Saturday, March 24, 2012

A yellow flag was hoisted at the end of the boardwalk today replacing the cautionary red flag -an optimistic sign for the day ahead. A purple flag was added below the yellow to indicate that harmful wildlife was in the water, which to me cancels out the yellow flag, but what do I know I live on a cul-de-sac. The potential for spotting wildlife was a beach bonus for the kids. Kind of like getting a stray onion ring in your order of French fries from Burger King. You wouldn’t order onion rings because they make you stink and if you order them you can’t order French fries because that is two fried sides and you can’t eat a burger without fries, but if it shows up in the bag it’s the best part of your meal. I tried that joke earlier today and it didn’t go over so well. I was elected to take all the noodles, floaties and flippers from the indoor pool back to the room while the rest of the crew hit the beach. I loaded my chubby stubbies with the pool peripherals and then couldn’t get the glass door open because I couldn’t reach the lever and hold my load. So, with sunglasses hanging on the end of my nose, I kept making little tiny tippy-toe jumps at it hoping to hit it just right. I guess slapping a noodle against the glass over and over finally got someone’s attention. Suddenly the door opened and as I looked over the top of my glasses balancing on my nose, a pleasant blond woman stood with the door open. “I noticed that you needed some help,” she said smiling saintly. “Umm, yes, sadly, I usually do, thank you,” I said, clamping down on the noodles like an unruly child. Then, she followed me around to the elevators awkwardly not knowing if she should walk beside me and have a conversation like old friends or follow behind me like the tiny Wide Load escort. Of course, she had to push the elevator button because I had a death grip on the floaties, and who comes around the corner to join us in our wait but her partner-in-tanning. So, as the bell dings and doors open, Barbie and Ken both step aside to let poor me board first. Standing there like Dollar General’s summer bin puked on me, I tried to keep my eyes diverted from these two tan, fit and blond people. The kind of beautiful people that you know they know they look good, and if you look at them you are afraid that you can’t look away which might make them think you are some kind of crazy but really you just don’t get to see people like them unless you get to go to the beach and they hold the elevator door for you. So, he asks what floor and I mumble something horribly noninterpretable, and then just say “really, any floor is fine. I’ll get off anywhere.” So, as we slowly move bubbly Barbie in her wide-brim straw hat and bright sarong kindly says, “So, you’ve been swimming. Have you been swimming in the ocean today?” Again with the mumbling, then I think of something funny to say and said, well, I said the thing about the kids and the purple flag and the onion ring at Burger King. They just kind of look at me with glued smiles. “Ya know because sometimes when you go to Burger King…. Onion rings are dumped in the tray next to the French fries…. One falls over to the French fries side… ya know at Burger King, they have the fries AND onion rings… it’s like a little fried bonus…” Still, just the polite nodding, then I realize these people never have a conversation with the words ‘fried’ and ‘dumped’ in them, and of course, don’t go to Burger King. Thankfully the doors opened or I would have jammed a flipper into the crease and pried them open and jumped out mid-floor. I escaped, but not before a noodle snuck in a little thank you tap to Ken’s Zachary Prell swim trunks.
Other than that little smack of reality, and the couple of hours I spent waiting for maintenance to find the spare key because we locked ourselves out, we had a pretty good first day at the beach. The girls have been out all day, either at the beach or pool, and Caleb really took to the beach better than I thought he would given that he gagged when his toes touch the sand the last time we were here. Eli has been a little low-energy today, which I was really surprised. I’m afraid he is a little sad because he is realizing how limited he is in what he can do, and what he feels like doing. I think it has been tough on him to watch Abbey and Hg out in the water and in the pool. I’ve made them come in closer and play with him some, but it’s their vacation, too. When we are at St. Jude, he can do pretty much what everyone else is doing, but when he is with the girls his limits are highlighted. He asked a couple of times if he could get a little deeper in the water, and when I said, no, he didn’t fuss or ask again. The eating continues to be a real issue and I think affects how he feels. He is so skinny, and just looks so weak in every move he makes. To get off the couch, to pick up a toy, he just looks, well, sick. I just watch him all the time. I watch him sleep, I watch him blink, I watch him chew his food, I watch how he pushes his Matchbox cars through the sand and raise his little finger. Sometimes when I’m watching him intensely, trying to burn each moment into my longest-term memory, I wonder if I’m watching him playing or if I’m watching him dying. It’s hard to tell. The picture I’m sharing today is of Eli at sunset tonight. Upon first glance, it looks like a simple picture of a kid on the beach, but looking more closely you can see the colored lines on his back. This is where they marked him to line him up on the radiation machine so that the hits were on target each time. On the side of his head is the top of the shunt bulging just below the half-circle incision scar. Down the middle of his neck is the scar where it all began. Otherwise, it is a simple picture of a kid on a beach.

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