It was the day we took Lew to the Home of the Innocents to stay. It was the worst day of my life — but not for the reasons I expected it to be.
Everything went well that morning. We knew we had to be ready to leave when Judson got on the school bus at 8:00 a.m. and we had to be back by 4:00 when his bus returned. We left on schedule. About 25 miles down the road we developed car trouble. Our radiator gave out. It had also started to snow. We found a service station with a mechanic on duty in Frankfort and called everyone along the way in Louisville to let them know we were going to be about an hour and a half off schedule. We waited at a nearby restaurant while the car was worked on.
When we arrived at the emergency respite home, Lew was ready. We noticed Lew was twitching slightly, the way he did when his seizure medications needed to be adjusted. We bundled Lew up, thanked Wanda and took off for the nursing home.
We arrived at the nursing home at 10:35 a.m. on February 25, 1991. We had been there several days before to make arrangements and sign papers so on this day there was little to do but leave Lew. We put some of his clothes in some drawers, talked with the social worker, some of the nurses and an aide named Sheila and left. We figured we had time to eat lunch before we got back on the road toward home. We went to a Chinese restaurant on Bardstown Road. The food tasted like cardboard; there wasn’t much to talk about.
We got home at five minutes before 4:00 and collapsed on the sofa and loveseat in the living room. When Judson came in, that is where he found us. We thought we had used every ounce of energy and adrenalin at our disposal.
Five minutes later the phone rang. It was the Home of the Innocents.
“First I want you to know that Lew is okay. He is not in extremis but we wanted you to know that Lew is at the emergency room of Kosair’s Children’s Hospital.”
I thought I would die on the spot. I had never allowed Lew to be alone in a hospital. A hospital is not a safe place for a person who cannot defend himself. Now they were telling me that Lew was in a hospital I had never been in and where I knew no one. No one knew Lew.
“Don’t feel that you have to come back right now. Lew’s fine. We saw more of the breakthrough seizures that you pointed out to us. We felt that the best approach was to get Lew seen by a pediatric neurologist to get a baseline idea of where Lew is. You know Lew but we don’t and we don’t want to take any chances. You must be exhausted. Get some sleep and come tomorrow. Lew’s fine……….”
I called my friend, Cindy Salvucci, the medical social worker who had helped us so much in the past year. She gave me wonderful advice.
“Call the emergency room and ask to talk with whoever is taking care of Lew. Tell them whatever you would tell them if you were there. Later when he has a room and a room number, call and ask for the nurse’s station nearest his room and ask to talk with his nurse. Tell her whatever you would tell her if you were right there at Lew’s bedside.”
After taking this advice I felt much better. I felt more in touch, less out of control. I still didn’t think I would get much sleep.
About 7:30 p.m. the phone rang again.
To understand this part of the story you have to know that years before, when we were young married adults with no children we were members of a Sunday School class for young adults at Calvary Baptist Church in Lexington, Kentucky. The other couples in that group were the center of our social network. They were our family and spiritual friends in a place far from our families of origin. One couple in the group was Bill and Joyce Holmes. Bill was a medical school graduate and was in Lexington doing a residency in pediatric neurology at the University of Kentucky Medical Center. We all knew that when he graduated, he planned to go home to Louisville and go into private practice. It was a sad day for the rest of us when Bill and Joyce moved away. Several years later on a visit to their home, Bill and Joyce were the first people we told we were pregnant with Lew. When Lew was about four and we lived in Campbellsville, Kentucky, Bob and I took Lew to an arena assessment (where he was seen by several specialists at one time) in Louisville at Kosiar Children’s Charities and Bill was the neurologist in the group. Our paths seemed to intersect with them at many points.
That awful night when the phone rang, it was Bill.
“Cherry, I am standing beside Lew with one hand on him and one hand on the phone.
I just wanted to call and let you know how he is doing.”
I felt that the heavens opened and glory showered down. It would have been wonderful if anyone there at the hospital had called — but for it to be Bill! Bill “just happened” to be the pediatric neurologist on call that night in the ER at Kosiar Children’s Hospital.
After our conversation I was able to sleep for awhile and the next morning I went to be with Lew.