Have you ever heard a story that just stays with you? Something that hits at your core, that makes you think about it, and re-think about it, and connect to it, and share it. Maybe you have stayed in the car a little longer in a driveway because you are listening to “Story Corps” on NPR. Maybe it’s something you’ve read on facebook. Sometimes, you don’t realize how much a person’s story means to you, in your own journey to understanding and recovery from a diagnosis or the diagnosis of your child.
This recently was brought to my attention when a woman asked to be my facebook friend. I was pretty sure I didn’t know her, had never met her, but there were a lot of people I had met at the American Transplant Games, and many of the mutual friends she and I had in facebook were those same people I had only recently met in Cleveland. So I decided to accept her friend request and see who she really was.
What I didn’t know is that I had been reading her blog posts for over seven years.
Her daughter, Lacey, had gone through two organ transplants, both a heart and a kidney. The heart transplant happened when Lacey was a baby, and after many years of immuno suppression (which isn’t great on the kidneys) her kidneys gave out too. Lacey’s brother donated his kidney to her. I had read all about it on their CarePage.
CarePages are a medical blog where you can update your loved ones about your condition. There are other ones like it, the most popular being CaringBridge. We had been blogging about Wendy’s illness from the first week that we were at Massachusetts General Hospital. It was helpful because it kept everyone updated without having to tell the same story over and over again. It also was therapeutic for me to take stock of the day in the evening and determine what had gone well and what hadn’t. In a hospital where certain events happens quickly between long periods of waiting, it was helpful to think through every day to process it all and write about it for our loved ones. It was also bolstering because our loved ones could write messages of support for us and for Wendy at the bottom of every post, carrying us through to the next day. There was an option to keep it private, to have people ask to join the group, and initially that’s what we did, kept it closed for only family and friends.
At the point where we were told that Wendy was going to need a kidney transplant, we had never met anyone who had gone through organ transplantation before, so I searched in Carepages and found Lacey Wood’s site. It’s called LuckyLacey, and it told not only all about her journey as a heart transplant patient, but also as a kidney transplant patient. It told all about her competitions in the American Transplant Games and the World Transplant Games. It talked about her college that has a special section for kids with transplants who are going through various stages of transplantation so that they can get the best care they need while still going to college. I learned so much from this site, that there was a warm, caring transplant community that connected each other to the best care and resources, that there was a celebration of life and living.
At a time when I was very scared, this blog especially gave me hope.
It also showed me what was possible for Wendy. We never would have known about the American Transplant Games, or the Transplant Winter Camp, or the Chronic Illness Initiative at DePaul University. We learned though Lacey’s journey and through the generosity of her words in her Carepages blog.
Her blog made me re-think our blog, WildWonderfulWendy. What if our blog about HUS and kidney transplantation helped someone else the way that LuckyLacey helped us? Michael and I talked about it and decided to make Wendy’s blog public.
And now, years later, I’ve started this blog. I outlined why I decided to write it in the first place in my first post, Brave Fragile Warriors. I realized that being the parent of a chronically ill kid can be incredibly isolating. You have so many feelings and not a lot of people who can relate to you.
We never know what impact we have on another’s life. We don’t know what our ripple effect is.
When Lacey’s mother contacted me to be my friend on facebook and I realized who she was, I sat down and wrote to her to let her know how much Lacey’s blog helped me through the fear and isolation of being the mom of a kidney transplant kid. Otherwise she never would have known her own ripple effect.
It’s so important to share these moments, so other parents know they are not alone. It’s equally important to share with others how much their stories touch our hearts, so that they may continue to write. We are many stories, but the Same feelings of helplessness, fear and love.
Thanks for reading my stories. Please share your own, in the comments below or with your own blog and then let me know so I can read them.
Forward together is better than forward alone.