a week after your birth, a new nurse asked me, "Do you want to hold him?" as though it was something we had been doing every day. I was stunned, and I said, "Can I?" She held her tongue, but I could see that she was disappointed and even a little angry that no one had yet thought to create an opportunity for us to hold our son. It took a great deal of work, shifting wires and tubes, but then you were in my arms and I was the happiest I had ever been. I cried with great relief and joy, and your Dad and I sang, and I smiled so much my face ached. I will never forget cradling you close in the rocking chair, breathing in the scent of your newness and singing, "Boom boom, baby goes boom boom, baby goes boom boom now. We all cry, everybody does it, everybody boom booms now.." over and over, like a mantra.
Eleven days in, on Valentine's Day, we received news that a local artist had arranged a benefit concert at Fire & Water, in your honor. At first, the thought of leaving your side felt impossible, so we told our staff of volunteers not to expect us. But then your Dad and I talked about it and decided it would be like taking you on a day trip and giving the people back home a chance to come to terms with what we could see was happening. We knew intuitively that you weren't going to be staying, and we wanted to bring others closer to this understanding, and closer to us. So, we left you with your nurse Jane, knowing that you could go while we were away, and drove west in the van we called "Home." We assumed that no one would show up on a frozen February night, but when we pulled up to the back door of the cafe and climbed out of the van, a young guy leaning against the doorframe said, "Good luck getting in there. It's packed!" Your Dad and I walked through the door, and the room got very quiet. People parted to let us pass, offering hugs, a squeeze of the hand, a smile. Dad was as shocked as I was to see all of those people gathered in support of you, of us, and we held onto each other to keep from falling. It was a night full of love, the real kind of love that seeks only to nurture spiritual wellbeing. I was awakened by the outpouring that night, as a room full of strangers showed us that we had indeed accomplished our goal of building a community around you.
A day or two later, the doctors told us that you needed another procedure, which they believed would allow you greater blood flow and provide you with more oxygen. We consented, preparing ourselves for the possibility that you would not survive it, but hopeful that it would bring you greater ease and maybe get you off of the ventilator.
The procedure went very well, but, two days afterward, it became evident that the removal of the obstructions was now causing too much blood to rush to your heart. Your chest was filling with fluid and the doctors had to insert drainage tubes in your sides to deal with it.
A few days later, you developed an infection which quickly became full-blown sepsis. Your Dad and I could see that you were working so hard just to stay with us, and one evening, you opened your eyes and looked first at Dad and then at me with a gaze that galvanized our resolve. Later, in the privacy of the room we had borrowed from friends, we spoke and realized that we had seen the same thing in your eyes. We had both felt you saying, "Haven't I done enough?"
The next day, the doctors affirmed that you were, indeed, very sick, and told us that although they could try to do more to help you stay longer, it seemed that you had gone as far as you could go. Your Dad and I quickly agreed that when night came, we would remove all the tubes and wires, and sing you out. When the nurse removed your breathing tube, you opened your eyes and looked at us, and your face glowed like the full moon on a crystalline night. Later, I fell into bed and felt your spirit flood my body, felt that I was you lying inert on that hospital bed, my limbs limp and sprawling. I slept deeply that night for the first time in weeks, and dreamt of other lives, distant and overlapping.
Our moments with you were so long, Jesse, and every day felt like a privilege so great that I could not imagine being given, or even wanting, more. Never before had I been so alert. No detail escaped, and this careful attention to every moment altered time as I had previously known it. I am well aware that people believed we were living their nightmare, but, honestly, we were blissfully happy being there with you. Sitting by your side, holding your hand or cupping your fuzzy head, singing to you, was all of life. You came streaking through this world like a comet, your bright message of love indelible.
My beloved Jesse, I have been living those 19 days for 19 years, taking every available opportunity to tell the people I meet something I learned from you: when every moment is sacred, 19 days is an eternity.
