Lunch with My Hero

Since I didn't see John for Christmas, I flew to Providence and took him out to lunch on Sunday. As always, we chose an Italian restaurant that serves lasagna in large portions. Once he had eaten precisely half of his lasagna, he put his fork down and asked our waitress to bundle up the remaining piece so he could take it home and eat it later. An order of cheesecake to go ensured that he'd have a delightful Sunday evening meal.

Over lunch, we talked about the enjoyable Christmas visit he'd just had with our sister, Liz and he delighted in describing the frequency with which she lit matches to clear the air of fart waves. "She's going to burn herself lighting all those matches," he giggled to me.

"Farting can be dangerous," I replied agreeably.

"Don't be ridiculous," he responded. "Farting isn't dangerous -- playing with matches is dangerous".

As usual, his perspective on life was right on and left me laughing. What would I do without my dear hero, John?

Merry Merry!!!

Sadly for me, John will spend Christmas with another sister and her family. "It's only fair," he told me on the phone recently. "You have to share". Could any comment be more in keeping with the true spirit of the holiday season?

In this spirit of sharing, I offer his new favorite joke:

Q: Why are there exactly 239 beans in Irish Bean Stew?
A: Because, if there was one more, it would be 240 (too-farty).

Potty humor is one the joys of the season (make that all seasons)!

Friends

I could tell from the happy tone of his voice when he called last night that John's holiday party had gone well. On Saturday afternoon, he and eleven friends gathered at his apartment for a trim-a-tree party. John served Chinese food (which, he informed me during our call, was scrumptious), wisely keeping party preparations to a minimum. After everyone had their fill of pork fried rice, dumplings and egg rolls, they added their ornaments to his tree, which he had placed in the center of the holiday-light trimmed picture window in his living room. Proud of his new apartment, he was pleased to have an opportunity to show off his comfortable home to his friends. The party started at noon and didn't break up until after 3:00 -- I'm certain that John's assessment that a good time was had by all is accurate!

One of his guests, a beautiful woman named Terry, has been his friend since elementary school. They have a gentle, caring relationship and have always been able to make one another laugh. Childhood friends are like that.

When John was young, my Dad really worried whether he would be able to develop meaningful friendships. To ensure that he never would be lonely, my Dad worked with John to help him develop a love of reading. Although he tried with all his heart to teach John to share his love of reading, he simply did not. Daddy needn't have worried, however. John's life may not be full of books, but it is overflowing with friends.

Upward Mobility

When John was a baby, he loved watching my sisters and me play with one another and with our pets. He had a keen interest in animals from the start and we all loved going to the zoo and sharing with him the things we'd learned in school about elephants and monkeys and giraffes. Slowly, at his own pace, he increasingly engaged with the world, talking and observing life around him. He reached out physically too -- playing peek-a-boo and patty-cake with his sisters and petting the animals as they came his way. Like all little ones, eventually, he became independently mobile too. However, his head was so large and his limbs so short that he had to devise his own unique style of crawling -- on all fives -- hands, feet and head! He would zip across the room with his sisters dashing beside him, ready to redirect his path away from a table or sofa or to snatch an errant toy out of his way. When he came to the end of a rug we were at the ready with a wool doll blanket for him to use to slide across the floor to the next area rug. The blankets were often charged with static electricity and his soft blond hair stood on end when he sat up at the end of a run, making him cuter than ever.

Fun as crawling was, he wanted more and, as usual he had three exuberant teachers ready, willing and able to help him take on the next challenge -- in this case, walking! I have no recollection of how we came up with the idea of having him hold onto the handle of the big doll buggy, but if I had to guess, I'd bet it was John's idea. At first, he'd stand joyously holding onto the carriage for balance. As he became more stable and we became increasing eager for him to walk with us, we began moving the carriage as he held on. I believe he was four years old on the glorious day he took his first independent steps. Although it was unquestionably a group project, on that day, the spotlight belonged completely to him.

There were hard things too, even when John was very young. I remember vividly his being teased by the little boy next door when I was about 6 or 7 years old. I can still feel the fury that rose to my throat and that carried me away from the front yard at lightening speed and up the stairs to my bedroom to grab the perfect object with which to slap that nasty boy -- my new cosmetics case sent to me by Grandma. And yes, it delivered a very nice slap, and yes he told his mother on me and of course she shared with my mother the story of rotten me slapping her son. My mother, ever patient and wise, asked me to explain before deciding on a suitable punishment. When I told her the story, she reminded me that "we don't hit" and then, smiling quietly, she took me by the hand into the house for cookies and milk. I knew then that she was glad I slapped that rotten kid, even if she couldn't come out and say so. That was the first time I defended John's honor, but it certainly wasn't the last.

Successfulness

I think my brother is wonderful and I admire him tremendously, but that's not the reason I wanted to write about him. I have met several parents of disabled kids over the years, both informally and as a guest speaker to parent groups, and have noted that these parents share one overriding concern -- that their children will be lost, lonely or even homeless after they (the parents) have died. Sadly, both of our parents are dead. John, however, is happy and healthy and even planning a Christmas party for friends to be held Saturday night!

When he was born, he was pronounced "uneducable" and my parents were told they'd be lucky to successfully toilet train him. Today, he lives in his own apartment, does his own grocery shopping and cooking,holds a job that he really enjoys and has an enormous support group that lends him a hand when he needs one. He is comfortable with himself -- comfortable asking for help, comfortable lending a helping hand to others and able even to handle the medical emergencies he's faced. Is he an incredible success? Yes -- totally. The kid you love can be too.

No Complaints

John loves running errands with us when he visits and it's a delight to have him along. On Friday, I had my car serviced and he came with me when I returned the loaner and picked up my car. As I've been going to the same shop since 2004, many of the people we encountered know me well and I introduced them to my brother. As is customary, each of them asked him how he was doing upon meeting him. His response, every time was, "I can't complain". He lights up a lot of lives every place he goes.

Warming Up

John flew to Detroit from Providence on Tuesday to share the holiday with us. He has an extensive DVD collection that includes many 1960s TV shows and he made certain he brought with him some of my old favorites -- he and I happily spent Tuesday night watching episodes from season 3 of the Mary Tyler Moore Show. He recalled how my dear friend Colleen and I watched it together every Saturday night in high school, after I'd made her cheeseburger of course. Watching the shows with him was a total trip back in time -- he recalls every little detail from the life of every person he loves -- and there are many.

He really loves to fart while we watch together too -- apologizing before the reason for the apology becomes obvious -- and he giggles like an innocent child when I suggest we need to clear the air with the aid of a match. "Don't set my pants on fire," he'll beg in an explosion of joyous laughter. It's one of our favorite "routines" and something I look forward to each time he visits.

Wednesday, he and my husband, Tag went shopping together for the ingredients for lasagna. Onions, cheese and peppers in large amounts -- perfect for a guy who loves to fart. I believe we may have a carbon off-set problem after Wednesday night, never mind the noxious output on big day itself...

Thanksgiving Day 2009

The beginning

I have wanted to share my brother's story for a long time. He is a trailblazer, or perhaps more accurately, my parents were trailblazers in the movement to keep disabled kids at home with their families after birth. John was born in 1960, a time when almost no middle class parents kept kids like him at home. Somehow, my mother knew that his potential could only be maximized by his living at home with his parents and three sisters. And so he did. I know it was really hard for many people, but it was never hard for me. My mother, who had breast-fed her daughters, knew she needed to be able to measure the amount of nutrition he took in and so bottle-fed her son. I remember her saying it took about an hour for him to ingest an ounce of formula and that he needed 24 ounces a day. You don't need to be a rocket scientist to figure out how she spent her days in the summer and fall of 1960. Even so, I recall sharing her lap with him and her reading a book to me while she fed him. He was really cute too -- so tiny and blond with big, soft brown eyes and so clean smelling -- like corn starch.

He was born about a month early and I've been told it was a very difficult birth for my mother. There were no sonograms in 1960, so no one knew in advance that he had a very large head, even for an achondroplasiac dwarf. Despite the best efforts of the doctors, his brain was damaged during birth, leaving him mentally retarded. Family members recommended that John be institutionalized for the 'good' of my sisters and me, but my mother was resolute and home he stayed. My strong, prim and proper Grandmother was horrified by her daughter's renegade decision, but helped her anyway. She stayed with us for an extended period after John's birth, running the household for my parents and eventually hiring help so we could manage after she returned to her home in Minnesota. She seemed rather cold when we were kids, but now I know what a great lady she really was --I admire her for having had the courage to put her feelings aside and help her daughter when she needed her most.

No Sorrow

My job has been very challenging of late. Not so much the work -- more the people. It is difficult to accept that some of them are not the decent people I thought they were.

So, I come home and call my brother, John. We don't talk about work, at least not mine. We talk about real stuff -- like what he had for dinner and which 1960s-era TV show he's going to watch on DVD tonight. He always asks about each member of my family--even the pets--and he genuinely cares about what we had for dinner tonight, yeah--even the dog. We talk about how much he likes to work and whether he packed more boxes today than yesterday and what he brought for lunch. We always cover the important matters--his success at work, food, TV, weather and his favorite topic, farting. Real stuff about which we have real laughs. There is no room for tears when you speak with John. He laughs too much; enjoys life too much. He keeps me on course and happy. My hero. My brother, John.