MSI Press Blog

When the kids were little, we drove from Pittsburgh to Daytona Beach, Florida, to visit Donnie’s grandmother after Grandpa died. We spent some lovely days on the beach. Lizzie and Shane ran straight into the surf like they had been born with gills. Noelle, determined as always, figured out how to wade with her braces and crutches. (When we got home, we had to explain to the bracemaker how the ocean had “mysteriously” demolished them. He was not amused. Noelle was.) Doah, only a couple of years old, couldn’t run with the others. He still had his tracheotomy, so he and I sat in the sand building castles while Donnie supervised the older kids. It was one of the rare moments in those years when I felt relaxed — truly relaxed — because most of our time was spent in hospitals, clinics, or managing medical equipment at home. Sitting there with him, letting the sun warm us, I allowed myself to believe that everything was under control. And then the ocean reminded me that nothing is ever under ...

  In 1980, I fell down a flight of stairs. The day started out normally enough. Breakfast over, Donnie departed for work, and school lunches prepared, the kids and I were ready to take on the day, as usual. Lizzie had skipped off to her fourth grade class a few blocks from home. Three-year-old Noelle, dressed in a pretty pink dress and her blond hair tied up into two ponytails   with matching pink ribbons was tucked away in the back of our orange Pacer, where she could sit comfortably with her legs stretched out. (Those were days before the invention of seat belts.) Two-year-old Shane was seated on the outside stairs, waiting for me to bring out Doah, in his carrier, along with his suction machine for his trach tube. Doah was on the sofa, next to his suction machine. Everything and everyone in place – except that Shane needed a pair of socks. I quickly scooted down the basement stairs in search of clean socks that should have been on top of the dryer. And the, oops, I slippe...

When Noelle was ready for entry into elementary school, she was already very active with her braces and quite socially advanced. She made friends easily. Mainstreaming was just coming into popular use, and we all decided that we wanted Noelle in a regular classroom. The school agreed, then little "differences" cropped up.  "You do not have to stand for the pledge of allegiance," her teacher told her.  Yes, she did, I retorted. If everybody else stands, she stands. It meant that she had to become adept, very adept and quick, at standing up, locking her braces while standing, then unlocking them and sitting down. She managed it and was very adept the rest of the years that she wore braces at changing positions. She had to in order to fit in, and that was not a bad thing. That was commonsense. Then, the principle scarfed up an old wheelchair and placed it at the corner of the school so that she could watch everyone else playing during recess. All the handicapped childr...