Notes Left Behind by Brooke and Keith Desserich
|November 6, 2010||Posted by Christine Gordon Manley under Biography, Health, Non-fiction|
This is most likely going to be the hardest review I have ever written and may ever write. Usually when I review a book, I talk about believability of plot and writing style. For nonfiction, where plot has to be believed, I talk about engagement of characters to the reader and, again, writing style.
Notes Left Behind cannot be classified, nor do I have any right to critique it in any way.
Let me tell you a story. It’s about a girl named Elena Desserich. Shortly before her sixth birthday, she is diagnosed with a complex and (most often) incurable cancer. She begins a series of intensive radiation, chemotherapy, and drug treatments. Her physical appearance changes: she begins to lose control of various limbs and her beautiful face swells. Eventually, she has to use a wheelchair.
But she still insists on wearing a pink princess dress to a friend’s wedding, for which she is a flower girl, and in which the wedding party is wearing green.
She has one of her pieces of art hung in a local museum and she has her home town name a day after her.
She chooses a stuffed snake as a comfort toy.
She prefers vanilla ice cream over chocolate and her best friend is her little sister, Gracie.
She is six-years-old and forced into a world that is harsh on many more mature than her; yet, she embraces her life with grace and humility that made me weep.
Elena Desserich is not a fictional story. She is the daughter of Brooke and Keith Desserich (the authors) and she died nine months after first being diagnosed.
This is a story of love. Of hope. Of resilience. And, because the reader sadly knows how this story will end, of remembrance.
When the Desserich’s learn that Elena has cancer, her parents set out to chronicle the journey in a journal. What started out as a way to preserve memories for their youngest daughter, Gracie, so that she may learn more about the older sister that was taken away from her, resulted in an inspirational story for millions around the world. The Desserich’s bravely open their world up to us, letting the reader in on a world that many shy away from (That won’t happen to us!), and while stories like Elena’s are so hard to read (especially if you are a parent), they are so important.
When I told people I was reading this book, I heard over again, I couldn’t read that. Here’s the thing: I had to. My two-year-old beautiful baby girl is so far healthy, and that, my friends, is a gift. The Desserichs aren’t any different from any other family; their world turned upside down because of something out of their control. Elena deserves to be known, and I, for one, am glad I was allowed to partake in her world, if only briefly. Her life, while short, was a gift too, and she has a lot to teach others. Not reading her story means not knowing her, and I wanted to know her.
This is not an easy read; of course not. There were days when I only managed a few pages before I had to put it down. I couldn’t read it when my daughter was in the room. I didn’t want to read it if I was distracted by outside noise. I felt I owed it to Elena and to myself to give this little girl all of my attention. And of course, the nature of the book caused additional grief, since the reader knows the outcome ahead of time (before even the parents since they wrote in-the-moment). Expressions of hope pulled at my heart knowing what was to come, but really, what else could they do but hope?
And, of course, unlike most books, I dreaded the ending. The end wasn’t as finite as one might think though: Elena, being the wise and loving girl she was, hid notes of love addressed to her parents and sister throughout the house. The Desserich’s still aren’t sure if they’ve found them all.
A portion of the authors’ proceeds will go to The Cure Starts Now Foundation, a foundation started by the Desserich’s and dedicated to learning more and hopefully finding a cure for brainstem glioma, the specific form of cancer Elena had. I checked out their website and forced myself to look at each and every child’s face who is either currently battling this horrible disease or, like Elena, have died from it.
Life isn’t fair, and there is no explanation as to why at the moment I am blessed with a healthy child when so many are not. What I can do is acknowledge others’ pain and never take what I have for granted. Elena helped remind me of that. I thank her and I thank her parents for reminding me what is important.
I urge everyone to read Notes Left Behind and learn about one of the sweetest and bravest girls I have never met, but whom I was able to get to know . . . for a short while.