When I first started writing this, it was about dealing with disappointment and moving through it. Today, I had to erase what I originally wrote because of a tragedy in the life of Karen, one of my dearest friends.
This morning her five year old grandson, Matthew, died from complications of a bone marrow transplant. His little brother, Andrew, died from the same thing last August.
Both children had a genetically transmitted blood disease, very rare–only a few children in the world (as far as I know under twenty) had manifested this particular strain. They were being treated by specialists in Cincinnati who did everything humanly possible to save their lives. Sadly, that didn’t happen.
I had the honor of getting to know Matthew when he spent time with his grandmother here in Dallas. He was the liveliest, brightest, most active little boy I had been around in years. He had millions of questions, almost never stopped moving–was full of life. To know what he went through after the bone marrow transplant, which reduced him to an invalid, seems like more than a tragedy. But what was to be done? He had a disease and treatment seemed to be the only option.
I know his darling parents will take each day at a time and try to find some sanity over the next few months after spending the better part of the last three years in hospitals trying to save their children. What they did, and how strong they are, and what it took for them to keep getting up and taking care of those little boys each day was truly monumental.
Just knowing people like that feels sacred. I last saw Justin, Matthew’s dad, at a party for his mom’s birthday. He flew into town for the day, and was warm and friendly and strong, while his wife was back home in the hospital with their son. I marveled then at his courage and ability to keep going.
So this is really about strength and human potential. We all have it. Angeles Arrien, author of one of my favorite books, The Four-Fold Way, has an anonymous quote in that book which says, “People are like tea bags. You don’t know how strong they are until you put them in hot water.”
Justin and Kristin just spent the last few years in the hottest water imaginable and they are strong. My friend Karen, their mother, is strong. The whole family has grown and struggled together to face this. As friends, all we can really do is stand beside them, let them know we love them, and be available to help in any way we can.
Their pain will subside at some point. They will find a way to move forward, as human beings do. Sharing this story is one way I can think of to honor them and their courage. I will never forget Matthew. I have a moment with him etched into my heart:
A few of us stopped by to spend time with Karen and Matthew, who at that point was not visibly ill at all, and I had a chance to sit with him on the sofa and look at an information sheet about Tonka Trucks. He knew the name of almost every one, and we spent a lot of time talking about them and which ones were his favorites. My own beloved grandson, Ethan, wasn’t even conceived at that point, so I took that moment to fully enjoy a grandmother experience, not knowing if I would ever have one of my own. I just kept marveling at his smiling face, his big blue eyes, his boundless energy and his insatiable quest to learn. He was a walking, talking angel.
That is the way I will always remember him, and I have no doubt that he lives on in whatever way life continues after this earth experience and that he and his little brother Andrew would want us to think of them and feel the love of life they both expressed while they lived their short times here with us. For that I thank them, and thank Karen, Justin and Kristin for sharing their lives and their struggle with the rest of us who have grown and learned from being on the sidelines of this incredible journey they have taken. The sadness is real, but so is the love.