Friday, February 20, 2009


Tuesday, February 17. I unpacked our suitcases. The ones from the last week of July.

Tuesday is the morning I've started to use for paperwork, because the house is empty for three hours. This Tuesday, both kids were home with a fever and there was no chance of the house being empty. I was disappointed. I've had this kind of half-success, half-false-hope thing going where on Tuesday mornings I would take a cup of 50 pennies and a quickly improvised plastic tip container, and put a penny through the lid slot of the container each time I got rid of a piece of paper on my desk. If things were going well, I could get through the 50 pennies more than once, especially if I gave myself 5 for phone calls. Last week the practice resulted in a clear space on my desk the size of three sheets of paper.

That wasn't going to happen today. I walked around the house and a big chunk of sludge was following me, composed of expectations, conflicting beliefs, and cement of mope. It was when I was walking into the house and kicking my shoes against a board to try to get the mud off them that I thought: as long as everything already seems impossible, I should think of something harder to do than the desk. The kids had fevers, but besides John running slow and sister hoping to watch lots of movies, they were okay. What is harder than the desk? I know, our taxes! No, that is paperwork. Okay, the suitcases.

We had breakfast and got the entire kitchen table set up for a large-scale tempera paint experiment with fingerpainting paper, involving a muffin tin and brushes for John, and various tools and license to directly squeeze paint from the bottles for sister. I only had to go back into the kitchen to help them every few minutes, which didn't matter because I knew I would be walking through the house a lot to put things away.

The two suitcases were on an extra bed in the bedroom. I got the cup of pennies and tip jar ready.

The first couple of hours were spent in clearing a path to the extra bed, because of the popcorn popper, ice shaver, food scale, Barbie roller skates, bag of used shoes that didn't fit the foot braces, last year's swim diapers, dollhouse basement, and all that stuff people usually keep in their master bedroom. I thought I might be defeated without having ever reached the suitcases, but we stopped and ate lunch and the kids moved on to other things besides paint. They were doing so well. They were expanding into the completely free time. There was a rough moment where John was sooo frustrated about a difficult flip-top squeeze cap combined with necessity of a diaper change, but after butting heads we stopped and snuggled in the recliner and then it was okay. He got back down on the floor. The kids quietly, recuperatively played more. The bedroom floor was swept and I was almost to the suitcases, having removed many of the things on top of them. I had lost count of the pennies around 108.

In the last week of June I had packed the borrowed suitcases, for our sixth trip to Massachusetts. They were full for the three-day train trip and month of therapy and classes. It was a good trip, but as you probably know, the morning we woke up to get back on the train to Texas, we didn't, because John just fell over and ended up in the hospital. So many new threads were begun then. As though displayed in a shallow, beautiful wooden bowl, the richness of all the therapy and classes now sat with hospital interviews, lab tests, insurance snafus, Google searches, and the notebook where I wrote all the grams of John's in/out food and liquid.

The suitcases were waiting in the guest room of our infinitely patient host family, being lived out of again while we waited for a handicapped sleeper car to open up on the totally booked Amtrak. (Due to a physical defect, I can't travel by air.) Once Amtrak was resolved, it came down to the subtraction of the numbers in the notebook. John was too dry: he wasn't drinking, and it was shown in his output. The hospital, falsely reassured by a non-drinking boy artificially plumped up with lots of IV fluids, had discharged him, but now he was dry.

There were a lot of phone calls and emails. I learned for the first time the fact that liquids are harder than solids to swallow, and thinner liquids are the hardest, which makes it hard for someone who only likes water. In the end, one of the doctors who called me back from Texas forbade him to travel until his urine output rose up to a certain number. What's more, she did the forbidding and instructing all in under 6 minutes. She had a busy, tired, but ferocious and brilliantly competent manner and she told me to stop trying to get him to drink. Instead I had to superhydrate his purees. Mix water into his applesauce and pureed spaghetti. I listened politely, and inside I was thinking: never heard of it. Could a few spoonfuls of water really help?

It worked, and we could travel. After one last set of labs, we got on the train. We still didn't know what had happened to him, if he would fall over again, and really what to do about it. I was nervous. I was thankful that I had recently acquired my first cell phone.

We made it to Texas.

When we got home, on the extra bed was some clean laundry from while we were away. The suitcases were put there, with crucial items pulled out. The small one quickly got used for a new hospital stay, then put back on the bed. I proactively stuck some good hospital toys in there for the seemingly inevitable next trip. And even though there were a few times when I cleared much of that space, it kept attracting items. It was starting to get embarrassing.

My attention was just not on the bed. It was on hanging on while whole new chapters of my kid unfolded slightly faster than I could comprehend. It was again on weighing everything that went in him and came out of him. It was on seeing him not get the predicted g-tube and being relieved, but still watching as though he was a stack of bent, full boxes that had just fallen down and would surely fall again. It was on writing down when he laid down and couldn't get up, how long he laid down, what happened before he got like that. It was on reading stories from other people working on some of the same things. It was on going to see four therapists and six doctors. On being given license to figure something out, figuring out The Resting Protocol, and it working.

It was on one day realizing that four months had passed, and he had gotten back to his old normal. Then, just as I started to stand up from my long-term crouching, box-stack-watching position, something came out of the sky: John started talking. That was a freak weather event, like an unprecedented 10-week storm of coins or candies, something good, that nevertheless surprises the crap out of you and knocks you down. For 10 weeks the storm kept coming and I laid on the ground beneath all the coins and candies while all the therapists said, "This is wonderful! Aren't you excited for all this talking!" Um, absolutely, but could someone shovel a few bushels of these treats off of me so that I can get up and go get a turkey sandwich?

I think I managed to get the metaphorical turkey sandwich a few times in that period, but the bedroom is beyond the kitchen, so the bed was still unaddressed.

Back to Tuesday: the cleaning had been going on way too many hours, with scores of kid assistance visits, and the suitcases were still there on an impressively clear bed, emanating some unknown substance that makes people leave their suitcases out.

No way, you guys. You are going in the closet. Now I was talking to suitcases. The kids were closing in on me, sister sitting on the main bed, John demanding to be entertained with random contents of the suitcases while I tried to put away the last 30 or so items. This was the last chance. Feeling like David Banner, I lifted up one suitcase at a time and forced my way to the back of the closet. The sheets, long unused except by the rabbit, were put in the washer.

It was clear.

Wow. The bed, and blenderless floor, looked really good. I kept popping in to look at the empty space. I was ready for the next new thing.

Well, after I got over being exhausted. The next new thing came Wednesday, blessedly insignificant, in the form of two crate-sized cardboard boxes of wrong diapers that a truck dropped off and someone put on the clear bed.

That space was awful for six months, and beautiful for 20 hours.

There is nowhere else to put the cardboard boxes right now. Oh, that bed looked so good empty. I might have to clean the closet.

But I couldn't clean it Wednesday, because that was the day we had to dive into juniper trees to catch 22 ducks.


  1. Inspiring - and reassuring too. (I'm glad to know I'm not the only one who sometimes doesn't quite finish unpacking my suitcases when I get home.)

  2. Well, we tried to help with that by not unpacking your suitcases, for you, ha ha! Okay, no one is going to get that except R.