Giving

John volunteers once a week at the local high school checking IDs at the door. He enjoys being around the kids and is happy to be out in the community, making a contribution and being productive. He learned early about the joys of giving -- my Dad was a very generous man He was one of the first Presidents of MAARC -- Milford Area Association for Retarded Children. We kids helped him with mailings of newsletters, bringing our friends along to assist with the "assembly line". It truly was merrier with more -- the building used was not very well heated, so the extra bodies were appreciated in more ways than one!

I am as proud today as I was as a kid of the courage my Dad demonstrated as a pioneer in the movement to keep children with intellectual disabilities at home with their families. Life takes many unexpected turns. When my parents decided to keep John at home, they could not possibly have known that he would 30 years hence be the glue that held our family together.

Love

I try to be an open-minded person most of the time but I am acutely aware that I am a miserable failure at being opened-minded about my brother. If you meet him and don't admire him, you won't last long in my life.

Obviously, my husband of 23 years is one of John's most ardent fans. When we decided to get married, his mother asked me whether John's "condition" was inherited. The question took me by surprise as I would not have considered getting married without discussing the issue with Tag and his family had that been the case. When I mentioned this conversation to Tag I again was surprised -- stunned really -- when he told me he had wondered the same thing. He added, "Kat, it doesn't matter to me -- either way I want to marry you and I want John to be my brother-in-law". Any question I may have had about my choice of mate dissipated with that comment. As usual, John helped me to uncover the truth -- in this instance, that there isn't a finer man on the planet.

Emergency Response

I have three children and found it difficult to decide at what point each of them was ready to be left home alone. Experts recommend that you wait until the child has the judgement to cope with a problem. Using that as a yardstick, I'd say I made one wait too long and probably trusted another too early, but no one was harmed in the process, which I guess is the real goal.

The same could not be said for John, however. When he was 12 or 13, he began talking about his long term goals, which included having his own apartment and driving a car. "I don't think you can drive because you can't reach the pedals," I remarked to him whenever he mentioned his desire to drive. I was less sure about his living in an apartment, though I don't think any of us really believed he could live alone back then. After spending several years at a terrific boarding school near Boston, he made the transition to group home living, which, he soon discovered, was not the fun he initially thought it would be. As with my kids, the issue I struggled with for him when he announced his intention to live alone was whether or not he could respond adequately to an emergency. Unfortunately, we learned the answer to this question very soon after he moved into his first solo-living situation.

He loves to cook and is very serious about making himself nutritious meals that include all the basics. When we were kids, we usually had steak for dinner on Saturday night and John continued this tradition once he had a home of his own. On a cold January night, he was broiling steak in a dirty oven and set off his smoke detector. A resourceful guy, he piled several phone books onto a kitchen chair, setting a second chair next to it to use as a climbing step. When he climbed onto the pile of phonebooks, he was still several inches away from being able to reach the smoke detector. A search of his kitchen led him to the longest utensil in his drawer -- a chef's knife. He climbed back onto the climbing chair, crawled up the stack of phonebooks and reached with the knife, but found himself to be a hair away from reaching the button that would stop the horrendous noise. Standing tip-toe on the slippery pile, he reached as hard as he could. He lost his balance and tumbled to the floor, falling on top of the knife and stabbing himself in the chest just inches from his heart. The wound was deep and bled profusely, scaring him. He called my sister and me and, finding neither of us at home, called 911, then ran to the kitchen of a kindly neighbor who comforted him as they awaited the arrival of the ambulance. Eight stitches repaired the wound and he remained in the hospital overnight for observation. He bears the scar of that accident on his chest to this day. Horrible as the experience was for him, I realized soon afterwards that he could not have handled the emergency any better than he did.

And, resourceful guy that he is, he has morphed Saturday night from steak night into lasagna night. My hero, my brother John.

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?