In Memory

Stuart Casey Lee

April 20, 1982 - March 6, 2000

I spent an entire afternoon reading all the websites listed for all the children on this Meningitis website. My heart goes out to each of the families. I have come to understand their pain.

I lived the past twenty years in constant protection of my children….worried about strangers, about car accidents, about drugs, but never about something as freakish as a bacteria that misses millions of people but found my son. This horrible disease took our Casey. Why? I am still in such disbelief.

I see my husband cry on a daily basis. Something I hadn’t seen in twenty-three years of marriage. The death of a child is such a sad thing. What is left of them when they go?

What is left of them to say they were here? Pictures? Videos? Memories? They are not enough, but they are all we have.

The day before Casey died keeps playing over and over in my mind. Us going through our day running errands not knowing that this would be our last day with Casey; not knowing what awaited us just hours later.

The day had been very busy. Our oldest son, Pete, was preparing to go to Miami for spring break from college. Our youngest son, Dylan, had his Boy Scouts Pinewood Derby Race that morning. My father had undergone emergency heart surgery the day before and I had been talking to my mother off and on all that day.

Casey had gone out the night before (Friday) and spent the night out. He was to be home at 10:00am on Saturday. He called us while we were at the Pinewood Derby letting us know he had made it home on time, but nobody was there to see it. We arrived home just a short time afterwards.

Casey told us he had a good time out with his friends, but his legs were sore. He said he danced too much. We kidded him a little saying we couldn’t believe at seventeen he would be sore from dancing. I gave him some Ibuprofen to ease the aching.

He stayed in his room most of the day, but we really didn’t think much about it since he had spent the night out that night before. We just assumed he hadn’t gotten much sleep and was just tired. Some friends came to the door to see Casey around 2:00 that afternoon. He went outside to talk to them and then came inside and lay across the couch and watched “Urban Cowboy” on television while I was talking on the phone with my mother.

The next few hours were spent running errands and when I got home I went upstairs to check on Casey to see if he wanted anything to eat. He said he had a headache and he wasn’t hungry. I brought him some orange juice and some tea. I checked on him again after dinner. It was dark in his room and he didn’t answer when I called his name, so I assumed he was asleep. This was around 10:00pm.

I finished cleaning the kitchen and then started trying to get a flight to my parents in two weeks. My father was going to have another surgery and I wanted to be there. I finally got off the phone with the travel agency around 1:00am. As soon as I got into bed I heard Casey calling for me. I ran upstairs.

He said his head was hurting really bad. He didn’t have a temperature. He said his legs were still hurting and his lower back was hurting too. I asked him if he had taken any more Ibuprofen and he said no. I wanted him to sit up to take the pills. He said it hurt, but he needed to take the pills.

After he sat up he started to get sick. He threw up a couple of times. I said we should go to the emergency room, but he didn’t want to go. I was afraid to leave him alone so I lay down with him. I rubbed his head for a few minutes. He said “Mom, if I feel this bad on Monday, would you stay home with me?” I said, “Sure I will, Casey”. Then I saw a tear come out of the corner of his eye. I told him I didn’t want to argue with him anymore, but we needed to go to the hospital.

I helped him get a shirt on and helped him down the stairs. His head was hurting so badly that every movement in the car was torture. He threw up again in the car a couple of times. When we got to the hospital they saw him almost immediately. It was about 1:30am.

The nurse said he looked dehydrated and said she was going to start him on fluids. She did and they took several vials of blood for tests. Its so strange, I was so in tune to Casey’s pain and wanting them to make it stop that it really didn’t register that they were doing tests to see what was causing the pain.

They gave Casey Demerol for the pain and Finagrin for the nausea. I asked how long it would take before it would help Casey’s headache. The nurse told me 10 minutes. I looked at the clock so I would know when he would feel better. He continued to throw up several times in the emergency room. I wiped his face and cleaned out the trashcan we carried with us from home. I must have repeated this six times while we waited.

The lights were off. The only light was coming from the hall. Casey said the light hurt his head. I wanted Casey to go to sleep so he wouldn’t hurt anymore. It hurt Casey’s head to talk so we didn’t. Casey was drowsy, but I knew his head still hurt because every once in awhile he would move his hand up to his head and then put it back down.

The doctor came back to tell me that Casey’s white blood count was high. He wanted to do a spinal tap to test for meningitis. I helped them get Casey into a ball. It hurt him terribly. I could hardly stand seeing him in such pain. The doctor said it looked cloudy and said he thought it was meningitis. He said he needed to do a test to see if it was viral or bacterial. They started Casey on antibiotics immediately. It was now about 4:00am.

After the doctor was gone, the nurse said she felt it was viral and we began talking about what his treatment would be. The doctor came back about an hour later saying he felt it was bacterial meningitis. I called my husband to tell him he needed to come to the hospital.

The doctor had called an infectious disease doctor and he wanted them to do a chest x-ray and a CAT scan. They did the chest x-ray and then took Casey down to do the CAT scan. I was sitting there alone in the room when I heard someone say, “Someone should tell the mother”. I knew I was the only mother in the emergency room, so I walked down the hall.

Casey had become unresponsive while they were starting the CAT Scan and they were putting a breathing tube in him in case he stopped breathing. I went over to the side of Casey and yelled his name. He opened his eyes for a moment and them closed them. I had no idea then that it would be for the last time.

The doctor became concerned that I was getting upset and asked if I wanted to leave. I didn’t want to leave. I knew I had to be quiet and still or they would make me leave. My husband, Jeff, arrived while they were finishing putting in the breathing tube. I was scared. For the next 30 minutes to an hour we talked with the infectious disease doctor.

We of course were told about the seriousness of this disease, but in his next breath he was saying that everything looked good at this point. We had gotten Casey to the hospital early, they diagnosed him quickly, they had gotten him on antibiotics quickly, his chest x-ray was clear and now his CAT scan showed no swelling. Everything was positive.

Casey was being taken up to CCU and we waited to go in. The nurse was great. She talked about what she was doing as she was doing it. She asked about what had been happening. She said Casey was breathing on his own, that the breathing machine was just going along with Casey’s normal breathing.

She said he would be in the hospital about a week. She said they would probably take the breathing tube out the next day. I remember telling the nurse that if anyone could make it through this, it was Casey. Things just always seemed to work out for Casey, with little or no effort on his part. I just knew everything was going to be okay.

Casey had so many things stuck in him. I was worried about how he would respond when he woke up. He hated doctors and hospitals. I’m not sure why. He was sick so few times in his entire life. About 1:30pm the nurse went to clean out the breathing tube.

She warned me that Casey would probably become agitated and I commented that it was a good thing they had restraints on his arms.

Casey didn’t move. She became concerned and checked his eyes. I asked her what was wrong. She said the eyes were no longer showing normal response. The doctor ordered another CAT scan.

It took them awhile to get Casey mobile and then they took him for another test. The test showed a rapid rate of swelling around Casey’s brain. They wanted to drill a hole in Casey’s skull to relieve the pressure and to monitor for swelling. They ran a blood test for clotting, but Casey’s blood would not clot, so they were not able to do the surgery.

They continued to give Casey antibiotics, fluid and also a diuretic to help reduce the collection of fluid from Casey’s brain, but they were not hopeful. They told us Casey’s brain had been without oxygen for several hours and he was already gone.

We left Casey that night around 10:30pm knowing what we would be facing the next day. That night I slept with Dylan, our eight year old. I woke up around 2:00 and it was so dark. For a single moment I thought, “maybe it was just a dream”, but then I felt my son in bed with me and I knew it wasn’t.

When we arrived at the hospital at 6:30am the next morning, they were running tests to see if there was any brain activity. There was none. Casey was gone, but he still looked so alive. His beautiful face, his rosy cheeks, he still looked so alive. We had to remove the breathing tube, but I had to wait for my mother. I had to let her say goodbye to her grandson. After she arrived and spent time with Casey, it was time to take out the breathing tube.

They wanted us all to leave, but I couldn’t. It was Monday and I promised Casey I would stay with him. I held Casey in my arms with my hand on his heart feeling his heart beating, waiting for it to stop. It took twenty-five minutes for Casey’s heart to stop beating. He was so strong.

I was not prepared for the movement and sound that would come from Casey as his heart stopped beating. It was so hard to keep holding on, but I couldn’t let go. I wanted to die too. I wanted to go with Casey.

I said goodbye to my son at 12:00 on Monday, March 6th 2000. Just hours later Jeff and I were in a funeral home picking out

his casket and walking a cemetery to pick the place where Casey would be buried. Nothing in the world can prepare you for this, nothing.

Friends and family were wonderful during this time. I’m not sure what we would have done without their support. You really do see your true friends during a time like this.

Many of Casey’s friends came to the house Monday evening to help Pete tape music for the viewing and for the funeral. I wanted Casey’s music playing for him. Casey had so many good friends. It was hard to choose eight of his friends to be his pal bearers. Pete helped me decide who to ask.

We had visitation at the funeral home Tuesday. The people at the funeral home were not prepared for so many visitors. There were almost 1,000 people who came to pay their respects. They were lined up all the way out of the funeral home. We hugged one after another continuously for almost three hours. It was overwhelming.

Friends of Casey’s, friends of his brothers, and friends and coworkers of my husband and I. All either loved Casey or felt our love for Casey. I looked into their eyes, each one feeling just a piece of what we were feeling. Parents who were there to support us and feeling so blessed they weren’t burying their child. I could see these feelings as I spoke with each one of them.

The funeral was Wednesday. His friends had gone to the river where they used to hang out and his friend Carly took the picture of all 23 of Casey’s best guy friends. They enlarged the picture and put in on a poster board to set at the funeral. It was such a gift. One of his best friends and his girlfriend of over two years each spoke. They were both so wonderful. There were twice as many people there than could fit into the chapel. Over eight hundred people attended Casey’s funeral.

After Casey’s friends carried his coffin, they all huddled together. My husband, Jeff joined them. The sight was so sad to see. I saw so much pain in their faces. Since there were so many people and the cemetery is close by, everyone just walked over to where Casey was to be buried.

Friends and family came back to the house after Casey’s funeral. I hadn’t seen some of them for awhile.
I felt very thankful they were there. We reminisced about Casey and laughed and cried. Casey hadn’t been gone very long, but I already missed him so badly I thought my heart wound just explode.

Casey was an extremely easygoing child. As a baby he would take four-hour naps. I would check on him so many times to be sure that he was okay. Casey was never in a hurry and always happy go lucky. He hated confrontation or any type of argument whether it included him or not. He wanted everyone around him to be happy all the time.

Casey was very entertaining to be around with such a playful nature. Nothing he did would surprise you. It was not beyond Casey to moon you in the kitchen as he was making his 10:00pm run at the refrigerator. He loved movies. The ones he liked, he watched over and over. He watched Friends and Seinfeld in bed every night during the week from 10:00pm to 11:00pm.

Casey was the best younger brother and older brother you could wish for. He loved both of his brothers and he loved his friends. Casey had a large group of friends that were together every weekend. I knew Casey’s friends were close, but I had no idea how close until after he was gone.

Casey was a very sweet young man, but we were not without our problems. He was the type of person who would not share his feelings. He would not talk things out. We had many situations that happened in the last year and a half where we were trying so hard to understand Casey and to get him to understand us.

Casey was the type of teenager who needed supervision in a major way. I never went to bed without Casey home. Casey would bring his girlfriend to the house and a couple of friends every once in a while, but for the most part, he didn’t want to share his friends with us.

They would all go to other houses where parents were either not there or much more lenient than we were. I’m not sure what I would do differently about that now, but what I do know is that Casey had great friends.

I have gotten to know some of them since Casey died and I wish I could have seen them together. His friends visit his grave, sit on his memorial bench and leave notes and mementos for him.

My husband and I are moved to see them. We don’t even mind the cigarette butts on the ground because it means they have been there awhile to visit with Casey. I love each and every one of them for that.

Casey loved to play the drums. He was in a band called 3R1. There were just the three of them, but they made a big sound. Casey liked the songs fast and loud. He didn’t care for the ballads. He was really very good especially when you consider what a short time he had been playing.

I knew he really wanted drums when he agreed to buy them himself. The sound of his drums in the basement would ring through the entire house. I loved the sound because I knew he was doing something he liked. One of his friends from the band, Brad, recorded songs they had done onto a CD and gave one to Jeff and I and another to Pete. We love to listen to his music and hear him playing his drums.

Casey was such an intelligent person, but he hated school. This was the source of most of our arguments. We really needed to do something to help Casey. I contacted Independence High School (an alternative high school). There Casey would work on his own with study packets on the courses he needed to graduate. All work was done in the classroom. No homework. They allowed up to three elective courses to be earned by a work program. This all sounded perfect for Casey and we enrolled him for his last semester.

This was a turning point for Casey, because he knew he could do this. He got a job working 12:30-5:30 after school at a Bagel place. He worked every day during the week and only 4-5 hours on Sunday. This was all so perfect for Casey. It allowed him his evenings and weekends to be with his friends and since he didn’t have any homework there would be no arguments with us about school.

I’m thankful that the last couple of months of Casey’s life were much easier for him. I’m happy that we weren’t arguing about school all the time. Things were much more positive around the house for all of us. I had even filled out applications for local colleges for him. I had sent the sections of each application to his doctor to fill out and then I would be sending them in.

Casey had even shown an interest in becoming a fire fighter and so I had ordered some books for him. All these things were left undone. The applications were thrown away weeks after Casey’s death. Books were returned.

Friends attended their graduation without Casey. We placed a banner on the fence at the stadium where the graduation was held. It read “CONGRATULATIONS TO ALL MY FRIENDS. I’M HERE WITH YOU. LOVE CASEY OBS”. OBS was something his group of friends made up as their membership name. Some of his friends invited us to go to the graduation, but it would have been too difficult. We worked so hard to get Casey to graduation. So many arguments and conversations, so many talks with teachers. All this to be just weeks short of graduating. It is even sadder than it would have been anyway.

We have tried very hard to do things the way Casey would have wanted since his death. I made sure that his marker was one that was Casey. There is a picture of Casey on his marker on one side and a drum set on the other side. It says his full name (even though Casey hated his first name “Stuart), the day he was born and the date he died, and it reads “Loved by so many.”

Friends and family donated money toward a memorial bench. The bench reads “CASEY LEE, OUR SON, OUR BROTHER, OUR FRIEND” on the front side, “AT PEACE IN GODS ARMS” on the back side, and “HIS SMILE WAS INTOXICATING AND WE WERE ALL ADDICTED. HE WILL LIVE IN OUR HEARTS FOREVER” on the top of the bench.

We have planted flowers around it and water them several times a week when we visit. Casey has a wind chime from his cousin with his picture in it and another we put there on his birthday. He has little statues, a pinwheel, a hat, a couple of salt shakers (he was well known for using too much salt), and a large zip lock bag to hold all the cards, pictures and notes that have been left.
Casey had a final paycheck from his work - $282.34. I wanted this since Casey had worked for it , but didn’t know what to do with the money. We decided to invite his friends to meet us where they had taken Casey the year before for his 17th birthday. About 25-30 of Casey’s friends showed up. I had a cake made with Casey’s picture on it. We met on what would have been Casey’s 18th birthday. I put candles on the cake and just meant for them all to blow them out, but they wanted to sing “Happy Birthday”. I don’t know why, but I wasn’t prepared for that and I couldn’t sing.

Afterwards we went to the cemetery. I didn’t stay long. I knew his friends would be more comfortable if they were there by themselves.

But before I left I asked them all to be sure to get vaccinated. I told them Casey would not want this to happen to them and neither would we.

Since we couldn’t give Casey a graduation present, we bought nineteen oval brass key chains. Each one had a friend’s name on one side and on the other side they all said the same thing “Casey 4/20 OBS”. I met them at the river where they used to hang out and handed them out. I think they liked them. I hope Casey would have approved. His friends meant everything to him.

Contributions were made for trees and markers at Casey’s high school for Casey and two other seniors who died this school year. These were planted in an area in the back of the school. They ordered markers to be placed by each of the trees for each senior. They plan on putting benches in the area so the kids will have a place to sit.

We miss Casey so much. We miss his joyous smile; his way of getting around things with his comedic sense of humor which was always there. We miss the sound he made as he missed the last three steps as he hit the floor running and sliding into the kitchen like he was making some kind of an entrance. I think about him all the time. He is never out of my thoughts. We are all missing a piece of our heart.

I was becoming jealous of everyone talking about their dreams of Casey. I hadn’t had one. But finally I did. It was such a short simple dream, but it meant so much to me and it was so real. I dreamed Jeff, Pete, Dylan and I had gone to dinner and we were returning home. We drove into the garage in the basement. As we were getting out of the car, I heard that sound, the sound of him missing those last few steps and hitting the floor. He came out to greet us with that big smile of his. He hugged Jeff, then Pete. He picked up Dylan and swung him around and then put him down. I met him as he was putting Dylan down and I hugged him. He was dressed in the sweat pants he was in when I took him to the hospital. He had no shirt on. When I hugged him, I could smell him and I could feel his skin. The dream ended as we entered the house. I found this dream comforting. I want to believe it was Casey’s way of saying he is here with us and he is okay with where he is.

We were unaware there was a vaccine for meningococcal meningitis. I am angry that there is not more publicity about the vaccination. I am angry that you can not even get this vaccination or information about this vaccination from your doctor or pediatrician. Are the numbers not great enough?

I have to find some reason, some good that can come from losing my son. Many people have received vaccinations since hearing of Casey’s death. Many of Casey’s friends have been vaccinated along with many people who never even met Casey. But because of Casey, they have protected themselves.

I want everyone to know. We need to put an end to this. It takes a life so quickly. Before you know what you’re dealing with, they are gone. You don’t even have a chance to tell them goodbye.

You may contact Casey's parents via e-mail at tlee@taylor.com

For additional information please visit www.musa.org and www.mpactrust.org

This is a poem written by a friend of Casey’s.

Casey

The breath of life so quickly taken,
the life of one so sweet,
Forever changing hearts and souls
of all those that he did meet…

So many words unspoken,
there is so much left to say,
if only to be graced with his presence
for one more joyful day…

His laughter was contagious,
his smile, so serene,
His zest of life poured upon
everyone and everything…

His eyes so full of warmth,
his soul was so alive
a risk-taker and adventurer,
to be unique did he always strive…

He leaves with us the memories,
of parties and fun and laughs,
And we continue with his face in mind
as we travel down our own life’s paths…

He brought so much joy and happiness
that no other will replace,
His memory will continue with us
whenever we think of that angel’s face…

Rest peacefully and happily,
our own sweet Casey Lee,
In our memories you will live forever
as we love and cherish thee…

Love always and forever, Sarah Beggs – March 6th, 2000

Casey, we miss you so much.

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