August 11, 2011
My son was born almost seven weeks early. The evening before I went into labor, I went to see a show at Shea’s with my mom. I was super uncomfortable the whole time (which is so unusual for someone who’s pregnant) and could barely walk to the car afterwards. I promised my mom I would call my doctor the next day. Something felt wrong. Two hours later, my husband was driving me to the hospital because after some deliberation I had determined that I had not in fact wet the bed, but that my water broke.
The first time I saw my baby, apart from the split second I held him right after he was born, was in the NICU, under a heat lamp, with a breathing tube down his throat. My heart simultaneously filled with incomprehensible love and broke in two. I was devastated. I wanted him with me, in my room. Not alone, hooked up to machines. There was no price I wouldn’t pay; nothing I wouldn’t give to protect him and make sure he was healthy.
As my husband and I sat there with him that first day, I looked around the room at the other babies and began to count my blessings. Even though he was early, he was still a respectable 5 lbs. 9 oz. The baby next to our crib had been there a month and according to the sign above his crib, had just celebrated the milestone of weighing in at one pound. Another family had twins and had just lost one of them. After eight days in the NICU, we were able to take our son home (a true celebration, because the doctors were preparing us for at least a month), and since that time he has not had a single complication.
There are so many things beyond our control when it comes to our children. And it is maddening. I want to make a difference when I can. The summer after my son was born I heard the Hunter’s Hope Radiothon on WGR550. I was listening in the morning, deeply moved by the stories that families were sharing about their children. The story of Jim and Jill Kelly’s son Hunter and his battle with Krabbe Leukodystrophy is well-known in the Buffalo area. They started Hunter’s Hope to honor Hunter and to push for universal newborn screening. Early detection is crucial and is within our control. It makes so much sense, and yet, is so often not done. Jill Kelly has written a very moving book, Without a Word, about Hunter’s life and how blessed they are to be his parents. It’s a beautiful, heartbreaking story of love, faith and never giving up.
During the radiothon, one of the on-air hosts, Howard Simon, asked a question that truly hit home for me: “How much would you pay to save your child?” I had to pull the car over because I couldn’t see through my tears. I was immediately taken back to the first time I saw my baby, breathing through a tube; the first time I fed him was through a tube up his nose. And we were lucky. Of course there was no amount of money I wouldn’t pay. I called and easily pledged the $12 a month.
The radiothon is coming up again on Thursday, August 11 and Friday, August 12. I hope that you can all look within your hearts and realize that such a simple pledge can change lives. Hunter’s Hope advocates for universal newborn screening in an effort to detect life threatening diseases while it’s still early enough to make a difference. This is something within our control. This year, in addition to continuing our monetary pledge, I’ll be taking pledges over the phone at the radiothon. It would be an honor to speak with all of you. Please consider pledging and making a difference. No family should have to go through the pain that these families go through. My son is healthy. Hopefully, your children, or future children, are healthy. It is not a given, however. I hope you will consider supporting them in any way you can.