What the Hell Were They Thinking?

Argh! I cannot freaking believe that the Nobel Prize committee chose Barak Obama to receive this year’s Nobel Peace Prize. I thought you actually had to do something to get the prize. What are they thinking? They think he’s changed the tone of foreign relations?? They should have given the prize to the American people for electing someone who professes an interest in creating peace in the world, not to him for what he might do. Lord knows we could use the money.

It could be that in the future President Obama will achieve great things. He’s off to s slow start, but we can hope, but right now he does not deserve to be in the company of previous winners such as the Dahlia Lama, Martin Luther King, Jimmy Carter, and Al Gore. The Nobel Committee has cheapened their prize in my opinion. I don’t think Obama deserves the prize just for not being George Bush as laudable as that accomplishment is.

Down's Syndrome Dementia

As if having a friend and neighbor lose her step-son abruptly in a motorbike accident weren’t enough, I’ve had another occasion to feel afraid as a mother. In the life of a parent of an offspring with a disability there are markers that can be painful. The diagnosis, when the gap between them and their peers begins to widen, when the Spring arrives when in another world the child would be graduating and making plans to go off to college.

When I was ten or eleven the mother of a classmate had the last of six children. One day when I’d been to the mailbox with my mother she stopped to talk to a neighbor in the street. They started talking about my classmate’s mother.

“Did you hear about the baby?”

“Yes, a Mongoloid. So sad. They’re hideous creatures you know.” Two things flashed through my mind simultaneously. First, Kevin wasn’t Chinese. Second, how sad for the family to have a hideous baby. That notion couldn’t have been farther from the truth.

About twenty years later I had reason to remember that incident. It happened at in the pediatrician’s office when my daughter was six days old and he told me that he wanted us to take our sweet baby girl to the University of Washington to be tested for Trisomy 21 or Mongolism. Well, I knew he must be crazy because there was nothing hideous about my baby girl. We were both right. She wasn’t hideous and she did have Trisomy 21, also known as Down’s Syndrome.

At the time of our daughter’s birth, her father and I spent a lot of time with my classmate Kevin. Needless-to-say he understood what we were going through and understood our future. He carried messages from his mother to us and we were encouraged by how well his brother Bobby was doing. Bobby had learned to read and write and was learning to work.

When there is a divorce a couple not only splits up the furniture and household goods and makes arrangements for the children, they split the friends as well. It’s not necessarily intentional, but it happens. Amy’s dad got custody of Kevin as a friend and we drifted apart. His family was raised across the street from my current husband and so I’ve had the occasional update on the family, but once my in-laws moved away from the old neighborhood in Bellevue we heard even less. Recently I reconnected with another of Kevin’s brothers on Facebook and last night learned that he is dealing with one of my worst fears. Bobby isn’t doing well. It is widely documented that people with Down’s Syndrome age faster than the rest of the population. When my daughter was born we were told that no one knew why that was. We were also told that this was actually good news because historically they died quite young because of respiratory infections. The advent of antibiotics had greatly increased their life expectancy. When you are hit with life altering news you grab at things to be thankful for. When your daughter is six days old the notion of her living into her thirties is comforting. It sounds llike forever. Until it arrives.

When Amy was in her early thirties her Department of Developmental Disabilities case worker asked if we’d seen any evidence of Down’s Syndrome Dementia. Ah, what? No, I don’t think so. That’s right, we were told she’d age quicker. She doesn’t have any gray hair. Mood swings? Well, she gets teary every month, but I’ve always laid that to hormones.

Now every time Amy has a fit of temper I think, is this it? So when Bobby’s brother sent me a private message on Facebook to say that he’d begun to slid downhill about eighteen months ago it was another punch to the gut. Bobby is 47. Fortunately, although both of his parents are passed he has siblings who care for him. He lives in an adult facility and two of his brothers are his guardians.

I am reminded again to bless every day I have with those I love just as they are. I pray for their health and prosperity and ask that I not have to bury one of them. I also know that we do not always receive the answers we want. The woman who said that having children was agreeing to having a piece of your heart walking around forever certainly nailed it.

Foot Steps At the Door

In the spirit of the season I am dipping my toe in the scary stories river. Blogonia Grandma L. reminded me of this story when she posted her own scary story on Pet Peeves and Other Ramblings.

The essentials of this story I believe to be true. It was told to me in the 1970s by my sweet little grandmother. She was a daughter of the Missouri Ozarks of Dutch and English extraction. That meant that you could eat off her floors if necessary and that she could keep going like so many of those who’d experienced the Great Depression or Hard Times as it was called in the Ozarks. It is possible that when she was telling me this story that she was pulling my leg, but Grandma wasn’t given to disassembly. She did not appear to be kidding and I remember how the hair stood up on the top of my arms and the back of my neck when she told me. Everyone involved in the story save my aunt, who was a child at the time it happened and says she doesn’t remember the incident, is gone. I wish I would have paid more attention to the details my grandmother told, but in the interest of the season and a good story I’ve tried to recreate it as accurately as and entertainingly possible.

The time was WWII. My father and his older brother were in the Navy in the South Pacific. They’d been at Kaneohe Bay on the island of Oahu on December 7th when the Japanese forced the United States into the war. There were no cell phones or email in those days. Communicating with the Hawaiian Islands could take days at least and so for several days my grandmother hadn’t known if her boys were dead or alive before a wire came from them saying that they were alive. The United States had been attacked and that set people on edge. Would the Japanese or Germany attack the U.S. mainland? Americans did what they’d done since Valley Forge. They picked themselves up and began doing what needed to be done to win the war amidst blackout curtains and civil defense exercises, especially on the coasts of the United States. People felt a lot like people felt after 9/11. No one knew what would happen next.

While their older sons were away fighting in the Pacific, my grandparents lived modestly in Vancouver, Washington with their two younger children. Vancouver at that time was a midish sized city across the Columbia River from the larger Portland, Oregon. One night Grandpa worked late at the shipyards on a literally dark and stormy night. It was one of those storms the Pacific Northwest is notorious for when the wind and rain come out of the Southwest dumping rain on that corner of the country, keeping it green. Grandma was home with the children.

During the course of the evening, Grandma and the children heard footsteps on the front porch steps. Probably Grandpa, maybe a neighbor. Who would be out in weather like this? Grandma wondered. They waited for a knock, but none came. Neither did any retreating footsteps. Grandma looked at the children. The children looked at Grandma. Tenuously Grandma cracked the front door to see who was there. She found no one. The electric bulb above the porch cast a yellow light on wet and muddy footprints leading up the steps to the porch, two foot prints squarely before the door within knocking distance, but none led away.

Grandma quickly closed the door. She and the children sat on her and Grandpa’s bed listening to the wind and the rain until he came home from work.

Epilogue: Twenty years after Grandma told me this story and some fifty years after it happened something of a similar nature happened to me. At that time our family had a furry doorbell in the form of a Toy Fox Terrier named Speck for Pee Wee Herman’s dog in Big Adventure. We also had a squeaky front door. Certainly the sound of the door bell was enough to send the dog into a frenzy of barking, but as little as the squeaking of the front door was enough to set him off.

Also at that time we had a friend living with us. Joe. Now Old Joe was charming and funny and a pathological liar, but we didn’t know that last bit when we let him move in temporarily which turned out to be eight years. It was possible that Joe was responsible for what happened, but I don’t believe it. It would have required more time than he ever had of a morning. Joe was the first to leave while I was still making lunches for the rest of the family and getting ready to leave for my job at a middle school. He was always late and always rushed to get to his job at a junk yard in Tacoma.

On this particular morning nothing seemed amiss. Joe had left for work and I was finishing up in the kitchen. The front door opened which sent Speck into a spasm of barking. I assumed that Joe had forgotten something.

“What did you forget?” I called from the kitchen.

When I got no answer I came around the corner from the kitchen to find the dog looking quizzically at the front door. I peered through the faux leaded glass in the door and saw that Joe’s car was not in the driveway. I went down the hall and checked his room. Empty. I cracked my son’s door, but he was asleep. On my way upstairs I locked the front door.

A search of the second floor yielded nothing more than my sleeping husband and daughter. I sat down on the edge of the bed to consider what had happened. I didn’t think I’d imagined the door opening because the dog had heard it, too. There’d been no car in the drive so it wasn’t Joe. Had someone seen him leave and walked up and opened the door, closing it when the dog began to bark? I got dressed and left for work, but not before going around and making sure that all the windows were closed and the doors locked.

Fellow blogonias, listen up, Michelle Mitchell of the blog Scribbit has organized a writing contest around the seasonal theme of fear. Check it out here.

Keeping Time with Amy

Even though she doesn’t entirely understand the concept, my daughter Amy has several ways of keeping track of the passage of time. She keeps track of the seasons by the condition of Patterson’s Fruit & Vegetable Stand which we pass by every time we go shopping. After sitting closed for a couple of months she knows they will have flowers for Valentine’s Day, then again for Easter and Mother’s Day. She anticipates summer, watching for the place to open with its fruit and vegetables. She knows that as the pumpkins appear that Halloween is in the offing and that when the stand closes after Halloween they will reopen after Thanksgiving with Christmas trees.

Amy keeps track of the months by family birthdays. She knows when everyone’s birthday is, hers being the most important. Amy looks forward to October as much as I do, but for a different reason. It is the month of her semiannual perm. Amy is stuck in the ‘80s. She loves the music, the movies and the big hair. It’s the decade she grew up in. She began getting her hair permed in about 1982 and has twice per year since then. Like many people with a disability, Amy is routine bound so perms in April and October are a must. Her stepfather’s one request—that she not look like a poodle. We try.

There are no accidents in life. I believe that as long as you are open with the universe and have a need that situations and things will come along to fill that. When we moved to Gig Harbor, WA from the Long Beach Peninsula we needed to find someone to cut the boys and my mother’s hair and to perm Amy’s. We knew no one, but my husband who had lived in Gig Harbor for only a couple of months when we arrived. Quite by chance we wandered into a beauty salon located in Gig Harbor’s main shopping center and met Carrie. That was nineteen years and lots of perms and haircuts ago.

Besides being a good hairdresser and a nice person, it turned out that Carrie had a special needs daughter of her own, younger than Amy. She understood and treated Amy like a princess when it was her day to get her hair done. Over the years and over Amy’s roller festooned head we’ve traded war stories. The girls were alone the day of the Nalley Valley earthquake. Well, Amy wasn’t quite alone, but Dave was on his way out the door to work, pausing just long enough to make sure she was okay. Ginnie really was alone, but had the presence of mind to scoot out the back door on her bottom to the back of the yard to wait for Carrie to come rushing home. I rushed home, too, having borrowed a van from school since my purse was in the school and they wouldn't let me in to get the keys to my car. Dave had locked the house and I had to throw rocks at Amy's window. She was not pleased when she opened the window and asked what the heck I wanted. I finally got her to come downstairs and open the door for me so I could use the bathroom and get a coat (it was February). It seemed that Amy had been asleep and the earthquake had waked her, but the lights were on (ours were not at school) and the heat on so she was more annoyed at the rude awakening than anything else.

Carrie and I had both the girls employed when they exited the school system and both of us discovered that it was more trouble than it was worth to have them working for a few hours per week at a minimum wage job that caused their social security to fluctuate monthly and if a job ended trying to get the full SSI reinstated took something next to an act of Congress.

We’ve commiserated at the exorbitant cost of handicapped seating at performances and the logistics of traveling with them. Although Amy is not in a wheelchair she is short and short of stamina. We arrive early to movies in the hopes of having her sit behind a wheelchair spot and then pray that no one in a wheelchair needs the spot. One night we were outfoxed when a literal busload of wheelchair bound movie goers arrived. Amy ended up in the front row in order to be able to see.

So yesterday was the big day. I sneaked away from work a few minutes early to go home and get her. At Amy’s birthday I take the entire day off from work and we really make a big deal, usually ending with a family dinner at whatever restaurant she fancies that year.

Over the years we’ve followed Carrie from shop to shop since our beginning with her in 1990. One time, when the shopping center burned down and the shop where she worked along with it, she even came to our house to cut my husband’s hair. We were a little early and Carrie had gone home to check on her daughter, but we waited with varying degrees of patience for her to return and get to the business of Amy’s afternoon of beauty.

Part of Amy’s perm routine is fast food. I don’t remember how it began, but the original shop was near to a McDonalds and since the process takes so long we began entertaining her with a chicken sandwich and fries. Now Carrie’s shop is right next door to a Burger King which is very handy so once her hair was wrapped around pink curlers she happily munched a chicken sandwich with a chocolate milkshake which was a first.

I would like it if Amy just gave up the ‘80s look, but then I wouldn’t get to sit and gossip with Carrie so we’ll keep going as long as Carrie keeps dishing out the beauty.

Let the Holidays Begin

We are a passionate family. Some of our passions are peace and liberality. In December of 2003 my husband put up a huge peace symbol on the side of our house. When New Year’s had come and gone Dave began taking down our outside lights, but I suggested that we leave the peace symbol up until the wars in Iraq and Afghanistan were over. In the intervening years our house has become known as “the peace house” to children. An elderly man at the hardware store told the husband of a coworker of mine that we are witches and that the peace symbol is a witch symbol. We are also a point of reference when people give driving directions.
Along in the Spring the lights, which are on a timer, begin to give out and when the sign begins to look ridiculous my husband turns it off until he can get more Christmas lights. When it happened this year we could not find any Christmas lights except at Michael’s Arts and Crafts. What they had was intended for weddings and cost more than we were willing to pay so the sign stayed dark all summer. People stopped by when they saw us in the yard or complained when they met us at work or in the store. Last week Dave had a day off and we decided that Target might have Christmas lights. We were rewarded and bought two heavy duty strings. Yesterday the lights went up and on.
We are also passionate about Halloween. Is I posted before, Autumn is my favorite season and Halloween and Thanksgiving are my favorite holidays even though we get few or now trick or treaters for Halloween. One year we got only our youngest son and his best friend. They are now past 25 and haven’t rung the door bell in a long time. We decorate to please us and now have a grandson who thinks that every day ought to be Halloween. We used to wait until October first to get out the boxes of Halloween decorations. Now GrandDave’s birthday on the 22nd of September signals the beginning of our All Hallow’s Eve celebration. Grandson Gabriel could hardly wait and had been making his own decorations for weeks and parading around in his Dracula costume.
There was snow up at Crystal Mt. today, just a dusting, and the low tonight is to be 45. I can live without the snow, but I do enjoy the nip in the air and seeing the beginnings of Fall.

The River Goes On

“Woman can change better’n a man. Man lives in jerks–baby born, or somebody dies, that’s a jerk–gets a farm, or loses one, an’ that’s a jerk. With a woman it’s all one flow, like a stream, little eddies, little waterfalls, but the river it goes right on. Woman looks at it like that.” ~Speech of Ma Joad in Grapes of Wrath

As our school community deals with the loss suffered by two of our teachers when their son/stepson was killed in a vehicle accident in Tacoma Saturday night we are doing the things that people, especially women, do when there’s a death or illness. We cook. We know that grieving families don’t need to be cooking, but need food regardless of what they think. Our sunshine committee at school is organizing meals-in-wheels. The year I was in the hospital for ten days with pneumonia and off from work for a month, the staff at my school kept Dave and the children from starving. It’s only right that I give back.

Previously I posted my Aunt Sandra’s Quick Chicken recipe, but I’m including it again because it’s what I’m making for our neighbors. It’s strictly comfort food and if there ever is a time that people need comfort and comfort food it’s when there’s been a death in the family.

Aunt Sandra’s QUICK CHICKEN DISH
1. 2 or 3 skinless, boneless chicken breasts
2. a pkg. of sliced Swiss cheese (preferably lowfat)
3. a can of mushroom soup
4. 1/4 cup white wine
5. 1 box StoveTop Stuffing (chicken flavor
6. 1/4 cup melted butter

Spray a 9 x 13 pan. Heat oven to 325. Slice chicken lengthwise and cover the bottom of the dish with raw slices of chicken. Cover the chicken with slices of Swiss cheese. Combine soup and wine and pour over all. Add the melted butter to Stuffing to moisten Stuffing. Sprinkle on top of dish. Bake for 1/2 hour uncovered. It can be left in the oven longer. Can also be assembled ahead and refrigerated until baking (same day).