Chapter 1

We arrived home from St. Louis Children’s Hospital just before Christmas 1979. What a joyous Christmas that was, to have our little girl back home with us. We celebrated at Keith’s parents’ home, with his sisters and their families, and with my mother, who had moved from Florida the year before to be near us and help us with Shawna.My mother, Sonia Flynn, has a special place in this story. It was she who actually discovered the medical reference book that first described the surgery to us. She ordered it by claiming she was a nurse (which she wasn’t). It is for this reason that I credit her with saving Shawna’s life. I do not know how long it would have taken for us to learn about the surgery on our own - Shawna’s doctors never said a word about it and in fact denounced it when I showed them the book. My mother passed away in 1986, but I did tell her many times that she gave the gift of life to her granddaughter and I would forever be grateful to her.

In the springtime following Shawna’s surgery, we welcomed a baby boy into our family. Keith and I had gone through years of infertility work to get pregnant with Shawna, and after she got sick we were in no position, financially or emotionally, to go through that again, so we applied for adoption. A year later we were blessed with a two-week old blue-eyed blonde baby boy we named Gary. So while Shawna was still growing in her hair and getting her "sea legs", she was helping mom take care of her new baby brother.

Although Shawna was making wonderful progress getting healthier as the months went on, she still had some residual seizures - more of the staring and twitching variety. I recall the wrenching feeling when we saw the first twitching episode a few days into recovery. Our hearts sank, but we rallied and resolved that we could deal with a few minor seizures because Shawna was so much more alert and vibrant than before surgery. We were concerned nonetheless, when toward the end of summer the seizures seemed to grow more frequent. I was terrified that the surgery was no longer working and we would be back to the nightmare of pre-surgery days before long.

So in the autumn of 1980, we took Shawna back to St. Louis Children’s Hospital to let the pediatric neurologists there see if they could do a better job of adjusting Shawna’s meds than the Los Angeles doctors could. This was not a denigration of our pediatric neurologists at UCLA and L.A. Children’s. But this surgery was unheard of in Los Angeles at the time, so we felt the best place for Shawna was where they had experience with post-hemi kids and close proximity to the surgeon who had performed the procedure. In fact, Keith and I were making plans to move to St. Louis for good, to be near the only doctors who had ever helped our daughter. Shawna’s and my arrival back at St. Louis Children’s was a bittersweet homecoming. The doctors and nurses were both pleased and disappointed to see Shawna again. Keith flew in with baby Gary as often as he could, but for most of the time it was just Shawna and me, living in the neurology ward once again. Thankfully, Keith’s sister, Joyce, took care of Gary during the day while Keith worked. I was very worried, however, how this separation would affect Gary, who was then only five months old. The bond between mother and child was in a critical stage when I had to leave. It was a very painful decision to make, but as always, Shawna’s health loomed as a priority.

That second and final visit to St. Louis proved pivotal in several ways. It took two months, but they got Shawna’s medications adjusted to where she was able to resume her normal life with a minimum of seizure activity. By the time we left, we were down to 1 to 3 flickering or twitching episodes a day and only a few seconds in duration. We could live with that. But that lengthy stay in St. Louis proved to be a turning point in Keith’s and my marriage. We had been emotionally apart but physically together for a long time, and that long separation was the death knell.
Two months after Shawna and I returned from St. Louis, at my request Keith and I were separated and a divorce was in process. I am not proud of this, but that’s what happened. Looking back on it now, I realize I was suffering from years of emotional pain and I spent many months in therapy for the next five years.

As a single mother I had to go to work. I discovered that I really liked being out there in the business world, and I was good at it. But Shawna’s special needs still prevailed, so reluctantly in 1985 I took Keith up on his offer to take Shawna to live with him and his second wife, Kay, who was a stay-at-home mom. It was only twenty minutes away, I rationalized.

As it turned out, letting Shawna live with Keith and Kay at that point in my life was one of the best decisions I ever made. Kay was a fantastic stepmother. She taught Shawna many skills -like dressing herself - things I couldn’t seem to manage because of my emotional connection. Keith and Kay became very involved in Special Olympics and Shawna became a medal winner in track and field over and over.

Meanwhile, I had my hands full with Gary, who had just been diagnosed with attention deficit hyperactive disorder. By the time he was four, I had him in a psychiatrist’s office. When he turned six and it was time for him to start first grade, he was on Ritalin and had had a rough year in kindergarten. Again, I took Keith up on his offer to take Gary and let him start first grade near them. I am not as sure I made the right decision that time. Gary struggled with emotional and behavior issues all through grade school, and although Keith and Kay did everything they could, by the time he was twelve in 1992 Keith asked me and my new husband, Bob Edwards, to take Gary back. (More on that later).

When Shawna was 22 years old in 1996, Keith asked me if I knew of any "group homes" near where Bob and I lived in San Diego, as they had none near them in Lancaster, California. Shawna wanted desperately to be more independent by living away from her parents. So Shawna moved into Mountain Shadows Community Homes in Escondido, California, just 15 minutes from where Bob and I lived.