Carepages goes dark tomorrow and I am going to miss it. What is Carepages? It was a health blog that you signed up for to notify your loved ones about your health journey. We have used it as a lifeline for the past ten years. When Wendy was super sick, we wrote every day, sometimes twice a day, to keep our loved ones up to date. As she got stronger and better, we reduced our notifications. Recently we only used it to mark big milestones.
The thing I loved about Carepages is that it made you really sit down and take stock of the medical day. In any given day of craziness, it was good to really evaluate what was good, what was bad, and what were the hopes for the next day. And it buoyed our spirits to get messages from our family and friends telling us that they were thinking about us, praying for us, praying for Wendy. Hospitals can feel isolating, and it was nice to know that people were supporting us from afar.
Today I spent much of the day copying and pasting all of the updates, over 200 of them, over the course of our 10 year medical journey. I have to be honest, I wept reading a lot of the updates. Wendy was so young and sick, and I knew, reading the updates, that things were going to get worse before they were going to get better. I was so young too, and angry at our situation, the unfairness of it all. In 2007 and 2008 Wendy spent every holiday in the hospital, some 180 days. I left my job, and Michael took an extended leave. I slept less than three feet from my parents in a hotel room for months, and it became clear that we needed to move into an apartment. We had two blissful hours with Wendy in the apartment at Christmas, so she could open up her presents, before we had to bring her back to the hospital.
I marked the day that Wendy’s kidneys started working again, the first time we made it home, the day she coded in the PICU, the day she was put on the transplant list. I read the day of her transplant, and the first anniversary, the second anniversary, the fifth anniversary.
As I read, I also read messages from loved ones who hadn’t gotten married yet, or hadn’t had their babies yet. Friends who hadn’t gotten divorced yet. Stalwart friends who were battling their own illnesses and have since passed away. I am so grateful for those messages, to be able to read them, to be able to keep them.
At some point, Michael and I had decided to make Wendy’s Carepage public, so that other people could take comfort in her story, as I had taken comfort in the stories of others over the years, especially when we were looking for stories of kidney transplants. We had people follow us from all over the world, and they wrote messages of support as well.
I’m going to miss Carepages, it was a part of our life for a long time. Now in the age of facebook and WordPress, it seems almost quaint to have a blog site dedicated just to an illness journey. Perhaps that’s why it’s going away. But it marked our lives. It marked Wendy’s life, her health, her strength.
Today, Carepages showed me how far we’ve come. A new town, a new home, a new baby (now eight years old), and new friendships along with the strengthening of old friendships. So thank you, Carepages, for everything, for the good, the bad, and the ugly.
Thank you for the hope. Thank you for the journey.