Growing Pains

In the beginning, my parents' energies were focused on keeping John healthy. His head was so large and grew so fast that he was brought to the doctor's office frequently for check ups and head measurement. I recall my parents going from doctor to doctor, looking for someone who would understand and approve of their choice to keep Johnny (as we called him then) at home and who would offer them some hope that he might be okay and that our family might be okay, even though we faced a special challenge. I'm sure the growth of his head was really frightening, especially since they had no yardstick by which to measure the rate of change -- there wasn't anyone quite like him to be found in the general population! They did eventually find a terrific doctor and my mother kept careful records of Johnny's progress, both physical and intellectual -- it was slow, but it was steady and our doctor somehow had the wisdom to understand that progress, rather than meeting "age appropriate timetables" would be the goal for Johnny.

My mother made him a special headrest so she could put him down during the day without worrying that the weight of his head would break his neck. She used a block of perforated foam from which she carefully removed pieces, forming a hole into which the back of his could rest. She placed this foam into a car seat, belted Johnny in and placed the car seat on the floor where my sisters and I could explore him and play with him. He thus became our baby and we delighted in making him laugh, feeding him 'tookies' and sharing our toys with him. In retrospect, I think those early years may have been the easiest, before he experienced the pain of having his friends grow up and away from him as they matured in ways that he did not. There were many times when I watched him stand in the driveway and stare as yet another friend learned how to ride a bike and left him behind to play with other more "able" kids. True, he always had his sisters, and, eventually a family with 4 wonderful boys moved in across the street and became a permanent part of his circle of love.

Chicken Soup

John has bronchitis (again!) and, after struggling with it for several days, he made an appointment with his doctor for this morning at 10:30. He was given medication at his doctor's office and his health improved amazingly in the 8 hours since he received it. Our dear friend Michael heard that John was 'under the weather' and so stopped by his apartment with a big container of Whole Foods' fabulous chicken soup. John has a terrific circle of love around him. If life holds anything better than that for us, it is news to me!

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.