Tuesday, November 10, 2009

If you're a parent.. (and even if you aren't)

...you simply MUST read Notes Left Behind by Brooke and Keith Desserich. Even if you're not the kind of person who likes to read.

So often we're all in a hurry. Have to clean the house, have to pay the bills, have to get to work early and stay late, have to run the errands. We get so caught up in the things we feel we have to do that we forget to do the things that matter the most in the end. We tell ourselves we'll play a game with the kids tomorrow. We'll kick back with our spouses over the weekend. We'll visit relatives soon. Only tomorrow, the weekend and soon come and we find some new chore or errand that needs to be done. Weeks and months pass and we've done none, or very few, of the things we should be doing every single day or at least with regular frequency.

Notes Left Behind chronicles the journey and struggle of six year old Elena Desserich, the daughter of Brooke and Keith, as she fights for her life against a rare form of brain cancer. DIPG (Diffuse intrinsic pontine glioma). "Less than 10% of children diagnosed with DIPG will live longer than eighteen months from diagnosis. Survival is even more rare." (http://www.thecurestartsnow.org/page.php?id=2)

Elena was just five years old when she received this devastating diagnosis. She turned six shortly thereafter. She was given 135 days to live. She made it 256 days.

The book is written in the form of a journal as it was originally intended to be a personal memoir for Elena's little sister Gracie. As I read the book I found myself smiling as often as I found myself crying. Elena's story is heartwrenching and yet heartwarming at the same. This beautiful six year old little girl, who suffered horribly for nine months, still managed to find happiness and joy in life.

Elena's story is a reminder that we all need to slow down and spend quality time with the people that matter the most. Particularly our children. Life IS too short and everything can change in an instant. Take pleasure in the small things. In the end it doesn't matter how much money we had or how much stuff we managed to acquire in our lifetime. What matters is that we cherished every moment with those we love.

One of the most poignant (and gut wrenching) moments in the book comes when Keith describes how he and Brooke laid in bed with their daughter as she left this world.

"Brooke and I lay by her side in bed until early this morning, when she finally relented and left us......

.....I carried Elena in my arms to the awaiting ambulance. She is still my daughter and I know she would appreciate being carried in my arms rather than being placed on a stretcher." 1

It was at this point in the book that I completely lost it. I can't even begin to imagine the grief and pain this family has experienced. No parent should have to watch their child die. No parent should have to carry their lifeless child to an awaiting ambulance to be driven away and gone forever.

Hug your children tighter. Spend every moment possible with them. Quality moments. Read to them, play a game with them, talk to them, listen to them. While most of us will never endure what the Desserich's have had to endure someday our children will grow up and go out on their own. And those moments will be gone forever.

1 Brooke and Keith Desserich, Notes Left Behind (HarperCollins Publishers, 2009) pp. 238-239 (http://www.four51.com/UI/Customer.aspx?p=catalog&catid=0kaDsRcTd55fmH0t48Feb8KjYsYtIyEUKCAGTiDpilf-sGKGS36U1wQ-e-e&autologonid=d1809b2e-f892-406d-bc97-231012daf900&CEI=2dad191a-5565-4246-80a4-5adbd1d2a0fe)

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