January 4, 2012
Be Not Afraid
Tom and I decided to have a destination wedding and I was getting a little bit stressed out with the planning, so I decided to take a day off from work to get organized. It was early in the morning and I called my friend, who was helping me to address the wedding invitations. She was at work, so I was very surprised and confused when her first words were, “Turn on the TV.” I turned it on just as the second plane was hitting the Twin Towers. The whole world changed that day, as you know. When things settled down and I could think about my wedding again (suddenly so meaningless in the grand scheme of life) I wondered how we could possibly ask our guests to travel out of the country after what had just happened. The wedding wasn’t going to be until the summer, but I just wanted to change all of the plans and get married at home. My friend asked me how I would feel if the original wedding date came and nothing else had happened. If we could have had the wedding as planned but didn’t because I had changed my mind out of fear. After much discussion and soul searching, Tom and I decided to have the wedding as originally planned. Everyone travelled there and back safely and it all worked out. It was lovely.
Part of our life with the boy is living in fear. Although he is quite stable at the moment, things with him can change so fast. Maybe I know too much. Maybe it’s the affect of having friends who have lost their children to kidney disease. Or maybe it’s knowing friends whose children are getting sicker and sicker as they wait for another transplant after the first has failed. You see, people think that when you need another kidney transplant, you just get one. But it doesn’t work that way. It is often very hard to find a match for subsequent transplants and there are often a lot of other complications standing in the way. (Check out my friend Zachary’s fight: http://help-zachary.com/).
Every day, I live in fear that Matthew will die. Every day I kiss him at least once for Aidan and think of the shell my life would become if I were to lose him. Yet every day, he grows and develops and is so full of joy and happiness. I have other friends whose children are several years post transplant and going strong. I try so hard to think of them as much or more – especially of Bryan, who is now 19 years old and has had his mama’s kidney for 14 years and is doing great. Then things happen like Matthew’s recent pneumonia diagnosis. His only symptom was a high fever – which came and went so fast, we barely noticed it. Never in a million years did I think he had pneumonia! It got me thinking, “I worry about so much, all the time, but it’s always something that I wouldn’t expect that happens.” What good is this fear doing me, anyway?
The other day, Tom and I were talking about how we just cannot believe that Matthew is about to turn 3. Certainly no longer a baby, it seems even his toddler days are numbered. I got him a potty to start potty training; I’m considering when to move him to a “big boy” bed; and I’ve recently had to shift my thinking to start to plan for pre-school. We were talking again today about how our children are just growing up so fast and Tom said that they are growing, but we are stuck. He said that we are stuck in the survival mode that we were forced to enter to deal with the critical time surrounding my pregnancy, Matthew’s time in the NICU, and while he was on dialysis waiting for transplant. We haven’t been able to shift our minds out of that phase and into the “good times” phase. Matthew’s milestones sneak up on us sometimes. He no longer needs to be pumped full of fluids while he sleeps at night. He is eating a larger variety of foods and even starting to experiment with new textures. He is communicating more clearly and effectively every day. We know full well that there is no guarantee of how long the “good times” will last. But when we were talking the other day, I had the same realization that I had so many years ago about our wedding. What happens when Matthew turns 25 and he has had a happy, healthy life, and still has his dad’s awesome kidney, and I realize that I have spent the last 25 years living in fear?
I could live for today and not let myself think about anything negative happening to him (impossible) or I could live gripped by fear and cry every day over the what-ifs (dangerously possible if I let myself). Neither would alter the course of the life that God has planned for Matthew. It will only change the value of the time I get to spend with him. If you have been reading this blog for a while, this theme is familiar to you. It is not the first time that I have resolved to stop being afraid. Maybe only if you are also a kidney parent will you realize what a daunting resolution it is. But I’m trying…
