Sunday, February 15, 2009


Bird's Eye Paint
Originally uploaded by matt.redsquirrel
Being in a state of the art children's hospital has its advantages. Like an Arts for Life program. They call themselves "Art Teachers", but it should really be "Art Therapists". They come to the room (if your child isn't allowed to leave it... as is our case) and sit with you and do a project. In our room, we haven't totally gone for the pre-planned projects - you can imagine why. But the art teachers understand our views, some of the interns even share them. So they come in and present the project and then Lindsay does whatever project she creates. Sometimes she does no project at all. She sits and chats happily with the "teacher" as she does a project. Sometimes I do a project and Lindsay makes the creative decisions. This is most common when she's not feeling great. She picks the color of paper, the shape of beads, but may not go through the mechanical of cutting, gluing, etc. Often, though, when she starts making choices, she perks up, sits up and the mood changes. It's amazing it leads naturally into Lindsay taking over. The cutting and pasting (her two favorites) begin. And then, somtimes, she just creates. One day the project was a woven valentine heart. We cut rectangles, triangles, circles, and squares instead. Well, I made a heart - but she created all the shapes you can imagine.

The constant availablity of art has been an inspiration to me. I have always had a desire to paint. To spread paint and create colors on canvas. Even when I was at my most creative - probably in high school - I never took art classes or workshops and therefore always felt I didn't "know" how to paint. This hospital, this Institution, has, surprisingly lifted my creative block. I started buying canvases of all sizes and bringing them to the hospital. We already had some acrylics from my mom and I got more from the AFL teacher. So I started painting. And Lindsay joined in. The pressure to paint something that looks like something or that looks good or artsy or whatever, was gone. I was just helping my daughter to slice through the boredom of another day in the hospital. And as a result, we have made beautiful, fabulous art.

The best thing about canvas (rather than paper) is I have art that I can hang directly on the wall - no need for an art portfolio or to clutter up the already cluttered refrigerator. Also, no need to buy expensive pieces or more affordable "art" mass produced in China for my walls. I have my decor, my child's keepsakes, and my creative outlet all in one.

I think some of the hospital staff and even art teachers were surprised at our comfort level in turning a 3 year old loose with acrylics. But really, who cares if you get some paints on hospital sheets? So we paint a little each day. Then paint on top of the previous day's painting. And after three or four days, we have a family painting worthy of MOMA. At least, in my biased opinion.

Friday, February 6, 2009

Mommy, You're Talking Too Much

Well, it's true. I've always been accused of having a big mouth. And while I know how to keep that big mouth shut in certain social settings, once I'm comfortable, I love to chat. And gossip. And tease. Well, we've been in this hospital, on this floor, for oh, I don't know 153 days (give or take). So, I'm pretty comfortable with some of our nurses. And when they come into our room, I enjoy the conversation.

Lindsay does not. She feels that adult conversation is over-rated. Downright annoying, in fact. Now, her annoyance isn't limited to my goofy, at times wholly inappropriate conversations with her nurses. Very early in our diagnosis, the hem-onc floor counselor came into our room. A quiet, shy man, he pulled up a chair and started to (more or less) read to me from his manual. Well, no one was up for that. Lindsay screamed, cried, protested in several languages. And he eventually dismissed himself -- never to return. The same sequence of events happened with the hospital social worker and the hem-onc psychologist.

So, it seems Lindsay is most annoyed by people in the counseling industry. Although, Lindsay surprised me when my dear friend, a child psychiatrist, came to visit. Lindsay had never met her, but actually invited her to color with us and to play games. Maybe the lack of a name badge helped.

Then there are the volunteers. Some are old, some are new, all wear coats, made of blue. Yes, the volunteers. It would be really unacceptable to disparage someone who spends their free time in the children's hospital on the cancer floor. They mean well and, for the most part, they are great. But imagine for a minute that you moved in to a new house. You settled into your bed, it had been a long day of moving boxes after all. And just as you were about to drift off, your neighbor walked into your bedroom, "Here are some cookies I made you!" You might think "yum, I love cookies", but most likely you'd be like, "um, hello! this is my bedroom". The next morning as you wake, there stands the same neighbor, hovering over you as you sleep, this time with a stack of pancakes. How long would this have to continue before you adjusted? For me, admittedly antisocial, I would not adjust. This hospital room is Lindsay's bedroom for 6th months. My bedroom too, I guess -- good thing we're comfortable co-sleeping! So when Lindsay started yelling at the volunteers, "WE DON'T NEED ANYTHING!" I didn't jump to reprimand.

And then there are the chaplains. Where the counselors and volunteers are a tad shy, willing to leave the room when a three year old starts yelling, the chaplains seem to feel they are exempt. The sign on the door says "Do not disturb" ... in they barge. Perhaps it is the direct line of communication with the Big Guy. Maybe they feel that their services are more important than, say, the volunteers. Lindsay doesn't seem to mind them. But Matt does. And he let's them know it. So, you know, maybe we can see where she gets it.

Finally, come the doctors. Smart. Dedicated. Focused. And ALWAYS, ALWAYS patient. In they come, white coats and stethoscopes. And Lindsay, bless her heart, does her best. If we're painting, they compliment the pretty yellow ... "IT A SECRET!" she screams. If she's wearing her tutu, "are we going to have a recital?" ... "I SHY!" and if it's the solar system book, well,she might, just might, teach them a thing or two about meteors and the fact that they are not "shooting stars" after all. If they ask for more information, though, beware ... "I DON'T WANT TO TELL YOU!!!!"

Clearly this is all self preservation. Maintaining her bond with mommy, preventing mommy from talking and shifting attention away from her. Keeping secrets - maintaining some sense of control in this nightmare. And, of course, conventional parents (be they doctors, nurses, or psychologists... wait, she doesn't have kids) probably can't fully understand why we don't reprimand this "rude" behavior. Although I will say, they often remind me that "She's just trying to exert some control". Bless their hearts.

How many more days? Who knows. Home can't come soon enough!