Yesterday we attended a memorial service hosted by the NICU staff in memory of the babies who have died in the last year. It was a really nice service--a mix of readings, reflections and music, all with a contemplative, comforting tone. They read the names of all the babies and presented a rose to each family who attended. One of Will's doctors shared some thoughts about caring for our children and the impact each one made on him and all the staff. He said he knew we all had holes in our hearts and that his words would not patch them, but he let us know that the staff too feels that emptiness and wishes there had been more they could do. It drives their research, he said, propelling them daily toward potential answers to the riddles of prematurity and neonatal disease. We knew all along from our interactions with the NICU staff that they were all just as committed to Will's life as we were. It was nice to hear that on some level his life still touches them. He is no mere statistic.

I also realized for the first time yesterday that the question, "How are you doing?" no longer brings me up short. I can answer "OK" and not feel phony. I'm sure I've been doing it for a while, but it took that context, hearing the question from Will's caregivers, to bring it to a conscious level. It's not that people don't ask about us anymore. Lots do every day. Sometimes the question is clearly about how we're actually coping. Other times it's more of an idle inquiry, not really seeking a detailed response. Sometimes I don't focus on the difference. But yesterday it was clearly a question of concern, from people who haven't seen us since the most devastating day and week of our lives. Just as we may remember people from high school looking and acting exactly as they did on graduation day, despite the passage of time and onset of maturity, until they saw us yesterday, many of the staff probably held a vision of us in their minds as helplessly grief-stricken, paralyzed at the thought of going forward without Will.

We are still grief-stricken. There's no question. Any number of memories and scenes replayed in my head can reduce me to full-body sobbing. Even writing this blog brings tears almost every time. But we're not helpless and we're not paralyzed. Like others who have walked this road before us, we move forward as we can or stand still when we need to. But we incorporate our experience into our new version of "normal" and we know that we will be OK.

I received an e-mail solicitation today from Dr. Jennifer Howse, who is the president of March of Dimes. She talked about the specific needs March of Dimes is meeting in the Gulf Coast region, helping premature babies, their parents and expectant mothers as they deal with Hurricane Katrina, the flooding and its aftermath.

Mary and I immediately had the same idea, and decided to donate $500 of Will's memorial fund to March of Dimes for its work to help those dealing with the hurricane. We are in the final stages of determining how to disburse the funds we collected, and this fits well with our desire for the money to have as large an impact as possible. As I mentioned in the post below, we know how difficult it is to have a baby in the NICU; to deal with that and the loss of a home or loved ones is unimaginable.

To find out more about how the March of Dimes is helping those in need, go here. This was all I needed to read to know we needed to help: "We are providing support and comfort to families of more than 100 sick and premature babies who were transported to the neonatal intensive care unit (NICU) at Women’s Hospital of Baton Rouge, Louisiana." Will was one of about a dozen babies in the most intenstive part of the University of Iowa NICU, and we saw the amazing amount of resources it took to care for that many in what comes as close to being an ideal situation as possible.

When we finalize our plans for the rest of the fund, we'll report it here. For those who wish to contribute to the March of Dimes effort in the Gulf area, see the link to the right.

As if the news coming out of New Orleans these days isn't scary enough, the stories dealing with hospitals -- neonatal intensive care units in particular -- are downright horrifying. As with any intensive care units, NICU's depend on electricity. When it goes, things can go bad in a hurry. Mary and I read reports all week about NICU nurses needing to hand-bag premature babies because ventilators weren't working. Fans needed to be aimed at beds to keep them cool in un-air conditioned 90+ degree heat -- Will, in contrast, was always in a precisely controlled warmer bed -- and, perhaps most distressing, parents were evacuated and told to meet up with their babies later in the week at hopsitals out of state. It was hard enough leaving Will's side for a few hours each day to go to work; I can't imagine being able to leave him in those conditions.

From stories like this one, it sounds like things are getting back as close to normal as possible right now. Just when you think your own situation is nearly unbearable, you are reminded that things can always be worse.