Tuesday, June 7, 2011

Notes Left Behind

I just read a book, Notes Left Behind, written by a parent whose sweet daughter, Elena, passed away from the same brain tumor that Oliver has and I was amazed and saddened to see how many similar thoughts I've had throughout Oliver's journey. I wanted to share some of the excerpts that touched me.

"... I don't think that every moment demands a lesson. All I know is that these memories need to last. Whether we go to the Eiffel Tower or to the grocery store, they both can be treasured moments if we make the most of them."

"It's funny how you never know how much you can handle until it gets worse. And just when you get used to that, it happens again. But somehow, even with this experience you find a way to make it work because that is how you cope. Not because you deserve it or because you need the experience to set priorities, but because it's the human thing and it is life. And through this experience we will grow, find out what the holiday means and learn to expect more of each other. Together we will use this struggle to make us stronger as a family and support each other when we break down. That is what a family does and how we cope."

"The isolation and fear, however, are always present."

"Our Christmas gift was Elena [Oliver] this year."

"Congratulations! You have cancer. I look around and see the signs of friends and family trying to cope with the news. The child who was healthy yesterday is terminal today. And we do the best we can to help. Sadly there are few options and very little we actually can do. In Elena's [Oliver's] case there may be none. So we give her toys, buy her clothes and spoil her."

At St. Jude... "It seems that in our group there are two types of families. First there are those facing months, if not years, of additional chemotherapy and surgeries. These families have two weeks to one month off to go home, but then they will return for another dose of severe chemotherapy and weeks in the hospital. And while they have the most difficult path ahead, their prognoses are relatively positive. Then there are those who are here for radiation only or combined radiation and chemotherapy treatments. They're going home for good, with the exception of an occasional checkup visit once a month. In some of these cases, the prognosis is still almost 85 percent survival. I envy both. We too will go home after our six weeks and return for only monthly checkups. And while I certainly love being able to take my daughter back home, I'd spend weeks, months and even years if it meant that the survival prognosis would be better than 10 percent. In a way, we are our own class."

"I looked at the snow skis and realized that Elena had never been snow skiing, let aloe even experienced snow deeper than six inches. I realize that this time is lost. All the things I planned to do with her are now fading and I may never have that second chance."

"You can diagnose the disease, but God keeps the time frame secret. I guess it's best this way to keep living and to see importance in every action. I see it now but only hope that the lesson will soon be over and she will be cured. Until then, every weekend, afternoon and morning will be different."

"When it ended and it was time to go, I picked her up, laid her head upon my shoulder and continued to the ferry that would take us home--never mind that my arms had fallen asleep thirty minutes ago. And when we returned, my arms ached, but so did my heart. For despair forces you to live in the present while your mind races to the future."

"Friends don't have to be the same in order to get along. Sometimes it is the differences that make a friendship work."

"We need more time. The chance for miracles is today and the cure starts now. Tomorrow may be too late."

"... with the possibility of this being Elena's last vacation, I'm so apprehensive that I don't want it to begin... There we realized that it's impossible to stop time regardless of how much you love your children. You take pictures, dry the tears, relive the moments and hope that you never forget. But at the end of the day, you look forward, stop thinking and keep moving, for that is the only way to survive. This is ultimately what it's about when you deal with a terminal illness; you deal in the present and you never stop for fear that you will never get back up. And then tomorrow, you begin all over again. It's a type of exhaustion that you can't rest from and a feeling you will never forget."

There was so much more that I felt was lifted straight from my life, although we are experiencing it presently. I am grateful for all of the parents that have documented their journeys with this disease. I'm grateful for their honesty and I've gained so much strength and peace from their stories.

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