Wednesday, March 05, 2014

Posting guard

A number of years ago, I found my husband lying on the floor next to our child's bed in his blue scrubs. He hadn't bothered to get a pillow or a blanket. He was in a fetal position, a sky-colored shrimp. When he awoke, I asked him if she had had a nightmare, since I hadn't heard her calling out, and he said no. There had been a child at the hospital where he worked who hadn't made it. Coming home from a late shift, he had gone in to make sure his child was all right. He stayed all night, watching her, grateful for her careless, graceful, magnificent ability to breathe.

When I started reading the Love4JLK blog, written by Libby about her daughter Jennifer's cancer diagnosis, I felt that same compulsion. What was once a nightly ritual--the checking of the children, that most exalted and beautiful of parental rights, our reward for whatever struggles we endured during the day, or whatever struggles we endured to bring the children to the earth--became more. I slept on the floor. I brought them into our bed. I clung to them. And I wished in a sense that I could do the same for Libby, post a guard for her and keep breath in the lungs. Now that her daughter has died, I continue the metaphorical desire to be the watch dog, to snarl at the dark. But metaphors don't mean much when children have died.

So I am turning my back on that and looking for pragmatic answers. Real things, that can be done in real life. Nothing will bring Jennifer back, but in a very real sense, some of these may keep another child, a child of the future whose diagnosis is written in her cells, with us, safe in her bed.

1. Read Libby's blog and share it widely in social media. You never know what may arise, when some powerful person reads her blog. It may be a Congressman or Congresswoman who rises up out of ire and grief to help fund pediatric cancer research. It may be a wealthy person who can, with one click of the mouse, completely fulfill the goal of the Jennifer Kranz Research Fund. Speaking of which....

2. Consider a donation to the Jennifer Kranz Research Fund. $30,000 of the $100,000 goal has been met thus far. What is the fund? It's research at Lucile Packard (Stanford University) where researchers are studying the literal tumors from Jennifer's body. She had a particularly aggressive form of DIPG, and her tumors may yield valuable information about this cancer.

3. Share widely this short youtube video in which Libby requests that the already-allotted cancer funding in the U.S. be more fairly distributed. It is shocking to learn that only 4 percent of cancer funding goes to pediatric cancer--and kids are more than 4% of the population.

4. Tweet the video to your representative. Almost all of them have Twitter accounts.

5. Write your representative. I hope to soon post a sample letter you can cut and paste, print out, put in an envelope and mail out. Five minutes and 40 cents.

6. Be gentle. Our time here is too short, even when not cut short.

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