When my brother and I learned our younger sister Kimberly had Stevens Johnson Syndrome all of our lives were changed forever. I remember a good portion of the summer spent in a hospital waiting room. The sterility of the entire place had the ability to make any young child uncomfortable and when accompanied by hard plastic chairs and nothing to do a kid couldn’t help but hate it.

When we would hear that we were going to visit Kimberly in the hospital we grumbled and complained. It may have come off to others as if we didn’t want to see our baby sister but the truth was far from that. We wanted to see her more than anything. We wanted to play with her again; we wanted to teach her all the things other brothers and sisters would show to the youngest. We wanted to show her how to make mud pies and couch cushion forts, how to feed the dog crayons and how fun it is to watch toys swirl down the water park that adults called the toilet. But we couldn’t, all we could do was sit in the waiting room, it wasn’t seeing her at all. It meant sitting in the cold waiting room on plastic chairs with the smell of disinfectant and instant coffee that wafted over the entire place. That’s why we didn’t want to go “see” Kimberly. Yet our protesting was in vain because eventually we were loaded into the car and on our way.

Every once in a while they would let us visit her. The nurses would gown and glove us, in the bright yellow mass of disposable cloth, with a face mask and rubber gloves. We looked like a gaggle of ducklings marching through the burn unit doors to our sister’s room. When our march stopped we were allowed to gather around her crib, but it was more like a cage to us. Our little gowned body’s leaned against the white painted bars of Kimberly’s prison, peering over our oversized blue masks we saw our baby sister. She didn’t look like the same little girl that went into the hospital. Tubing was weaved from the IV pole down the bed to her arm and there was tubes down her nose and she was covered in horrible red blisters and wrapped in gauze like a little mummy. We had a difficult time looking at her; it was hard for us to understand what was happening to our baby sister. We were told she had a bad cold so our mother gave her some medicine, the medicine that the doctor said would make her better; but it didn’t.

When we saw Kimberly we were in a state of shock, we didn’t believe that that was her. She lay against the bright white sheets that covered the mattress which contrasted against the red blotchy burns and blisters that covered every inch of her. When my brother Matt and I saw her like this we were scared; as young children the sight was terrifying, the blood and the blisters made her look like she was from a horror movie, But she was our baby sister! We were ashamed that we were frightened of her but we couldn’t help it. We didn’t want to look at her when we visited anymore and our parents were frustrated by our lack of cooperation. We cried every time they wanted us to visit her. They eventually left us at home. We were afraid to look at her because she looked scary. Our parents had taught us to never judge a book by its cover, but when our little sister looked like a nightmare to us we didn’t know what to do. My brother and I eventually stopped going to see Kimberly while she was in the burn unit. The tubing the gauze and the burns became too much for us to handle so we stayed at home with relatives or friends of our parents.

Our babysitters always treated us well, they let us play and made us snacks and when it was a school day whomever was in charge of us that day would always get us out the door to the school bus on time. But we started to miss our parents, they would call to check in on us and would come home some nights if our sister was doing well but it seemed as though our parents wished they were at the hospital with Kimberly on the nights they did come home. Our once tight knit family was becoming very distant and lonely. Matt and I missed our parents, eventually we started fighting with our sitters and acting up in school. Our parents would find out and tell us how disappointed they were with our behavior and that they expected us to act “grown up” while our little sister was sick. The disappointment we felt from our parents was devastating to us, all we wanted to do was to make our parents proud and now they called to say we were grounded or to reprimand us. We started to resent Kimberly because of all the attention she got from our parents, we felt forgotten.

While our parents stayed at the hospital with our sister their lives seemed to stop and stand still in time while waiting for her to get better, but Matt and mine went on. School plays were performed and only grandma was there to cheer us on. Science projects were still made but only aunts were there to share in the winning of the blue ribbon and holidays passed but our parents had to decide which children to spend them with and if they happened to choose Matt and I, it was never both of our parents together. They were always on the phone with one another to check on Kimberly.

We started feeling lost, like our parents had forgotten us because we weren’t sick like our sister. Eventually Kimberly started to get better, slowly our parents started to come home more often, and when they were home it was like they were back to normal. For the first time in a while we were able to do something as simple as eating dinner together, we were feeling like a family again.

Finally our little sister was able to come home, Matt and I made a welcome home banner and cards, we found all her favorite toys and sprawled them across the living room floor. We were so excited for her arrival, we waited by the front door our noses pressed against the cool glass leaving foggy outlines of our little faces on the pane. We waited for what seemed like an eternity, we kept asking grandma when they would be here and she replied with the same answer every time soon. We finally saw the glow of the headlights turn around our street corner, breaking through the rapidly darkening November evening. Finally they were here, they pulled the minivan into the driveway and we jumped from our smeared waiting places at the door. We stood at the entry way and waited for Mom and Dad to come inside with our sister. All of us were eagerly awaiting her arrival. The doctors said she was better; they told us she could finally come home and be a part of our family again. Finally our parents walked through the smudged and sticky fingerprinted door to our house, carrying a lump in a blanket that we associated as our baby sister. They walked passed our beaming faces, over the mountains of baby toys and construction paper cards to the couch where they showed us our sister for the first time since we stopped going to the hospital weeks and weeks ago. They pulled the blanket off of Kimberly as we shuffled to find a spot so that we could see the big reveal; we eagerly waited to see our sister who was supposed to be better.

When our parents un-wad the mass of blankets encircling her, Kimberly was still red and sore looking, her skin spotted with red and her face was only slightly better looking than last time. The tube was still in her nose and we were told that is how she eats. We were shocked expecting her to look like she used to before she went to the hospital. They told us she could go home, that she was all better but she was far from better. My brother and I sat quietly and wide eyed at the sight of our little sister as our parents explained to us what her needs now are. They said she’s going to be eating through a feeding tube in her nose and that she has vision loss and won’t be able to see like we do and that she may need to travel with a cane when she’s older to help her get around. They also told us she won’t be able to play with us right away because she’ll still need time to heal. After the overload of information was given to us our parents went upstairs to put our Kimberly in her crib while Matt and I remained on the couch, in a daze. We expected her to come home perfectly fine but she was still sick. We couldn’t understand she wouldn’t be able to see very much at all, she’s only a baby we couldn’t see the all the ramifications of her SJS just yet.

With Kimberly finally home and our parents trying to maintain as normal a life as they could we went on living. Our family celebrated birthdays and holidays we went on vacations and were finally happy but the fact that our little sister had SJS was always there. We had to adapt activities we were going to do for Kimberly because of her resulting disabilities but we were happy to do that , we wanted her to be involved because we loved her but there were times that we didn’t feel included when she had certain activities and events going on for her. Local news reporters came to document her story for the paper because the reaction was deemed as rare, but during the interviews it was as if we didn’t exist. We were upset and maybe even jealous of our sister, even though we knew what she had gone through with SJS. We felt left out when other people would send her gifts because she had SJS and they felt she deserved them, and she did but we were still left out.

Eventually we got used to the gifts and interviews and travel opportunities she was our family’s mini celebrity and our parents would tell her how proud they were of her and how she was a survivor and Matt and I felt excluded. Our parents tried to include us and to tell us how special we were but we always felt different from Kimberly because of SJS. As we got older we tried to distance ourselves from the memories of Stevens Johnson Syndrome. It had affected each member of our family differently. Our parents were devastated by SJS because of what it had done to their baby, our sister was affected by the disabilities it left her with and my brother and I were affected with the loss of our parents and little sister during the ordeal.

Siblings of Stevens Johnson Syndrome patients also have to cope with SJS while their family member is living with it and after it has runs its course the children also have to deal with the jealousy and guilt that comes from the favoritism shown by others after SJS.

Although SJS symptoms only happen to one member of the family the rest of the family is left with scars from it too.