Saturday, June 07, 2014
We wait, as Rebecca lies still. Her chest rises and falls, her strong heart still beats. This body is ready to run and play. This body is growing and thriving.
The tumors in her brain have stolen away consciousness. Soon they will steal away breath and heartbeat.
Rebecca turned 6 today. She may have a tomorrow, but it won't be one she sees or feels. She may have two tomorrows as we all sit vigil, watch her chest rise and fall.
She will not have any tomorrows where she smirks at silly jokes, runs after her brother, or even cuddles her mom and dad. All those tomorrows are gone.
Thursday, June 05, 2014
We knew, from the look in the doctor's eyes as he came through the door.
But really, we knew before that. We knew from the way the anesthesiology doc who oversaw the MRI made sure that we were going to talk to the oncologist before we left the hospital. We knew from Rebecca's slow fading away from the world. We knew, in spite of the CT scan that had promised false hope. (I remember hearing the results of the scan and feeling depressed and a little angry with them. I wondered what the hell was wrong with me. It wasn't me; it was knowing in my gut that we were being lied to, no matter how innocently.)
Mike from Child Life came in to take Rebecca down the hall to the playroom while the doctor gave us the news. The genetic treatment had been ineffective. The tumor had grown considerably, and two of the flare sites were now larger and clearly emerging tumors. There was no point in continuing treatment, and with the metastisization, no other treatment options.
It was time to take Rebecca home and make the best of the time she has left.
The doctor asked if Kat and Eric wanted to tell Rebecca, and if they wanted him to help. They said yes. Ferrett and I left the room to give them the space they needed as a family. We didn't need to witness so private a moment. We were adrift in the hall, and Mike from Child Life offered to let us use the playroom, now deserted for the evening, to have a space to ourselves.
It's where I found myself with my hands over my mouth, my head pressed against the window, sobbing "No no no no no!" over and over again. And even as I cried, I wondered how many of the children who played with these toys are now buried in tiny graves. How many parents, grandparents, aunts, uncles, siblings, friends have cried out their despair in that room? How often had hope died here? How do they go on? How do we?
The bravery of the doctors and nurses and other staff that work in pediatric oncology is lightyears beyond my ken. When the doctor came out of the room, Ferrett and I were back in the hallway. Ferrett thanked him for what he was doing, and tears welled up in the doctor's eyes. As we left the ward, all the nurses and staff who knew Rebecca came to say goodbye, knowing that they would not be seeing her again. Their caring and compassion made me both grateful and awestruck. They see this so many times. Childhood cancer steals away so many bright futures. And yet they continue to open their hearts to these children, to care. It's a humbling thing to watch so much dedication where success is so small a commodity.
Back in the fall when we did the CureSearch walk, I was amazed by the involvement of the organizers, because their daughter had died. I thought, "if we lost Rebecca, I don't think I would have the heart to continue doing something like this." And yet, even though I know that she will not be there to run and chase and laugh next fall, I *will* be doing the CureSearch walk. Because no one should ever have to go through this. And I want to do everything I can so that those toys are played with by children who go on living.
Friday, May 30, 2014
I'm sure almost all of you have heard about LeVar Burton's wildly successful Kickstarter to bring back Reading Rainbow. The goal was a million dollars, and by the end of day three they will probably be hitting three million.
But almost as soon as the Kickstarter was opened, The Washington Post ran an article discouraging people from donating. You might want to reconsider that donation to the Reading Rainbow Kickstarter is completely wrong-headed and, I believe, points to one of the reasons why literacy is falling and continues to fall.
The article cites PBS' reason for canceling Reading Rainbow as "no longer the best way to teach kids reading skills." In the funding crunch of decreased taxpayer money for Public Broadcasting, there also came a tragic shift in the philosophy of the Corporation for Public Broadcasting:
"The change started with the Department of Education under the Bush administration...which wanted to see a much heavier focus on the basic tools of reading — like phonics and spelling.... Research has directed programming toward phonics and reading fundamentals as the front line of the literacy fight. Reading Rainbow occupied a more luxurious space — the show operated on the assumption that kids already had basic reading skills and instead focused on fostering a love of books."
In other words, Reading Rainbow was one more casualty of No Child Left Behind.
Reading Rainbow never had the goal of teaching children to read. As quoted above, it was all about fostering a love of books, the love of narrative structure, the love of story.
It is staggering to me that such a love is now considered to be simply a "luxury." And it is appallingly short-sighted. It begs the question: "what is reading for?" And if the answer is simply, "to minimally function in the world," then it's no wonder that literacy is dropping like a stone from the sky.
Phonics and spelling never caused anyone to fall in love with stories. They never introduced anyone to new ideas or different cultures. They never expanded anyone's idea of the world. The notion that we can create a literate populous simply by teaching them phonics and "fundamentals" is absurd. Why should kids care, if there is nothing to touch their imaginations? I've spent the last half hour looking at reading materials for different grades, and they are dreadful. Grinding sheets of uninteresting story snippets followed by multiple choice "comprehension" questions. I was a kid who loved to read, and I hated--HATED--the once-a-year assessment tests that included these kinds of questions. No wonder kids who are in these programs don't see anything positive about reading. There is none of the magic or wonder of good story-telling in that kind of learning.
Are phonics and spelling important? Certainly. Learning to read depends on them. But they are not the whole of the toolbox for learning to understand story and love reading. It's like teaching someone to use a hammer, a saw, and a screwdriver, and then stepping back and thinking you've taught them to build a doghouse. They cobble together something vaguely doghouse-shaped, and you lament that the doghouse is inadequate, but assume that all that's needed is better hammer, saw, and screwdriver skills. And when that doesn't work, you spend all your resources on new methods for teaching and testing hammer, saw, and screwdriver skills, never questioning if your student is missing some other important steps in learning how to use their skills to successfully build a project.
Will Reading Rainbow's return--onto the web and mobile apps--teach children phonics and spelling? No. But it will enrich their lives with story and enthusiasm for reading and books. It will help kids learn that their basic skills are for something more than just filling out comprehension worksheets and passing tests. And for our populous to be actually literate, those things are not a luxury item.
Sunday, May 25, 2014
I went to the pool for the second time today. Because it's the weekend, the main pool had no lap lanes, just one rope dividing the shallow end from the deep. The therapy pool had lap lanes, but there were at least two or three people in each one. So I decided to get in the main pool and just walk back and forth across the pool--short distances, but at least I was at a consistent depth. The first five minutes I was stuck inside my brain, trying to coach myself to a "this is recuperation; this is good" mentality.
And then an amazing thing happened. My body remembered how much I used to love to play in the pool. When I was in junior high, I would walk almost 2 miles every day that I could to go to the public pool. I didn't swim laps. I played tag and Marco Polo with friends; I dove off the low and high boards, climbed out and dove again dozens of times in a row; I just swam around for the fun of it.
When I was in high school and my first two years of college, we lived in an apartment complex that had a small pool. I was in that pool all summer. There were lots of teen girls who went to the pool and laid in the sun to tan, but not me. I swam and swam and swam. I would go by myself and toss a rock in, dive to the bottom to retrieve it, and toss it again. I would pretend to be a mermaid. When I was in college and working and not getting home until late in the evening after the pool was closed, I would climb over the fence and swim anyway.
Somewhere along the way, swimming turned into a goal-oriented activity--how many laps, how long. I got away from that some when we were in Hawaii and swimming in the ocean, but today I suddenly felt reconnected with the smell of chlorine meaning fun. I bobbed along, back and forth across the pool, eventually joined by another woman who couldn't get a lane and decided to try my workout instead. We laughed and chatted, and it was like those 15-minute friendships that you have when you're a kid on a playground: nothing lasting, but gratifying in the moment. There were a gazillion little kids playing in the water park, sliding on the slide, having fun. And I got to be one of them.
I feel so much more at peace with myself, because I found the fun again. On weekdays I will be relegated to the lanes, but I'm going to stop avoiding the weekends at the pool. I'm going to go and have myself some fun.
Thursday, May 22, 2014
The neurosurgeon's evaluation was, for the most part, good news. While the disc at the base of my spine just before the coccyx area starts is pretty much nonexistent at this point, and those bones are pushed out of alignment, he believes that I can avoid surgery through building up my core muscles and exercise. He is letting me start to swim again – in fact, encouraging swimming as the best form of exercise – and start to bike again! Running, however, is right out for the time being.
I have to start everything very slowly. Like he said go to the pool, walk in the water for a while, swim one lap. Or bike a mile. But he said that I can work my way back up to longer distances, as long as I do a lot of concentration on building up my core, which I also have to do slowly and carefully and gently.
I'm hoping to make at least two of my triathlons this summer. I will probably have to skip the first one, but he said to consult with my physical therapist about my progress before that. So maybe I'll get really really lucky.
The best news about all this, no knife!
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