I warn you that this is a heartbreaking story that speaks to every parent's worst nightmares. And yet it's also an inspirational account of how one family lived their nightmare and came out the other side.
When Keith and Brooke Desserich learned that their six-year-old daughter Elena had brain cancer, the prediction was she had only 135 days to live. The couple decided to record every last day with their daughter (and in the end they had 256) as a tribute to her, but also so that their younger child, Gracie, would have lasting memories of her sister.
Their book, Notes Left Behind, was first published by the family at a small press and sold as a fund-raiser. It's now been launched globally by publishing giant Harper Collins, and comes out this week in the UK. Profits from its sale are going to The Cure Starts Now, a foundation to fund paediatric brain cancer research.
The book is named after the secret letters Elena left scattered throughout the Desserichs' Ohio home.
Even after their daughter died, her parents continued to find the notes, pictures and poems their daughter had hidden around her home telling her family how much she loved them.
Keith Desserich told ParentDish US:
"When anyone goes through that, you kind of pick up on the smaller moments. That's really what the point of the book was. We wanted to be able to pass on memories, pass on reflections, pass on not only the struggle that Elena had to her younger sister, but we also wanted to pass on some of the funny things, the things that, frankly, we would want her to remember about her sister."
Keith said that the family hadn't intended to publish their story, but the demand for it grew online:
"We put it up online not for the benefit of everybody else reading it, but because we had to make an hour of phone calls to our extended family every single night. In an attempt to alleviate that, my sister suggested we put the contents of this journal up online so our family could read it. The simple concept was put it up at Desserich.org because no one could spell our name in the first place, so the quickest way to make sure only family could read it was to put it up on a Web site that was our family's name. Obviously that strategy didn't work too well. We had a lot of people reading it and never really realized it until it crashed our computers twice."
The family has found that there have been two main reactions to the book:
"One is that they really learned to spend time with their children and really cherish their children and see life through a different perspective and appreciate life for what it was. The second thing we've heard from people is it taught them the power of smaller moments.
"You look back on life and believe you're going to remember the day you got married, the day your son or daughter was born, and those seem like milestones when they happen, and I think they always will be. But I think we also remember even more powerfully the smaller moments in life.
"I look back on it and I can't tell you necessarily how Elena felt in my arms, either of the girls, but I can tell you the feeling of Lucky Charms on my cheek when they would give me cereal kisses ... I guess in the end your life isn't made so much in milestones as it is in minutes."
Notes Left Behind by Keith and Brooke Desserich is out now and available here from Amazon
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