Kara Mia

There were even more issues than this for me. On the Pediatric Unit at Maine Medical Center, most of the children are very sick. I don’t think that I ever met one child there who was merely having his tonsils out or his hernia repaired. This was not a hospital for the routine pediatric problems. This was a hospital where many of the patients were having chemotherapy for various cancers or leukemia, and these bald patients bravely wheeled their IVs up and down the halls. This was a hospital where children were recovering from traumatic brain injuries as their parents encouraged their rehabilitation. This was a hospital where children with serious heart problems were being treated. The parents of these children pushed them around the ward in their wheelchairs or wagons accompanied by oxygen tanks and tubings. Not many of the patients looked healthy and they shouldn’t, after all they were in the hospital.

But now we were going home. In the hospital, it was easier to accept Kara’s handicaps because that was the reason that she was in the hospital, but at home, she should be healthy. She was supposed to bounce down the steps telling me, “Mom, Kate and I are going to ride our bikes to Vanessa’s house.” In my heart, I wanted her to come back the way that she left the morning of April 7th. However, that wasn’t our reality and as wonderful as it was that she was coming home, it was hard to see her come home so differently from the way she left that Friday morning, walking down the street with her blue L.L. Bean backpack, blithely meeting her friends for their walk to the bus stop. My heart was breaking, but I knew that I couldn’t let it show; if I showed anything less than courage and humor and perseverance and optimism, I wouldn’t be doing my best for Kara and our family. Her recovery hinged upon Tom and Guerin and me, and we could not ever let her down.

I once saw a show on Eleanor Roosevelt who had the philosophy of not ever letting anyone see her cry. When she was sad, she would go in the bathroom and run the water loudly and cry her eyes out. I can’t tell you how many times I did this. I would take a bath and let the water and the tears flow. Our water bill must have decreased during this time because the tub was always half-filled with tears.

It was true that my life had been turned upside down in a heart-beat and I suppose that I did have reason to feel angry or bitter or jealous of people with “normal” lives. But as I analyzed my feelings, I would come to the conclusion that it wasn’t really me who had my life turned upside down, it was Kara’s life that was altered in every way. I could still tie my shoes; she could not. I could feed myself; she could not. I could walk where I wanted; she could not. I could communicate every need; she could not. And then I would look at her sweet little face that showed that she was capable of only the most innocent thoughts. And then I would think of her determination to regain her independence. And then I would look into her eyes and see the purest form of trust. It was obvious what my course of action had to be. I couldn’t dwell on the negative. I had to be able to look upon this phase of our lives in twenty years and smile and say, “Yes, I did my best.”

The main controversy that surrounded Kara’s discharge was to which facility she should be discharged. She was mobile and could walk with help, but she needed assistance with every activity of daily living, from eating to bathing to toiletting. She needed a high level of rehabilitative services which would include occupational, speech and physical therapy. She was a candidate for a residential rehabilitative facility but there is no place in the state of Maine that serves the residential pediatric rehabilitative