Honored

The March for Babies fundraising walks are going on this month and we are raising money in Lucas' name again this year.
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A few weeks ago I was honored to be asked to tell Lucas' story at the Montgomery County March of Dimes kickoff breakfast (with team fundraisers and corporate sponsors). Our team raised $6300 and was #2 in funds raised last year and we were awarded a nice plaque that proudly hangs in Lucas' room today. I decided rather than go to the meeting myself to deliver the message, that I would take Lucas. I was told later by a few people how much they appreciated seeing Lucas in person, that it brought everything into perspective for them. I thought I could get through his story easily, but I cracked shortly into it describing the night the doctors told us Lucas was going to die. It is still very emotional for me to recount, but I could not have been more proud as I talked about all he's overcome as I held up his tiny diaper that was only 1.5"x3" in size. That size diaper (PXS-preemie extra small) even swallowed him up, his entire torso fit into the diaper, they had to fold it in half on him. People just can't visualize how small a baby is that is born that early, and usually gasp when they see the diaper.

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We imminently believe that without the work of the March of Dimes, he would not be with us today. Last year, my friend flew here to walk with us and shared the footprints of her twin girls that were born more than 30 years ago... they looked exactly like Lucas' tiny footprints. They were born at a later gestation than Lucas, and weighed over 2 lbs, but neither survived. I later learned that in 1976, the March of Dimes was responsible for creation of the first Neonatal Intensive Care Unit, a year after her babies were born. Had they been born today, they would have survived and probably even escaped many of the disability risks being over 2 lbs. Seeing those footprints really brought things into perspective for me and the important work they do.

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Another thing happened that morning--a girl in the audience started crying as I spoke and after I was finished she walked out of the room. I felt awful, I knew that something I said hit something personal with her. I asked the coordinator about it and she shared with me that this mother had lost her child (born at 25 weeks) after living two months, just this year. My heart sank and I felt responsible for bringing her pain, as I stood up there boasting how Lucas had defied all the odds. At the completion of the meeting, she came back in... and thanked me. I told her how sorry I was, and she said "no, I came back in here to thank you for bringing your son and for showing me that it IS possible, and for re-affirming my reason for being here to raise money." I hugged her and was so moved, I cannot imagine having the strength to be there after losing a child. She is the one that re-affirmed my reason for being there.

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Others came up afterwards to thank us, and to say hello to Lucas. One woman told us her son was born at 25 weeks too and of the challenges he's overcome (now an adult), and shared with us how much the experience changed her entire family and how her two other children chose careers in community service and special needs as a result of being raised with their brother. Bran and I were very touched, as we know that wonderful things are transpiring in all of us as a result of this little guy. As I started this posting... I have never been more honored to be part of something.

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I'll end this long post with one more touching story from the same weekend. Bran and I went to our first Advisory Commitee meeting for Children's Hospital. There was a doctor and a few nurses that we had and I scanned the room for anyone else that looked familiar. I pointed out one woman to Bran that I thought had a baby in a bed across from us for awhile at Children's, but wasn't certain. We started off the meeting by making introductions telling a little about our experience at Children's (there are about 8 sets of parents on this year's commitee--some recently had children there spanning to several years ago... but all spent significant time in Children's NICU). The woman said she was transferred to Children's in March 2007, which matched our timeline, and then said her son "Riley." I immediately smiled and got excited to see her remembering exactly who she was... Baby Riley was his neighbor for a long time and was always dressed in really adorable colorful outfits and had tons of toys in and around his crib. His mom was there every single day while she had other children at home and I even wrote about her in an update on our website in 2007. She then finished her story... that Riley was there til Nov 2007, when he passed away. I went from being excited to my heart sinking, I can't even describe the awful feeling... to know this little boy, and to have exchanged many pleasantries with this woman and looks of compassion when our kids were in there together. I was expecting to cheer for a success story, not to hear that he didn't survive. He was born weighing 1 lb, 7 oz and never made it home. He was in the hospital for 11 months due to lung complications, and she wrote this in our directory...

"We arrived in March, and I was allowed to be his mom. Due to the lower age limit at Children’s, his brother Rory saw him for the first time. We learned to take care of him and not be afraid. Riley was feisty, mischievous, smart and so loving. He could give you fight and a smile all in one shift. The hardest day was being told he would never come home. They took my road map home down and said he had two to four months to live. Children’s counselors helped me tell his brothers Robert and Rory. The nurses pulled me through the hardest times and celebrated the great times. The doctors tried everything and never gave up on my son. November 3, 2007 Riley played with a balloon and thought it was funny. That night he passed away in my arms.

Riley is my sunshine. What I realized that night was how many people at Children’s loved and cared for my son. So we have come back to help in anyway possible and to honor our Riley’s memory."

This is a very sad story, and I don't want to bring anyone down, but I want to paint a picture of reality. We saw so much in our time in the NICU--both of heroic babies and ones that never made it. This is why I recognize and appreciate the miracle of our son's existence, and why we will always support the efforts of the March of Dimes, so babies like Riley get to go home. I hope you will consider donating this year, there is a March of Dimes link on the side of this blog.

Picture of our plaque awarded to Team Baby Lucas - Second Place 2008