Wednesday, October 26, 2011

My Brother Has Down's Syndrome! (and I love him.)


I got to pick that name, as I was 12 (and very much into the Once and Future King at a Time). My parents didn't know for quite awhile that Mom was expecting a baby.  She had me when se was 24 and he was 28, and went into an early menopause, so when I was almost 5 they adopted a 6 mont old baby boy.  So when I was 12, and she was being treated for an ulcer, it was a shock to learn that the ulcer had a heartbeat.  Dad was nervous about being a Dad to a baby again at 40 and joked that he would have to play catch while leaning on a walker. Then when he was born a week before halloween, there were complications from a blood condition similar to the Rh factor (ABO incompatibility) which had caused me to need a complete transfusion 12 years earlier, and he had to be airlifted to a city 100 miles away for a week stay under a light in a NICU.

My Mom came home to the empty crib and there were tears that hadn't stopped when the community health nurse arrived to try and talk them into signing their baby into the home for mentally impaired people.  "He will never sit up, he probably won't ever recognize you.  He certainly won't know you gave him up, and you have to think of what is best for your other children."

My Dad didn't anger easily, but he threw that nurse out of our home, the words she had spoken ringing in the sudden stillness, "Mongoloid Idiot."

I remember the joyful anticipation of the birth giving away to whispered conversations and tears and I overheard my Grandma say, "He'll have one tough row to hoe in his life." and I wanted to take all the pain he would suffer and hold it to me instead.  I fell in love fast with that red faced monkey baby when we got to pick him up a week later and bring him home.

He was a happy baby, laughing and constantly making eye contact and proved a social master from birth.  Then at 6 months, right when he had begun to speak, "MaMa, Ice Cream" coming already.  He got sick, and the Dr. tested his blood and told mom to give him fluids, but he stopped eating, and over the weeks she tried to force feed him, forcing baby food between his lips as he cried, and holding his jaw closed until he swallowed, tears on both their cheeks as he fought, and wasted away.  He lost half his body weight and then Mom went to yet another Dr. appt., begging the Dr. "If you don't do something, He will die."

The man who had been our family Dr. since my Mom was a child, calmly said, "Wouldn't that be the best thing for your family?"

So then he says he can save the baby, and a shot of penicillin for simple Giardia, or "Backpackers disease" cured him. But he was deaf.

An early intervention preschool in the next town over, taught sign language to Lance and gave me the first taste of the special ed. classroom that would become my career. Then when he was 5, a new surgical technique inserted tubes in his ears and drained the fluid.  First he had to be admitted to the hospital and under general anesthesia, have his ears cut off and taped to the side of his head, so they could be glued on again following surgery.  That has changed a lot since 1980.   His first sound in 4 1/2 years was when he awoke in the recovery room and heard a toilet flush on the other side of the wall.  It startled him and he began to cry, but he'd no memory of hearing himself cry and that scared him more, and Mom picked hi up and patted his back and murmured,"you will be fine, it's OK." but the patting and her voice and his screaming ad the Dr. talking all overwhelmed him like explosions of painfully loud noise.

So even 31 years later he is not fond of loud noises, but he had a really hard time for a few years, with indoor things like basketball games or concerts.

Then he was old enough for public school and they wanted to ship him out of the county to a "State School" but the Public mainstreaming law had just passed and my parents stood firm and a class was begun.  At first they had to fight for everything.  There were a few other kids who came too, and some things were good, but some discipline was things like being locked in a dark closet during lunch for refusing to pick up puzzle pieces.

And when he was 7 he was going down a slide in the backyard as our puppy jumped up to meet him at the bottom.  His arm met the puppy's claws and the flesh tore.  We rushed him to the emergency room, where the Dr. in charge strapped him to a gurney and began to stitch up the arm.  Without pain medicine.  Mom and Lance both screamed.  
The Dr. Looked at my Mom in all sincerity and assured her, "Kids like this don't feel pain.  He's just crying out of reflex."  And my sweet Mom threatened to make the Dr. feel pain if he didn't get a different Dr. in there sooner than now.

But attitudes were changing, there was a boy with Down's syndrome on a popular TV show, and mainstream activities like swim lessons, bowling, sunday school, boy scouts and school choir all introduced the town to a boy with a sense of humor, a joy in life, a passion for sports, and an uncanny ability to make people love him.  By the time Lance was 15, he started working in a work study program with WalMart and the High School, and when he graduated in 1996, just before our Dad died of cancer, he kept working 3 days a week.  And has for 18 years now.  The City of Cody has accepted him in amazing ways and he can't go out to a store or restaurant without people saying "There's Lance!  Hi, Lance" and he knows everybody.
Yesterday, he turned 36.  He's still going strong, which is a victory since we were assured he would never make it to 25.  Wrong!!  Happy Birthday to my Hero!

Tuesday, October 18, 2011

And All I Got was a Crummy T-Shirt

My ______ went to ________, and ALL I got was this Crummy T-Shirt!
Sunbonnet Sue quilt my Grandma Grace made from my Mom's childhood dresses for my crib

I have mentioned before that I come from a long line of pack-rats and one of the problems is that we are a close, and busy family with a connection maintained between extended family in many parts of the world, and the firm belief that some of the best memories might be lost, FOREVER, if we lose the physical thing that triggers the memory.
I grew up in a time when t-shirts were the normal prize for participating in something and the standard souvenir of any trip, and I have a bunch of t-shirts, of course.  My favorites, unfortunately, are the ones which become worn to shreds, the arm pits get thin and then give out, the belly picks up coffee and spaghetti stains.  The ones with no memories attached stay safely in the back of my closet.

I thought I had the perfect solution.  My maternal grandmother, Grace Slack, made beautiful quilts that I still cherish, from my dresses and her dresses and my brothers pearl snapped cowboy shirts.  I wanted to make a quilt of 18 inch t-shirt blocks with a border from old denim.

On minor issue.  I do not sew.  Oh, I can thread a needle and replace a button, but when I got into weaving, I ended up with yards of material I had to pay someone else to hem.  My bathroom curtain is still a beach towel, push-pinned to the wall.  So the squares piled up and eventually I had enough I could have sewn quilts for India, if I could have sewn.
This DQ was only open in summer, and my brother, Lance, with Down's syndrome, talked them into staying open through his Oct. 24th birthday each year.  The MTNs, are Cedar and Rattlesnake and the statue of Buffalo Bill is on Main Street.
I love the DQ because eery day of summer, my Mom, Grandma, brothers and I would go there in the afternoon and get a milkshake to take to where my grandpa sold Antlers and Jack-a-lope to tourists by the hot Yellowstone Highway
 What can I do?  I write, and I take pictures and sometimes paint.  Now, if I weave, I make tapestries.  I will never sew a quilt.  So I am sharing some of the stories behind the T-shirts.  And then the pile will be gone, well diminished anyway.
My Mother-In-Law was really sick, for 6 weeks we stayed in a travelodge in Rochester, by the Mayo Clinic and spent the days in the Hospital, thinking we'd lose her.  The one fun day, we took our sons to the Mississippi and to Cabela's to see the dioramas ad eat elk sandwiches.
I also smile because that was 2006 and we STILL have her.

We went to Disneyland when the boys were 9 and 10 and to medieval times for a chance to watch jousting and tear at chicken with our teeth and fingers and feel like royalty.  Our yellow knight was the best!

My husband is a Music Teacher, and he started a Community Children's Choir.  Both my boys were in it and the shows were awesome and I was so proud of my guys.

Being a Cody Bronc was partly torture, but also there were great moments.  I'm glad I don't have to relive those years but I am who I am, and that is partly because I survived the bad and good of high school.

Nothing was more fun than watching the Broadway version of the Lion King, but after we came home, my youngest son wanted to sleep in on a Sunday, and I made him get up and go to church.  He was 5 and made his opinion clear by stomping out to the car wearing this.

My husband taught here, I subbed in every grade level, and both boys attended.  There are a lot of good schools but Pine Grove was FAMILY!

Ahh, Keiko.  Loved the "Free Willie" Whale and spent many times standing face to face cross a glass pane, watching the gentle whale move his flipper when I moved my hand

The incredible, lion faced Golden Tamarins are the creatures which inspired my favorite characters in my novels.  

Growing up in Cody, I loved the Rodeo clowns, and this t-shirt was illustrated by my brother's Mother-in-law

My husband grew up near the Flintstones of Custer, South Dakota, and I had loved to stop there when we were on road trips, so now we still stop for a sherbet twist cone when we are in the neighborhood.  Plus, I was born, a redheaded baby girl, the season Pebbles was born, and my mom dressed me in fake leopard print too long.

I wasn't a Trek fan until I was married and it was long into re-runs, but sharing them with my husband, led to sharing AL the novels and games and finally being in a movie one day at universal studios.

Just married, 1984, we spent the summer as counselors at a wheelchair Camp outside Susanville, CA where only jeeps could haul the campers from the inner city.  Easter Seals Rocks!

We bought 14 parrots and I painted this to wear while teaching art to preschoolers.

Powell Wyoming Junior College where I met the Man I have loved these last 30 years.

Enough said!

This on-line community jump started me and led me to write both my published novels and start a couple more still "In Progress"

The best school for kindergarten in out county, I do believe, largely thanks to Mrs. LaFazio

Where I attended the second half of my college years and learned to love the coastal redwoods on spring break.

We went to Copenhagen as part of a choir tour.  It was strange to see the sun set and come back up in one smooth movement at 3 AM.  Tivoli Gardens and the City were beautiful and a couple redheads felt right at home there.

Pittsburgh!  My Dad Grew up going here on school field trips, and one of my best days ever was when it poured rain, most people went home and we rode all day, with no lines and a lot of soaked laughter.

This just says, "Home" plus my Sister-in-law was a mail carrier when it was issued.

Thyme began in a garden, the Gardening Angel

My husband loves his Tie dye and my birds
and I love him

Judy, the toy I told all my secrets too, sports a t-shirt my baby brother wore which was a gift from a pen-pal I had in London when he was born.

OK, that is all I am up to for now.  Nostalgia is exhausting and there is much to do in the here and now.