Tuesday, September 25, 2012

Eli at the Huntsville St. Jude office naming
the cars that go by on the street below.
So many things are the same and so many things are different here at home as we find our family unit legs again. There have been many ladies come and go from my house over the last nine months, either cleaning, bringing food, doing laundry, putting away groceries, or keeping the kids. When I came home from Memphis, the house was the same, except really, really clean, and there were subtle changes from having to have so much help, like the pantry was filled with food I didn’t recognize, and Caleb’s pajamas were now with his socks and underwear instead of in a separate bin. The refrigerator was desperate to be cleaned out, too. But, the neatest thing I’ve ever noticed (actually a while back) was that someone doing laundry actually hung all the girls’ clothes –play clothes and school clothes-according to color and shade. She (I’m pretty sure I know who, and it wasn’t asymmetrical Melissa) hung all the pink together leading into the reds, leading into the purples, leading into the blues, etc., according to the color wheel. It made the long walk-in closet look like a rainbow or an organized Lego box (hint at who it was). My OCD smiled. It was also interesting that Vic had organized a closet that did not involve the anal placement, packaging and/or labeling of unused, unneeded, outdated electronic equipment or supplies. We have a big closet that is intended (by me, yes) to be a “working” closet, as in not for storage, but to shelve things that we use and need access to, but also that need a home when not in use. We have family games, kids’ activities and crafts, extra school or office supplies, drawing/coloring supplies in this closet. Many times I have organized this closet, trying different ways so that the materials inside were accessible and easily kept in order so that they were accessible, but no one else cared, including Vic. So, anytime something was used out of the closet, it just got put back wherever. I gave up. But, with me gone, and Vic having to deal with homework, he found himself hunting in that closet, so he (using the bins I had already in there from my failed attempts) got it in order again. Hopefully, now, that he has experienced the frustration, it will be the useful space it was intended to be. Another change was that Vic folded some laundry while I was dealing with the girls’ homework and supper one night. That is huge. Many years ago, right after Abbey was born, I was struggling with the day’s work and had a load of laundry on the couch. Vic came home from work as I was preparing dinner - which I actually did back then, and hope to get back to doing as one of my changes - changed his clothes and sat in the floor in front of the couch to watch TV. I asked if he could fold while he watched. I will never, ever forget what he said because it is scorched into my memory. “Sure, will you come to my work tomorrow and do my job.” I never asked again for help with anything that wasn’t computer related, or auto-related (two things I know he enjoys). If he offered, it was up to him, but I wasn’t asking. He has always been chief among daddies dealing with kids, baths, bedtime, whatever they needed done, but he has never offered to fold laundry while I was here (busy or not) until two days ago. So, for him to voluntarily fold some laundry with me in the immediate vicinity is big. He is also getting home on time from work, which he has rarely done even when he said he was going to and even when he wanted to. So, it is strange to have him here before supper, and helping with homework, too. I’ve always had to juggle and scream about homework between the evening hours of three and six or so, and then he was a last resort for math if I absolutely couldn’t figure something out, like late fourth grade math and up. But, he has had a taste of the kids and their homework now, so he tackles whatever they are working on or whatever is due.
Buddies waiting at the grocery store.
I’ve also noticed that the girls seem to have a new respect for Eli. That may fade, as he begins to regain little brother activity, but before the sky fell I would just fume at their treatment of him. One time I even got so mad that I told them every evening at supper they had to say something nice about him to him. My anger escalated and I said that they would even have to hug him. Then Eli raised his hand and said “Um, can I have a say about that?” Me, personally, I have so many changes that I need to make, it is overwhelming and I don’t even know where to start, but color-betizing the closets seems like a good place. Eli had a decent day, no change on the eating amount. Thankfully, he had maintained his weight, but they really expected him to be increasing by now, so they are adding a mild steroid that is a stimulant. He already takes one stimulant at its max dose. Other than that, everything else was good. He has no strength, and yesterday, he fell getting out of the SUV, hitting the back of his head on the garage floor. He hit right at the shunt valve area, and screamed and cried. I was terrified that he had done something really bad. I called St. Jude, who had me call our local pediatrician. A small knot rose just beside where the shunt is bore into his skull. But, he has seemed fine, and by the time the doctor saw him today, there was no sign of anything. So, I think he is good, but it was really scary. I was trying to come up with a cool way to protect him, so if you see him at church with a football helmet on, we are just going to say that that is his style, that his thing. That just seems cooler than me pinteresting him a bubblewrap hat.

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