Wednesday, January 26, 2005

We had a memorial service for Will tonight, and were overwhelmed by the friends and family who attended. We were particularly moved by seeing so many of the people who cared for Will, who came to feel like members of our extended family during our three-month stay at the NICU.

Mary and I each read something during the service that expressed what Will meant to us:

I can't remember a time in my life when I didn't know that I wanted to be a mother. I watched my mom seamlessly manage the lives and needs of her children and knew I could do it too if I just followed her example. I had only an inkling of awareness of the depth of love I would feel for a child of my own, but even that small amount was enough to make me feel I would burst with happiness the day I learned that John and I would become parents.

As with most things in my life, I made meticulous plans about how we would prepare for his arrival and what we'd do once he was here. I signed up for childbirth, parenting, and breastfeeding classes. I read all I could about cribs, car seats, and strollers. I planted tulips and daffodils that would come up just as we were ready to venture out after spending a few weeks inside getting used to each other.

Will's early arrival turned all my plans on end and forced me to focus on each single day. No planning. No long views. Just each day, each hour, sometimes each minute. I never had any idea what was coming next and had to brace myself for each new emotion as it washed over me. Joy. Pain. Fear. Anxiety. Impatience. Confusion. Triumph. Defeat. Love. Love. Love. Will gave me the gift of time. The only thing that mattered during those 12 weeks and four days was how many hours I could spend at his bedside before collapsing into sleep in my own bed back home.

Will taught me to be a mother in ways I never imagined. Instead of a diaper genie, we had a diaper scale to keep careful track of every cc. Instead of him falling asleep in my arms, I passed out at his bedside the first night I was allowed to see him. Instead of listening for his cry, I had to watch closely. There was no sound, but I soon learned how to tell when he needed me and when he needed someone more expert. I knew to draw his flailing arms close to his body, bringing his hands to his face. I knew not to touch his sore little feet, but to place a finger close and let him push if he wanted that contact. I knew how comfortable he was on his tummy with his little knees tucked up under him and one hand on his cheek.

And I knew in the end that he just didn't have anything left for the fight. So many times John and I told him that if there was anything we could do to take away his pain we would. We didn't know, or chose not to think about what that promise really meant. I held him as he slipped away, knowing that in place of his pain would be ours forever. And that was the only thing I could do for him as his mother.

I still long to be a mother, but again, I must find my own path as a mother without a baby. I hold the memories of his tiny, perfect hands squeezing my finger; his eyes straining to reopen after being swollen shut for weeks; his chest rising and falling as he learned to breath through the ventilator; his blonde eyebrows, so like John's, barely visible against his forehead; the surprising weight of his tiny body in my arms, once while he lived and once while he died. All those things make me an invisible mother. I haven't spent a lifetime learning how to do this, but now I have the rest of my life to figure it out.

Goodnight sweetie. Mom and Dad love you very much.

--Mary


One of the first things the staff at the hospital had us do after they admitted Will as a patient was to have us fill out a form that asked many odd questions. Do you have running water in your home? Do you have reliable transportation to and from the hospital? How do you best learn information? We could confidently answer "yes" to those first two, but the third was a puzzler. How do we best learn? It offered suggestions, such as "reading," "hearing something explained" or "doing." Neither of us is overly handy, so we thought at the time that the first two might best apply depending on the situation.

Before Will was born, Mary would dutifully read through the "What to Expect When You're Expecting" books, getting ready to be a mother. For some reason, fatherhood was more abstract for me. I needed the baby in front of me before I could really concentrate on what it would mean to be a Dad. I tried to read the books, but without my baby there to reference, it was hard to grasp. Once Will arrived, however, I had to read everything I could get my hands on. I had to know everything about him, what made him tick, what he needed, and what to expect as he grew. "The average premature infant has little strength for moving arms and legs about," I would read. Ha! I would think. Will's got an iron grip already.

We also spent a lot of time discussing Will's care with his doctors and nurses. It helped to have the blog. We're both writers, and as such we know we grasp something when we can turn and explain it to someone else. In that way, we knew as much about Will's care and condition as anyone, and that deep understanding really allowed us to help him in ways that had never crossed our minds when we thought of what being a parent would entail. Never could we have dreamt that it meant telling nurses to put an IV far enough up his wrist so that he could still get a hand up to his face to comfort himself, or to give him a boost of oxygen before an unpleasant task like having a diaper changed, or to make sure they gave him the correct dose of the sedative that helped him through painful times.

At one point during all this, a former co-worker wrote an e-mail to say that she was having a hard time reconciling my warm, almost mushy blog posts with the reserved, cynical person she thought she knew. "Maybe I didn't know you as well as you thought I did," she wrote. "Or maybe," I replied, "I didn't know myself as well as I thought I did."

And I think that is perhaps the ultimate thing I learned from Will. Not only did I want to be a Dad, I wanted to be Will's Dad, and that meant opening myself up to feel things I never thought possible. How did I learn that? The entire time, I thought I was learning by reading as much as possible and discussing things with everyone I could find. What I know now is that I was really learning by doing. I was changing Will's diaper, getting so excited at seeing pee there that it was all I could do to keep from dancing. I was offering him a finger to grab to help him get through some painful procedure. I was doing what it took to be his Dad, and through that I learned the greatest thing of all.

--John