Susan was 44 years old, but mentally, she was just a child. Susan was born mentally retarded, not a term that is 'politically correct' in todays society. I was born seven years after Susan. That many years in part because my mother was afraid of having another child who would be handicapped. When Susan was young, the doctors told my mother to 'put her away'. My mother couldn't do that. She was her baby. During Susan's childhood, she underwent many trips to the doctors to try and correct the fact that her feet were turned in. Susan wore leg braces, special shoes, had an assortment of treatments, and still her feet were turned in. When Susan was around ten years old, they finally found out what caused her problem. Susan had Scoliosis! Her spine was just weeks from puncturing her heart. Susan had a steel rod fused to her spical cord. She laid in a hospital bed with a body cast for months recuperating. By this time, Susan and I had a younger sister. That was it, the three girls. Susan went to live at Stockley around this time. Over the years, we would see Susan several times over the year. We would bring her home for a weekend. As Susan got older, she seemed to get harder to control and she didn't enjoy being 'home' at our house. She really considered Stockley her home.

Fast forward to the late 80's. We received notice that Susan was being considered for a move to a group home. My parents did not think that Susan was capable of something like this. The initial thought was one of fear of something happening to Susan, her getting 'out' of the home, someone getting her. As it turned out, Susan going into a group home was the most remarkable thing that could have ever happened in Susan's life. Susan grew so much in the group home. She learned new words, she learned new skills. She was giving a 'job' through Easter Seals day hab program. To learn a bit about this type of programs that Easter Seals offers, click on the Easter Seal below

Susan slowly went from a larger co-ed group home to a smaller same sex apartment type of home. In the end, Susan was living with two or three other girls and they had a staff that would take care of them. The home was run by Martin Luther Group Homes. The ladies that worked with Susan and the other clients gave so much of themselves. These ladies took such care of the girls. They loved them and I know that they missed Sue so much too when she started this journey.

Christmas 2001, Susan was home a few days before Christmas and mom kept noticing that Sue was so stiff. She had a hard time bending to get into the car. (Remember, Sue had a rod in her back, she would bend with her knees or reach real hard and bend at the waist.) January 2002, I recieved a phone call that Susan had a seizure, this had happened before, but normally were not a great cause of concern. This time though, Susan fell and was unable to get back up. She was not able to walk after this. Susan was taken to Wilmington Hospital where every imaginable test was run. They could not figure out why Susan could not walk. Sue loved to walk, she would walk you tired, if you followed her around, so her staying in a hospital bed was unimaginable to us. While in the hospital, Susan developed something called C-dif, which I later learned runs rampant in hospitals. I could not figure out why we were always being told to make sure we washed after we visited with her. NO ONE told us she had an infection that could hurt her. Because Susan was mentally only a young child (toddler), when she was admitted to the hospital following her fall, she did not understand what was happening. Why was she being made to stay in bed? Why were these people coming in to look at her? Why did people just come in and leave her food on a tray? Susan could not comprehend any of this. One doctor came to see Susan (a cardiologist) who I spoke with briefly weeks later and his comment to me was "When I went to see her, she just kept yelling." Well, lets see... ask a two year old who has been in bed for weeks now who is being left alone for HOURS a day what seems to be bothering them and lets see what type of response you get. I honestly think that a sign should have been posted on Sue's door that said STOP!, I am mentally handicapped. The nurses would at times shut Sue's door to her room because she would just lay in bed and yell (just kid of moan or call out). Susan couldn't feed herself unless her food was cut up for her and she was seated upright at a table with appropriate silverware. Susan used a straw to drink. Her food would sit on a tray near her bed until someone would come in and help her eat.

I believe because Susan was always crying out that the nurses did not pay attention to her when she was truly in pain. On March 2, 2002, Susan was rushed to ICU because her white count had gone through the roof. She had an infection, her stomach was distended. They started to pump her with iv antibiotics and whatever else at that point, but by the afternoon of March 3, Susan was rushed into surgery. Susan had developed Toxic Megacolon. Initially, we were told after surgery, we were told that the doctor put in a colosomy bag, but he would be able to reconnect it in a few months (leading me to think Susan was going to be fine soon). The first couple days, they had Sue's system paralyzed so that she wouldn't fight any of the machines. I would go in each day to see her, but she would never have her eyes open. She was hooked up to a vent and every other imaginable machine. The alarms would go off and you wondered if anyone would ever come to check on her. Sue remained in the ICU for the following week. During that week, she never got any better. It was during that time that my parents started to discuss the possiblity of removing the vent. This was something that I just couldn't deal with at the time. I wanted so bad for God to provide a miracle. I had had enough heartbreak. But, as I know, God's timing is not our timing. Slowly Sue systems started to fail. They had to bring in a special bed just for her so they could turn her over, due to the vent and all the tubes coming out of her. Sue's blood pressure was falling. Her white blood count was going up higher than presurgery. It was time to talk about things that I didn't want to talk about. My parents made the ultimate decision to remove Susan's medications (those that weren't necessary) and keep her comfortable. Susan was moved from ICU to a private room where we could spend time saying goodbye. Remarkably, once Sue was off some of the medication, she opened her eyes. She heard you as soon as you walked into the room and turned to see who it was (even when she was still on the vent). On Wednesday, March 13, my parents and sister spent most of the afternoon with Susan. We said our goodbyes, telling her it was ok for her to let go. Everyone went home. I went back to the hospital that evening and sat with Susan for five more hours. She just wouldn't go to sleep and I didn't want her to be alone. She laid there awake the entire time. The room was dark. I talked to God. I called some relatives to let them know it was almost time. Yet, Sue, just hung in there. On Thursday, March 14th, we arrived at the hospital and Sue was still hanging on. It broke my mothers heart to see her this way. My parents made the most heart wrenching decision and removed Susan from the ventilator. The doctors who evaluated Sue prior to any of these decisions could not believe that Sue was still here with us. Just the fact that she made it through the week was a miracle. As soon as the ventilator was removed my parents left the hospital. I wanted my mom to remember Susan in better ways. Not in dying thoughts. As soon as my parents got on the elevator to leave, Susan's suffering ended. She waited for my mother to leave so that she did not die with my mom there. I will never forget the look on her face as she took her last breath. I sat and held her hand. I cried, but I know that she went from my arms to Jesus' arms.

I saved my emails I sent out, my prayer requests, they were more like journal entries and I'd like to share them with you if you wouldn't mind.

My Prayer Requests for Susan

I also have some beautiful poems that we shared during Susan's funeral and some that I shared with my mom afterwards.



I would like to share some photos of Susan with you, please click on her picture below





I have place a patch on the Remembrance Quilt in Susan's Memory.

Click on Sue's block to take you to quilt 7 where Sue's block is located