Sunday, October 09, 2005

This weekend I cleaned up my garden, harvesting the last of the tomatoes and then pulling up the plants to bag for yard waste recycling. It's kind of a gross job because I'm not a meticulous gardener--I don't worry about trying to pick up tomatoes that fall to the ground before I have a chance to pick them from the vines. They don't smell very good after a few weeks down there, and when you pick them up they squish, soaking your work gloves. While I was working, I was thinking of last year when this disgusting chore fell to our amazing friends, who swooped in one Saturday with rakes and bags and cleaned up our whole yard while we sat with Will in the NICU.

Our friends and family did many amazing things for us last fall and winter, and we were continually overwhelmed by the outpouring of support and love. It was absolutely essential to our being able to continue riding that roller coaster every day. We knew we were not alone. That flood of love and support continued and even intensified when Will died. Cards, letters, phone calls, trips across states and across country. And donations. Oh, those donations to Will's memorial fund had us opening our mail daily with mouths agape at the generosity he inspired. Nearly 200 individuals, couples, families, and organizations contributed more than $12,000 in all, a sum we never envisioned on that horrible night. In all honesty, we just wanted to offer an alternative to flowers so that we wouldn't be surrounded by death as they wilted. Will's life had to be more than a road to death. You made our wish come true--that his death would not be an end, but a sign of hope and a chance for life for other babies and families.

In early September we sent the first $500 from the fund to the March of Dimes for its efforts to support premature babies and families in the aftermath of Hurricane Katrina. We plan a second $500 donation to the organization next month at a local fundraiser at which we will speak about Will's life, the tragedy of prematurity, and our hope for a future in which babies don't have to fight battles like Will's.

We directed $2,500 to the music therapy program and $3,000 to the Neonatal Intensive Care Unit, both at University of Iowa Hospitals and Clinics, Children's Hospital of Iowa. "This gift is presented through the generosity of those who loved Will Kenyon," we wrote in notes accompanying each donation. "We wish to honor his memory by providing comfort for other babies and support and educational opportunities for their parents." In music therapy, equipment replacement costs add up fast as the lullaby CDs and portable CD players in the babies' rooms wear out from repeated use. It is amazing how these soothing tones work their magic on such tiny ears and brains. Will's oxygen levels almost always held steady when we turned on his music or when the therapist came to sing to him. In the NICU, the soft blankets the babies are nestled in are not part of the budget, but are provided through donations and gifts like ours. The nurse manager also mentioned that they were hoping to purchase some equipment to allow parents to watch the required educational videos in the babies' rooms (with headphones, of course) so that they wouldn't have to spend precious moments away in some room with a VCR. We never watched those videos. When we were there we wanted only to be with Will. As needs arise, our gifts will be available and we know that this dedicated staff who loved Will as we did will honor his memory.

The final $6,000 in the fund went to the Mother's Milk Bank of Iowa, which provides donated breastmilk to NICU babies whose mothers are not able to provide it. This works in much the same way a blood bank does--with carefully screened donors, of which I was one. Breastmilk is the best form of nutrition for babies--so beneficial for the most fragile in the NICU, in fact, that it is considered medicine and is billed that way and paid for by insurance. Pumping breastmilk was absolutely essential to my continued optimism that Will WOULD come home and he would need me to be ready to feed him. When I ran out of freezer space at home and knew I had more than enough for Will's future needs, I began donating. There are fewer than a dozen milk banks in the United States according to the Human Milk Banking Association of North America. We are very lucky to have one here in Iowa, and it is expanding now beyond University Hospitals to serve NICUs in Cedar Rapids and in Davenport. This expansion means they'll need more milk, and when they get it they'll need more freezer space to store it before and after pasteurization. Our gift will provide new freezers.

We can never say enough how much it means to us to be able to honor Will's life in this way. None of this would have been possible without you, our family, friends, and in some cases, complete strangers, who have walked with us on this journey.

The other thing I did this weekend was to walk a 5K with two friends, one of whom pushed her seven-week-old daughter in a stroller. "Maybe we can do this again next year, and we'll all have strollers," she said. Something to look forward to.


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