Wednesday, April 25, 2012


I had to wash my hair with hand soap this morning. I just reached out from the shower curtain and pulled the little lever on the wall in the hospital room bathroom and a little drop dripped into my hand. It only took about 25 handfuls to work up a good lather, but my hair is clean and sterile and smells like a fresh latex glove. I really wanted to whine about it, really wanted to just pout and complain, because I feel a need to pout, whine and complain. But even my hair won’t allow me to be negative because it looks really good. In fact, I would rank today in the top 100 of all hair days for me, which is a pretty big deal when you consider that most of 1985 it was purple or blue leaving few top spots available in the ranking. I even had two compliments from the time it took me to walk from our seventh floor room of La Bonheur Children’s Hospital to the elevator, go down and turn the corner to the gift shop. When I asked the cashier for shampoo from behind the counter, she said “you have beautiful hair.” I just narrowed my eyes and said flatly “yes, my hair hates me.” Then I took my vial of Suave and left in quiet disgust, conflicted at whether I would use it now or not. Complaining and whining is sticky business because of perspective. One woman’s complaint about using hand soap to wash her hair is another woman’s wish to just be able to take a bath in clean water. I know some of you are going to say “You go ahead and complain about anything you want to complain about” like I’ve been granted a pass because my child has cancer. But, there is no pass. If anything, I should be the last to complain because of perspective. Perspective is the figurative or literal range or angle of view of a situation or object. Standing in front of a computer screen with a digital image of the inside of your child’s body speckled with disease changes one’s perspective. During those moments that stand still as the doctor touches his pointer to the image that is so obviously your child because you recognize the curve of his shoulders and the way his head is so round and says “there is a tumor here, one here, one here, and half a dozen more” one’s perspective makes a painful adjustment. It hurts. During this metamorphosis of attitude simple things are made great, complex things are made small and annoying things are made comic fodder. I feel guilty to complain because compared to what Eli has to go through almost everything else seems trite. And having to use hand soap for shampoo is trite no matter with what it is compared. I just included that story for fun. But, I feel guilty to complain because with my new perspective I know there is always someone that wishes they were in my shoes. Yes, even my shoes; shoes that walk behind a wheelchair to push a boy through the zoo over and over again; shoes that walk a boy through labyrinth hospital halls daily; shoes that drive a boy to a toy store over and over again; shoes that are covered with sterile booties when they follow a boy into an operating room in order for me to be the last image he sees as his eyes close behind a plastic anesthetic mask; shoes that are left out each night ready to go again. But, there are shoes that don’t leave bedsides, shoes that walk without hope, shoes that didn’t have any of the seven, 13, 20 or 35 years my shoes may have to walk anywhere with a boy. So, with this new perspective how can I complain, really.
The picture I am including is of Eli at our half-way stop in Corinth MS. He (and I) really misses the Peppers restaurant in Athens, so we have stopped at this one a couple of times. Eli was discharged from La Bonheur today, and we are back at the Grizzlies House. He had the drain tube removed from his head, but is still having a rough recovery. We are back to nil with the eating, I mean he just crys at the thought of a pinch of anything at all. So, if he does that with pizza, you can imagine what it is now like to make him take medicine. We also believe that he had developed a drug allergy. We believe he is allergic to an antibiotic that they used post surgery and to the adhesive they use to hold their face down during surgery. He looks like a different kid he is so swollen around the eyes. So, we are watching him closely for that to flare up. In fact, after I post this, I may just take him over to be looked at, can’t decide. So, because of this surgery they have moved chemo back to no early than next Friday, but we won’t know until Thursday when he has another CT scan and appointment with his neurosurgeon who will give the go-ahead when he thinks it is safe. It’s been a rough few days with leaving home and then the whirlwind of a "welcome back we need to cut your son's head open again" for us at St. Jude.  So, I appreciate all your prayers for Eli.

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