Going Home

The day after we got back from June Crown, I got a call from Springfield, Illinois from the facility my handicapped brother lives in. It was the call I'd been dreading for years, and suddenly every one of those years of separation weighed heavily on me.
My brother has Down Syndrome, and was born with a heart defect that was considered inoperable at the time. All during our childhood, he never got any taller than 4'6" and never weighed more than 90 lbs. This was largely because of the heart condition, and his difficulty with chewing food. My parents doted on him, and having been told that he would not live to be very old, they figured they'd let him do pretty much whatever he wanted to do. So, he lived on hot dogs, applesauce, pudding, mashed potatoes, occasionally creamed corn or spinach, and ice cream. Lots of ice cream. And he drank strawberry Quick, which we all called "Silly Rabbit" because of the trademarked bunny that hawked this product.
He was fascinated with dogs and dinosaurs, and learned to identify almost every breed and species of same. He enjoyed listening to an extensive collection of LP's (ask your grandma to explain that to you) of Alvin and the Chipmunks. And he spent hours coloring. My most enduring memory of him will always be of him sitting on his bed, hunched over a coloring book, coloring away frantically and energetically.
My brother is Peter Pan. But I'm Wendy. Maybe that's why that particular story has always seemed so sad to me. I grew up, and married, and had kids, and moved away from Illinois.
My brother kept coloring.
My mother made the very hard and very brave decision to place him in a residential care facility after she fell down the basement stairs and twisted her ankle. She realized she wasn't getting younger, and she worried what would have happened if the injury had been more severe. Would Jody have been able to call for help? Or would he have colored away, oblivious to food and drink, until he passed out from dehydration? She cried every single day, sometimes more than once a day, for the next 3 years. I used to plead with her to just go get Jody and bring him home, and not worry, because I would take care of him if she couldn't. But she knew better than that.
She wanted me to have as normal a life as I could, and I'm very grateful today for that decision.

So, my brother has lived with the Franciscans in Springfield for nearly 30 years now. Amazing.
And the head nurse called, and they were very worried that he was complaining of not being able to swallow without pain, and he ended up dehydrated, and had to be hospitalized and given IV fluid. They discovered that his heart is now 3 times normal size, which is not good because bigger means weaker in this case. He also has arthritis in his hips, not unusual considering he also was born with abnormal hip sockets and a tendency for his hips to dislocate. He used to walk with a swaying, stiff-legged gait. My Dad called him "Wiggle Butt". He no longer walks, due to the discomfort mostly. During the time he has lived with the Franciscans, he put on weight, because unlike my parents they actually expected him to eat somewhat normally and would not let him have ice cream unless he finished his meal first. He gradually gained weight over the 12 years that my husband and I lived in Illinois, and we took him home for all the holidays and his birthday, and some other weekends. My kids grew up with him as a frequent, eccentric repeating character in their lives. He did his best to present an authoritarian persona to them, which we all found very amusing since it was rather like being lectured by an elf. But now, he just isn't able to eat that regular food; it gags him and he throws it up. So, he's gone back to his preferred diet after 30 years, and he's shrunk back down to about 80 lbs.
His doctor says there is nothing to be done. Feeding tubes would just cause a fluid imbalance that would stress his heart, as would IV's. The facility called to let me know he is fading away.
For 12 years, we had him in our home for a great deal of the time. After moving to California, he came to visit 2 times, bringing oxygen with him. Finally, one of the doctors said he should not fly any longer due to the cardiac condition. Since we have no living family in Illinois any longer, and since Jody usually is good for about an hour of chat before ignoring you in favor of coloring, it seemed wildly extravagant to fly out to spend part of an afternoon with my brother. I'd also have to rent a car, and book a hotel room for 2 days -- just to spend a couple hours. There were so many other things to spend that money on, when you have 4 kids and 7 grandkids. And like so many other people, I seemed to believe that time was not passing. I had actually asked for 2 weeks in August, planning on going back and visiting with Jody and maybe spending a couple days in St. Louis and a couple more days dragging Miach around Central Illinois to my childhood memories. But the facility did not react with enthusiasm when I reported this plan to them, so I thought about it.
I called my work on Tuesday following Crown, and told my supervisor that I would need to take the next week off. I looked into tickets, realizing that I'd have to pay for 2 seats on the airplane, because I've gotten so damn fat that squeezing into one seat has been torture for years and flying is such misery anyway ---why not at least buy myself some room? And then it occurred to me to look into Amtrak.
I ended up spending less on the entire trip, including car rental, hotel room for 2 nights, and meals than I would have spent on the tickets alone to fly. And I was relatively comfortable. It was also easier on my spirit, allowing me to make the transition emotionally as well as physically from California to Illinois.
My brother looked the same to me as he did the last time I saw him, nearly 12 years ago. Although I noticed that in the pictures I took, he looked like a little middle-aged elf. And I know I look older to him. He kept talking about "my other sister" -- you know, the young one he last saw 12 years ago.
He visited with me for 8 hours. And he ate an entire container of sherbet, and drank a whole glass of cranberry juice. The hospice nurse came and admitted him into the hospice program, and I signed the papers. On Monday, the hospice chaplain called me and offered support, and we discussed whether Jody would like to talk to him.
I didn't mention that besides coloring, his next most favorite activity is talking about every person or animal that he has known who has died. This started with my father's death, and we all thought he'd get it out of his system within a few months, but he never did. And as the years went by, he added my mother and various dogs and cats, and then men who died at the facility. He would talk endlessly about them.
A great deal of our visit was spent in him talking about our dog, Freckles, who had snapped at him because of pain, and had eventually been put to sleep. He would bring this incident up over and over. He also brought up my father becoming impatient with him and demanding he pick up his toys at some point in time.
He doesn't realize it, but he's led a blessed life if these are the two harshest memories that he has -- which they evidently are.
The folks at the facility were very supportive, and they reassured me that Jody has lived there for 30 years and it is now his home. Several of them told me they loved him. I cried, and Jody comforted me. We agreed to use Web video and Skype to talk with Jody, which hopefully will work out better than just voice phone. He has a tendency to zone out while on the phone, and often shakes or nods his head instead of answering. At least this way, we can see him and get some non-verbal cues.
I don't know where this summer will lead us. His heart could suddenly give out, or he could live on ice cream for God knows how long. I will eventually have to fly back, but I am grateful for the train trip this summer, and the sense it gave me of place and time.
The picture is of the Amtrak station in Springfield, Illinois, which smelled like my grandfather: pipe smoke and dust.

The Roundhouse Goes to Crown

Here is what the Roundhouse ended up looking like. We are well pleased with it. In the picture on the left, on the left margin, you can see the dog pen. If we had to put it inside, it would easily fit -- but we don't have to, because the dogs can no longer burrow out from under the tent walls. The walls and floor are sewn together, which makes me happy I chose this option, having completely forgotten the dogs and thinking only of rain and ease of erecting the tent. I'd guess it gives us about twice the space of our old pavilion. We had our bed set up in about 1/4th of the ground space. Miach put up his clothes rack in the middle, which also acted as a privacy screen for our sleeping area. We put our chests and storage boxes and the armor bag around the periphery. We still had a large area of unfilled space. The rug we brought, that had covered half the floor of the pavilion, covered about 1/4 the floor. (Which reminds me, I need to scrub the carpets and let them dry. Weather will be good for that this Sunday and for the next few days. They'll disinfect in sunshine.)
The tent went up easily, and one person could easily do it in about 1/2 hour or slightly less if they're good with a mallet. It is possible for one person to tote the tent, in bag, for a short distance. There was as much cross circulation as one could hope for, and the windows were well spaced for this; the vents also seemed to allow hot air to escape. I suspect that had we held June Crown in the Valley again, instead of near the Coast, we would have been hot but we were hot in the pavilion last Crown, too. For people that don't mind the extra work lining up tent and groundcloth, and who don't mind periods of little privacy sacrificed for greater comfort, the removable/roll up sides would be the better option in hot, dry climates, I think.
All in all, we are very pleased with this tent, and with our conversion of it into a Roundhouse. We are looking forward to using it frequently, and perhaps painting some more designs onto it. I am still planning on ogham letters listing our names over the door, and if I get real creative, maybe around the lower margin of the roof where the ropes are attached.