We enjoy introducing the community throughout the year to various people who are in some way involved with raising awareness or focus about EB. One such person is author and mom Jessica Kenley. Jessica lost two of her children, Ethan Tyler and Kaylee Marie, to the Junctional-Herlitz subtype of Epidermolysis Bullosa during their infancy. She later gave birth to her third child, Lilliana Marie, in 2009, who has since shown no symptoms of EB.
In 2012, Jessica decided to share her own EB story by writing and publishing her book, KIDOWED.
Her account of her family’s experience with EB has been described as honest, stark and brave. Her decision to tell the story through a “no holds barred” approach has been met with mixed feedback because of its strong language. We reached out to her recently to get her thoughts on what her process was in sharing her story, what the experience has been like interacting with other EB families and others in the community and how she has handled receiving both positive and negative feedback from others in doing so.
In this first blog of the two-part interview, Kenley discusses her motivation behind writing the book and the responses to it.
Q. EB Resource (EBR): You detail in KIDOWED what it has been like as a parent to experience the devastation of the loss of two children to EB. For those of our readers who have not yet read the book, what compelled you to write your own book and share such a deeply personal experience with others?
A. Jessica Kenley (Jessica): First and foremost, I wanted more people to know about EB, because I was shocked that so few people had ever heard of it, especially that the doctors — even the pediatric dermatologists that I took my firstborn Ethan to — had virtually no experience with it, and those who had had never treated the subtype that my children had. This is a disease that has devastating effects, a high mortality rate, and is just plain horrible to be afflicted with, yet I had never heard of it, and the vast majority of the people that I talked to hadn’t either. It was shocking.
Secondly, I knew that there had to be more people out there like me — and by that I mean people who had gone through a terrible experience and were unable to find the good in it for a very long time, if at all. I was extremely angry for many years, and still am sometimes, about losing my first two children in such a horrific way while I stood by seemingly helpless. I was not and am not religious, and was not comforted at all by the fact that people told me that they were “in a better place” or “went to be with God.” All I knew was that they were supposed to be here on Earth with me, and it just seemed incredibly unfair, especially with the odds that I faced of even having a child with EB, that they first of all had the only known universally fatal subtype, and secondly that they both were afflicted with it with only a 25% chance of the genes matching up that way with each pregnancy. I was just furious, and I knew I couldn’t be the only one, considering that anger is one of the documented phases of grief.
Q. EBR: When you told others of your plan to write the book, what kind of response did you get about doing it?
A. Jessica: Overall, I got a fairly good response. People in my family and friend circle thought that it was a decent idea, although I did have several people proofread it, and one woman who is a therapist said that she couldn’t put it down, but at the same time wanted to “throw it across the room.” I knew that the book would not be easy emotionally for anyone to read, but I still felt like it was very important to publish it. A couple people recommended that instead of publishing it, I should instead start a blog to see how that went, but that didn’t make a lot of sense to me, because I figured I could reach more people if I published it, and I also didn’t have an endless amount of things to write about after Kaylee died. I didn’t want the book to be mostly about me, I wanted it to be mostly about the children and my experience as a single mother to two children with EB, and not so much about my experience after they died, because I am certainly not an expert on grief or on how to successfully continue with one’s life after their children have died.
Q. EBR: When you set out to write the book, what objectives did you have in mind to get the story out there?
A. Jessica: To be quite honest, my only objective was to try to spread awareness about Epidermolysis Bullosa, and since I am not a medical professional, I couldn’t really write a whole lot about the science or medicine behind it and expect people to take me seriously, so I wrote about what I knew, which was my feelings and experiences I had while I was the mother of two children with EB. The book is simply my journal, and I started writing it as if I was talking to another person just because I was trying to justify the crazy thoughts in my head to myself at the time, if that makes any sense. I didn’t know when I started writing it if I ever would actually publish it, but I knew that if I did, it would have to be very honest, because I think that is the best way to reach out to and relate to other people.
Q. EBR: You are quite candid in the book both with your honesty about the conversations and interactions you describe but also in the language that you use throughout the book. Why was that important to you in the telling of the story?
A. Jessica: It was important to me to convey what I was actually feeling and thinking at the time, even if it was irrationally angry or sort of emotionally over the top, and even if that meant using a lot of curse words, italics/bold/capital letters. I think it’s difficult to express very strong emotions and tone in the written word sometimes, and I wanted people who were reading it to feel like this is how it would sound if it were actually coming out of my mouth if we were having a conversation. I didn’t have a good “sounding board” at the time I was writing the book, someone I could say anything to, so I guess that what I wrote is how I would have been speaking if I were talking to my best friend. I also didn’t want the book to be “sugar-coated” at all or censored in any way, because I felt at the time like this would have made it less “real” and people wouldn’t relate to it as well. The bottom line is that most people have had thoughts like the ones I wrote down, even if they don’t say them out loud, and I didn’t feel like a diary should necessarily be required to be polite.
Q. EBR: So what kind of feedback have you received from others so far?
A. Jessica: The majority of the feedback about the book has been good, especially from people who went through a similar experience as me. I do, however have a few 1-star and 2-star reviews on Amazon.com, and several people in my family and in my town who were portrayed in an unflattering light were extremely angry with me. Some felt as if their privacy had been violated, and others were embarrassed about what I wrote about them. The people who don’t know me and criticized the book did so by attacking my personal life choices, such as choosing to have two more children after my son died. I have apologized extensively to the people who were hurt unintentionally and contacted me about it, both publicly and personally. My intentions for this book were certainly not to sling mud, but to convey my feelings about a horrible situation that I was trying to survive with admittedly poor coping skills. The rest of the people who contacted me and had positive feedback have been many, and I try to focus on that.
Because of the book, I am friends with an entire new group of people related to the EB community that I would have never known had I not published it, and for that I am extremely grateful. Many people have moved me to tears with their heartfelt messages about how they could identify with my feelings of anger and helplessness, and several have told me that they were so glad that I published it because they felt like they were the only ones who felt similar to the way I did after a loved one died, as if they were abnormal and it was socially unacceptable for them to express those feelings, because the push in our culture really is for people to “move on” and “find the good” in the situation.
Q. EBR: In the book, you talk about the expectations people had of you as a parent and the various ways they responded to you and your children. What can you share with our readers about that aspect of dealing with EB, something that really stood out from your experience that perhaps parents of newly diagnosed children could learn from?
A. Jessica: It was very apparent with me right from the get-go that I would have to develop a pretty thick skin about my decisions involving Ethan and Kaylee’s care, especially some of the controversial medical decisions I was making, such as narcotics at an early age and resisting invasive treatments like g-tubes, dilations and even blood transfusions. So few people have ever heard of EB, including the medical community, that parents of newborns with EB are required to become instant experts in order to care for their children well. My advice for parents of newly diagnosed children would be this: TRUST YOURSELF! No matter what everyone else’s advice is, and whether it is asked for or not, you will receive a whole lot of it, but you will know what works and what doesn’t for your child, and what is best for them.
Also, I definitely did not do this, but I would recommend coming up with some “canned responses” to the very insensitive and offensive questions that people ask, because it certainly didn’t do me any good to be nasty about it. These would include things like when people say, “Oh, so he/she just has sensitive skin, right?” and then launch into a story about how they had to buy special laundry detergent or something for their child in an effort to relate to your situation. I found that if I tried to explain the mechanics of the disease to these sorts of people, their eyes would glaze over and they wouldn’t pay attention anyway. It just seemed that they wanted to talk about themselves, which irritated me to no end. The bottom line is that there are only so many people that are willing to be educated, and the rest are really not worth your anger or frustration, because it certainly won’t do you or your child any good.
Next week, we will feature part two of the Q&A with Jessica when she talks further about other outcomes from writing the book and needs within in the EB community.