After several weeks of putting it off, we went to meet Friday with Dr. Colaizy to go over Will’s autopsy. It was an emotional trip from the start. Her office, and those of all of the neonatology staff, is two floors directly above the NICU. So, we drove the same route we did every day for three months, parked in the same ramp, walked across the same walkway, took the same elevator… only our purpose and destination differed from the last time we took that trip, which was the Friday morning when we came in to find Will clinging to life.

The day before that, we had gone home happy because, after many hours of not peeing, Will was starting to go like crazy. It seemed to prove that things were working again and that, like every time before, he would face down a challenge and recover. When we returned that Friday morning after our first full night in our own bed that week, he had faced another long stretch where he didn’t pee. As the day wore on and he didn’t pee or respond to any number of other things, our hopes dimmed. The doctors, who had been upbeat about Will’s prognosis the day before, seemed defeated. They pulled out all of the stops, but told us they were really worried for him. Soon, Mary and I were calling our parents to say they should come if they wanted a chance to say goodbye to their grandson and we were trying to prepare ourselves mentally for losing him.

I’d long held out hope that Will’s autopsy would show something that would explain it all. What I was looking for, of course, couldn’t be explained by medicine, because the questions I have really are unanswerable. That said, we didn’t learn much from the report that we didn’t already know; nor, it seems, did the doctors. But it was helpful for them, because the report confirmed that the things they thought were wrong with Will actually were wrong, and that the treatments they were doing were the right ones. In that last week, however, he simply faced too much. Dr. Colaizy said it was her opinion that the chylothorax (the leak in his lymphatic duct that was filling the area around his lung with fluid) is ultimately the thing that proved to be too much. That had pretty well resolved itself by that last week, but the damage done by not having food for all of that time, including damage to his liver, was too great. In that last week he developed an infection that caused him too many problems, and as they stacked up, Will lost the upper hand. The report details what is called a multi-system failure; essentially, his body was shutting down. That Thursday rally was a strong little boy responding a bit to everything the doctors had to throw at him. By the time Friday rolled around, the infection had more damage to do, but he had nothing left.

In the end, what the report does is to reinforce what we already knew about Will – he was one tough little guy. The litany of problems in the report is staggering. Most of the things listed are problems that developed in those last few days as the infection took its toll, and don’t really accurately reflect his condition for the bulk of his time with us. But knowing the totality of what he faced those last couple of days, and the poking and prodding and constant attention that it required from the nurses and doctors, I’m amazed that he still was able to grab a finger when offered or just to look so peaceful when he obviously was hurting.

That last night, the doctoral fellow who was overseeing Will’s care was trying everything he could to get Will to respond. But as his blood pressure continued to drop and his lungs grew less and less responsive, it was clear that there was little left to do. After Will’s last x-ray, the fellow showed me the image and said, “Dad, it doesn’t look good.” He then said that there were things they could do to keep Will going until morning, but it would essentially be to give us a bit more time with him and to postpone the inevitable. We chose to let him go, and I’ve said here before that it was the hardest thing we’ve ever done. But seeing this report, I know it was the right choice. Will fought hard, and no one gave up on him – not us, not the nurse and doctors; no one. But when it was time, we did what we needed to do

We added this report to a stack of things related to his stay in the NICU that we may or may not ever look at again. It is an understandably clinical look at the end of our son’s life, and we’re not eager to revisit that. I’m glad we have it, these facts and figures that put his struggle into context. But that’s not what Will is to us. Will is in the photos we have of him or the e-mails sent by family and friends to share our joy or the countless memories we have of being with him or even this blog. He is that feeling of love and longing and pain and joy that we carry around with us every minute of every day.

Father's Day came and went much like any other Sunday, and I'm glad. What would seem to promise to be a rough day was actually pretty easy. I suppose that's because I've never been one much for big celebration of any holiday. As Mary can attest, if my birthday passes with little more than a card and maybe a pizza, I'm pretty happy (save for my last birthday, of course, where I got the best present I could ever imagine). Will is such a big part of my life that it doesn't take a special day to make me think about him, or miss him. As Mary has written much more eloquently here, it is strange being a parent without a child; to have that child taken away before you really even had a chance to be a parent. There is a term for a child without a parent, of course, but is there an term opposite from orphan to describe a parent who no longer has a child? Not that I'm aware of, and I think that it's probably because no one word can convey all that it should.

So, while I certainly didn't get the chance to do it for very long, I really enjoyed being a Dad. When I called my own Dad yesterday to wish him a Happy Father's Day, he reminded me that I had been a good Dad for Will. I hope so. The situation made it difficult, but as much as I could, I tried my best to parent the heck out of my little guy.

Do you have children?

How to answer this standard "get to know you" question among casual acquaintances when the two choices are to make the innocent questioner extremely uncomfortable or to deny Will? I guess I'm fortunate to have had four and a half months to prepare for that question. It didn't make it easier, but I think maybe I was able to find a balance by simply answering "Not living." It's direct and honest and doesn't really invite further conversation on the topic. But I felt like I was outside myself hearing the words come out of my mouth and not really believing that I was the one speaking.

Tonight was another case of "I wouldn't be doing this if Will had lived." John is at a conference for business editors and my office is hosting the annual meeting of news directors and writers from all the Big Ten schools. We could not be in both places at once if Will were here needing our care. Maybe that's why it hit me so hard when one of our conference guests mentioned that two of his staff who otherwise would have attended had decided to stay home because they are "new mothers." I'm a new mother too, but once again, passing invisibly among the crowd.

We have noted here the overwhelming abundance of pregnancy-related plot tangents in movies, but I've found that prematurity also pops onto my radar more frequently these days. Was it always there and I'm just now more conditioned to notice?

The latest example is an insert that seems to be in every magazine I've read in the past couple of weeks (as a still wet-behind-the-ears business editor, I read a lot of business magazines so I can at least sound like I know what I'm talking about). The insert is from Philips, touting its "Simplicity Advisory Board." Philips makes electronics of various sorts, and, thanks to this insert, I'm reminded that they make medical equipment as well, including neonatal monitors, designed with simplicity in mind, I guess. There on a full page is a big photo of a tiny hand reaching up to grab a mother's finger; below it is the tag line: "What if the hardest day of your life was the first?" Next to it is a picture of a monitor similar to the one we stared at for hours on end in Will's room, alternately cheering good numbers and worrying over bad ones.

Never mind the fact that Will's very own Philips monitor frequently acted up -- not in a way that ever compromised his care, but it certainly vexed his nurses who had trouble with it -- it is amazing to me that this was seen as a valuable way to market the company. Is this directed at people who might have a premature baby, people who should call the NICU and make sure they have Philips brand monitors, as if there is any planning or choice in any of this? Or are they simply letting you know that their products are so reliable that even this most delicate of tasks is entrusted to them? I do find myself shaking my head at the real "simplicity" here, as they talk about how "sometimes a mother's wedding ring can fit around (the baby's) wrist" or that the monitors are vital for "those first critical days." How quaint. Will could wear my wedding ring around his thigh when he was born, and you could replace "those first" in the latter statement with "all" to describe the days that were critical in Will's life.

It's just further proof that we might as well get used to reminders of Will's struggle in the most unlikely places. We have avoided films with obvious hot buttons, and haven't lined up for any baby showers lately, but overall we haven't exactly shielded ourselves from public contact. So, things like this are going to lurk out there, and at times they're going to hurt. I know I will be asked at some point if I have children and wonder about the proper response. I know I will see a toddler running around and wonder "what if?" and I know I'll probably be in a hospital again at some point, see a monitor and remember why I understand exactly what all of those numbers mean.