Thursday, March 31, 2005

God always answers our prayers.
Sometimes, the answer is No.

I read this today and it instantly made me teary. Questions of faith are never easy, and our situation definitely has more questions than answers. My mom says it had better be a slow day when she gets to heaven because she will need a long time with God to get answers to all of her questions. I wish I had that confidence that the answers are out there and the patience to wait for them to be revealed.

I do find some comfort in faith, security in the belief that all is not random, that there is a plan and a loving God to guide us. But that's not always solid enough to cling to and it leaves me feeling adrift. I used to find solace in the rituals of mass, that sameness week after week no matter where I lived or what else was happening in my life or in the world. These days it's not solace I find but an empty ache. I thought at first it was the somber Lenten services, so I stayed away for a few weeks thinking I might find joy again in Easter. But it was the same. There's nothing about mass that I associate with Will--he obviously never was there and I didn't even go very often during his life--so I don't know what exactly makes me sad there. Maybe it's just the absence of that "old" happiness, the memory of my joyful weekly prayer while I was pregnant: "Thank you for another week with this baby. Watch over and protect us. Help my baby grow and keep me strong. And please also care for all pregnant women, especially Diana and Melanie and Kathryn and Kerry and Liza..."

I don't know what to pray for now. Or maybe I'm just scared that the answer will be No.

Sunday, March 20, 2005

For those interested in the Iowa City March of Dimes walk, Saturday, April 30, there is now a web page you can use to register for the University of Iowa Collegiate Council team, walking in Will's memory. Click on "Register to Walk" and you'll be prompted with instructions for the rest of the registration process.

My sister Ann also has web registration for Team Kenyon in the Chicago March of Dimes walk, Sunday, April 24. Click on "Register to Walk" and you'll be asked to specify whether you are walking with a team or as an individual. If you click the team button, the next page will ask for the team name. Enter "walk for will" and you'll get two results. You want "walk for will" not "william" so click that and you'll be taken to the registration page.

It's a lot more self explanatory when you're actually on the page.

Thanks to all our friends and family members who have already committed to joining us. We appreciate everyone's support.

Saturday, March 19, 2005

Will's cousin Sean was born this morning in Phoenix. It's very confusing for such a miraculous, joyful event to also bring such saddness. We'll watch Sean grow up and know that Will should be running along side him. With time I know it won't feel so raw, but I wonder if I'll ever stop thinking, "What if..."

Monday, March 14, 2005

This blog started out as a way for us to keep family and friends updated on Will's life, but it quickly took on a life of its own as Will's story captured the hearts of so many people. We were all basically helpless to do anything for Will, but we have several opportunities this spring to help other babies and families who struggle with the effects of prematurity. We are planning to participate in two Iowa events organized to raise both awareness and money in the fight against prematurity and preeclampsia. We have felt the love and support of so many people throughout this experience and would love to have anyone who is interested join us in Iowa City for the March of Dimes Walk America on Saturday, April 30, and/or in Davenport for the first-annual Preeclampsia Foundation Walk-a-Thon on Saturday, May 7.

The University of Iowa Collegiate Council Team will walk in memory of Will in a six-mile hike through Iowa City as part of the nationwide annual event. If you're interested in joining us and the UI Collegiate Council, there will soon be a web page for registration. I'll post information here. Other walks are scheduled all over the country. If you can't make it to Iowa City, but are interested in supporting the cause, we encourage you to find out when and where your local walk will be held and sign up. My sister Ann is organizing a Will Kenyon family team for the walk in Chicago, Sunday, April 24. She invites anyone interested in that event to email her at for information.

A few weeks ago I linked to a story about a woman who died from HELLP Syndrome at University Hospitals the same week that Will died. Her family's mission now is to raise awareness, hoping to prevent even one family from suffering the heartache that the loss of their daughter/mother/wife has brought them. As part of that effort they are participating in the first ever walk-a-thon sponsored by the Preeclampsia Foundation, which will be held in a number of cities around the country on May 7, the day before Mother's Day. The Iowa walk (a 5K) will be held in Davenport and they are asking people to register by March 31 so they'll know how big an event they're actually planning, but they will also accept registrations up to the day of the walk. I have the registration materials and will email them to anyone who is interested in joining us for this walk.

We weren't sure at first that we'd feel up to events like this so soon, but it feels like the right thing to do--a way to move forward carrying Will in our hearts.

Wednesday, March 09, 2005

"How are you?" How many times a day do we ask and answer that question without even thinking about it? The answer of course is always, "Fine, and you?" It's still my first instinct when I hear the question, but if those words come out of my mouth I'm instantly struck by what a lie they are. I am not fine. And the contexts in which that question is most often asked are the ones in which I'm least prepared to think about how "not fine" I am. It's no one's fault. I do truly appreciate people expressing concern, checking in on me. It would be so much worse to be trapped in a zone of silence with everyone afraid to say anything for fear it might be the wrong thing.

But for some reason, those three words in that order send me on a downward spiral of despair more often than not. I've been thinking about this for a couple of weeks now, not wanting to share it until I came up with an alternative. But it's not really the question itself. A million different things trigger those thoughts and not always the same day-to-day. It's the first green shoots that will be daffodils and tulips popping up outside my door. It's a woman pushing a stroller. It's a meeting I wasn't supposed to attend because I was supposed to be on maternity leave. It's the simple act of washing my hands, a NICU constant. This is today. Tomorrow may bring something else and these won't be a trigger.

Maybe I need to adjust my own perception of "fine." Maybe it doesn't mean what it used to. The truth is, most days just getting out of bed is a major victory, so I suppose if I'm out encountering friends who ask how I'm doing, then on some level I am "fine." Not like I was before or during Will's life, but in a way that means I'm incorporating this whole experience into a new me who may never be "fine" the same way again.
I never thought I'd read about pleural effusion in the news; then again, there was a time when I would not have even noticed that term. But now that President Clinton suffers from it, it's big news. Yes, it's pretty much the same thing that Will suffered, but the similarities end there. While Mr. Clinton will have surgery to take care of some scarring caused by his heart bypass surgery and deal with a chest tube to drain any lingering fluid in his chest cavity, it is routine enough that he's able to golf the day before surgery and doesn't seem to anticipate much of a setback.

Will, on the other hand, ultimately died because of his pleural effusion. He was kept off of food for so long that his systems began shutting down. The tiniest nick in his lymphatic duct during his own heart surgery led to weeks of fluid accumulation, and weeks of being fed nothing. His liver started to fail as a result and that was more than he could bear. I won't go so far as to say that if there had been no pleural effusion for Will that he'd still be with us. Any number of other things could have gone wrong for him -- or could have been working in tandem with the effusion to cause his problems. And yet, for the President, "It's no big deal."

I certainly don't begrudge him for the fact that he'll likely recover just fine from this and continue with an active life of service, but it just strikes me as patently unfair that a little guy like Will could succumb to such a problem while for others it is an inconvenience. That's the case for premature babies, even. Most, as I reported often here, see such effusions disappear on their own after a few days or more. Not Will. He always seemed to want to do things the hard way, as if he had a choice.

Tuesday, March 08, 2005

No profound words of wisdom or great revelations here. It just seems like Will is everywhere today. I found photos of him on the hard drive of my computer at work that I didn't know were there. I needed the computer cable that I had kept in his room for months so I could do work from there on my laptop. Eric Zorn with the Chicago Tribune wrote to say that someone had sent him a card to forward to us. Even the imminent arrival of spring signaled by the clear blue sky outside reminds me that I had been hopeful that we'd be able to bring Will home in a few more weeks. And it's not just today. He's there with me (and with Mary, I know) every day. It is so bittersweet. I'm so glad to have had him in my life for that short time, knowing that it has made my life richer in ways both obvious and unknowable. But I miss him so much, and it hurts every time I think of a future without him.