Ron's Blog

One of my biggest challenges is trying not to get caught up in what I call Hangnail Experiences – those little annoyances that are not really that important but tend to consume us.  I experienced one of those today when I received criticism about something I did.  About an hour later, after feeling sorry for myself and questioning my self worth, I got the following note from someone who attended one of my presentations.  This is what it looks like to manage a difficult situation with grace and optimism.

On Valentine’s day my first child Grayson died.  He was only 7 days old when he got Necrotizing Enterocolitis (NEC).  We held him in our arms as he passed away.  My whole family was in the room.

Grayson was born 6 weeks early by emergency C-section and was only 2 lbs and 14 ounces, when he was born. I almost died from severe preeclampsia.  The first 5 days of his life he was fine. He breathed on his own, he was eating on his own, and he was regulating his own temperature. He was also extremely interactive and was gaining weight. The doctors said he was more advanced than most full term babies.

Unfortunately, on day 6, our little Grayson got NEC and the doctors at Children’s Hospital in Boston were not able to save him.

Now as you can imagine, we could have gone down a very dark road of “why us?” and “what if?” but we decided not to. Instead we decided to be grateful – grateful that we had an amazing son, grateful that we had him in our lives for 7 days, grateful that I had not died, grateful that we knew what caused Grayson’s death, and grateful that we got to hold him when he passed away.

I have a little thing that I say to myself every day, “I do not have the power to change the past but I do have the power to change the future, so change the future I will”.

In the last 11 weeks my husband and I have raised over $6,000 for Children’s Hospital Boston NEC research, we are forming a non-profit organization called “Team Grayson,” we have a “Team Grayson” Facebook page ,and we have purchased a website. Our goal is to raise awareness of NEC and to help fund research.

In Grayson’s short life, he has been able to touch thousands of people all over the world. In Europe there is going to be a fund-raising rally and one of the teams is “Team Grayson.”  They will give all the money raised to children’s research in Europe.

As I said, Grayson died on Valentine’s day. Some people would look at that as a horrible thing and that it will ruin future holiday. We are choosing to look at it in another way.  It was fitting that Grayson died on Valentine’s day because of all the love he was able to bring into this world in such a short time.

The quote you told us “It’s not about the days in your life but the life in your days” is one I will hold close to my heart for the rest of my life. It perfectly sums up my son Grayson and I want to thank you for that.

– Laurel Kapferer