Chapter 1

My daughter Michelle was born in the year of 1972 as a twin sister to her brother John on a cold winter morning in February.

I was not there to greet her as I was on sea duty with the Marine Corps in faraway places.

The telegram I received via the Red Cross simply said, “Mother and baby’s doing fine.”

At the time, I had no idea it would be a multiple birth because even my wife was unaware of the possibility other than her doctor told her everything looked fine. There was no need to do the unnecessary looking inside providing she felt all right. It was a total shock when she delivered in the hospital. Mail was sort of slow in those days and I got off the ship to head home ready to meet one baby and not two.

I knew right away all was not in order when I saw my mother at the airport to greet me.

She told me with tearful eyes that I was the proud father of both a brand new boy and a girl baby delivered within moments of each other.

My mother whispered in my ear that the boy was “Just fine”, and the girl had a medical problem that the doctor told her needed to be investigated for a proper diagnosis. The mixture of good news and bad news was bittersweet. I was filled with a premonition of dread about the situation and didn’t quite know if I should be smiling or crying when I first saw my wife still in bed in the home out on Long Island with my In-Laws standing around with long faces.

That rainy day was the first time I heard the words, “Down Syndrome” spoken out loud and I must admit I was totally ignorant of what it meant and why my daughter would have it and her twin brother John did not. All I could see was two babies in the crib both looking normal to me and I didn’t quite understand why everybody was so upset including my wife who was constantly on the verge of tears night and day.

We talked it over and decided we would wait until we got a more in-depth medical opinion from a doctor down in North Carolina where I had my next duty station.

My mother-in-law, Mrs. Boylan came along with us to help with the babies. She was an Irish Catholic woman of the late nineteenth century. She had been through World War I and World War II and the Great Depression. She really was a godsend during that period of high stress because my wife was touch and go on an emotional rollercoaster with worries about her infant daughter Michelle.

The military base had a hospital, but for this medical review, we decided to take the advice of her former medical mentors and we went to Duke University to their medical services to get some cutting-edge answers to our questions.

The expedition to Duke University was overshadowed by a sense of doom and gloom that was partially offset by moving two infants in a station wagon with myself, my wife, and my mother-in-law. It was not that long of a trip from Jacksonville, North Carolina to the Raleigh area and the road was in good condition.

My wife and I were only married about eighteen months when the twins were born. She had the advantage of being a Registered Nurse for almost fifteen years. Of course, there was a disadvantage as well because she was far more familiar with the medical situation than I was at that time.

In retrospect, I guess I was probably a lot more optimistic about the outcomes than my wife because I tended to look on things around me as bonus living because of some close calls in Vietnam only a few short years ago.

I believe the general tone of most of advice we received at that time was to turn our daughter into social services and concentrate our attentions to our new infant son. I am including medical advice, both family’s advice and advice from the church. My wife was conflicted about that choice, but she agreed with me that we should at least give it a try and see what developed.

Looking back on it now almost fifty years later, I don’t believe either of us regretted that decision.

There are a lot of highlights to raising a Down Syndrome child that I hope readers might find interesting to gain perspective of life with our Michelle and her trials and tribulations.

The history of Down Syndrome children has been recorded for many centuries.

This small record of Michelle’s life will hopefully offer insight into the slow adaptation of acceptance into everyday society from the ground level of a caretaker for life.

From the very beginning, we were bombarded with negative attitudes from most of the professional advisors we interacted with on a daily basis. Of Course, this was in the 1970s when Down Syndrome children were generally shunted off to an institutional setting with little chance of joining the mainstream of the general populace in the United States. In retrospect, I understood that American society was probably the most progressive in the world in dealing with that challenge.

Since I am in my eighties now, my memory is not quite as sharp as it used to be, but I remember with great clarity an incident in Monterey, California when a doctor at a nearby Army hospital told me that my daughter would probably never be able to walk on her own two feet and may be confined to a wheelchair for the remainder of her life. She was able to move around the base housing unit by means of a “Jumping Jack” harness that was suspended from the ceiling and allowed her to go from room to room by hopping on her extended legs. Her twin brother John was also given one and he would speed around rapidly using the device in that period just before he was able to take his own first step.

Not being the greatest Do it yourself craftsman, I still attempted to build a walk assistance stand with rails for arm support because we couldn’t afford the actual equipment and the current day apparatus for getting medical equipment support was not prevalent at that time.

We were just beginning to get educated on the differences of institutional care, group homes, or home care situations and it all varied greatly from State to State in terms of cost and availability.

Much to my surprise, Michelle was not happy with my DIY effort and thankfully started walking on her own shortly after her twin brother John took his first steps. She imitated almost everything he did even the things we disapproved of.

When he took swimming lessons, she jumped into the water and mimicked his motions until she became a good swimmer teaching herself. I must admit I was quite proud of her for that because to see her swimming the length of the fifty foot pool was astonishing to me. It was a feat I was unable to do myself.