Stevens-Johnson Syndrome: Thinking your child is going to die and what that does to your head

Kyle and Stevens Johnson Syndrome

I put some sad music on. Nothing like Arvo Part’s Spiegel im Spiegel to do the trick. I am trying to find that space. I need to heal that space. Whenever I go to that space my words immediately become clunky, jumbled and paralyzed. I do not know how to say it or what to say. I keep trying. I see it. I see last year. And when I think about last year, everything I see hits me in a giant, suffocating wave. I feel like drowning and I try to push through. I am clumsy as I keep trying to tell our story. At the very least, I want generations of family to feel inspired, to feel blessed, to be grateful that their predecessor Kyle was a freaking super hero and so was Eli, his rockstar brother. I do not want our story lost. Most people know that Kyle was very very sick last year. Stevens-Johnson Syndromewas the mean ugly train that took us for a very scary and terrible ride. In bits and pieces I have awkwardly tried to tell our story. It still feels trite. I still feel awkward. Right at the moment I think about this past year or try to write about this past year, I short circuit and in my body I sense how I think I would feel if a semi-truck were barreling towards me and in my mind I see that the semi-truck is seconds from impact. Bam! Time stops. I feel that feeling you get, you know, that the terror you sense when you are watching a horror movie. You know that something bad is going to happen. You see that something bad is going to happen. You want to reach into the screen and say, “Hey, don’t open the door. Really! Please do not open the door! He has a knife. Seriously! Step away from the door!” The person cannot hear you and there is nothing you can do except cover your eyes. And before the semi comes crashing into me, I hold my breath and slam on the brakes.

Kyle and his amazingly awesome Doctor: Stevens-Johnson Syndrome

I want to get it all out.  Most people do not know that Kyle had two overlapping cases of Stevens-Johnson Syndrome. His nose took a bigger hit on the second round.  For starters, I want parents to know what it is like to sit alone in a hospital room day after day. I want them to know that they will be ok no matter what. I want people to know that they need to keep the hospital room peaceful. I was scared into peaceful and then I did not want to do anything to tip that balance. When people saw Kyle and came unglued, I asked them to leave. Even then, I was blessed with resolve. He was scared out of his mind. He heard the doctors say it was very serious. He felt their fear and confusion. The very least I could do is give him some peace. I want healthy siblings to know that we parents love them just as much as their sick and needy brother or sister. I want people to know that doctors do not know everything. Trust yourself. Trust your instinct. Even if you are a pain in the ass, do not be afraid to ask questions, change doctors, change nurses or simply speak up. I want you to know that I saved Kyle’s eyesight because I spoke up. It was that simple. I listened. I paid attention. All he needed was an over-the-counter lubricant. The nurses thought sleep was more necessary than waking Kyle up every two hours. I told them not to worry that he would not wake up. And it would not matter if he did. I insisted. I pushed. I got his eye doctor involved and the nurses pushed back. I pushed some more. Kyle’s eyeballs were shedding all of their skin. His eyeballs were scabby and raw. All he needed someone to do was open his eye and squeeze the lacri-lube lengthwise along each eyeball every two hours, then every four hours, then every six hours, every eight hours until months down the road (now) when he no longer needs it every single night. Sure, at the time, he also needed stronger eye medication, however, to prevent his eyes from completely gluing shut, all he needed was that over the counter eye lubricant. What the over-the-counter eye lubricant did was prevent his eyelids from adhering to his eyeballs. Once the adhesions glued themselves onto the cornea there could be irreversible damage. Each day the Ophthalmologist would come in with a dental-tool-like instrument, open Kyle’s eyes and scrape out the inside wherever there was a new adhesion forming. It was horrific. Kyle was so brave. The nurses resisted. They were not wrong that Kyle needed his rest. I was right. I did not want him to go blind. As parents, as advocates, that is what we need to do. We need to persevere.

Easy E sadly sits at the hospital

Every single second was a fight. It was not any easier once we were home. It was worse. It was hell; months and months of hell. I think everyone else assumed it was better. Maybe because I did not know how to tell them it was not. Kyle came home disfigured and traumatized. Eli was shell-shocked, Dave was in over his head and I was freaked out and exhausted. I could not sleep. It was like we had a newborn, a newborn that could talk and tell us how much it hurt. And this newborn was scared, emotional, distant and crazy. We spent months giving Kyle round-the-clock medication. He went back into the hospital for surgery to remove scar tissue from his tongue. Getting this surgery was another giant challenge. It was a challenge that consisted of trips to new doctors and new specialists. There was a moment where we thought about leaving that stupid, ugly growth. “Hey, at least no girl would ever want to kiss him with that thing. We can have it removed when he is twenty-one.” We joked. People assumed I was specifically avoiding their calls. What they did not realize is I was avoiding everyone’s calls. I did not know what to say.  Sometimes I worry that people are still mad at me because of how I acted the months after Kyle came home. I wanted to tell them how scared I was. I always seemed fine. I was hiding and it sucked. This being said, there were those who found a way in and for that, I will be forever grateful. Thank you for fighting for us. I want you to know about them. Those folks who quietly stood by our side, those who loved us and assured us that Kyle would look normal again. I want to tell you about the people who Kyle let in. They have changed our lives forever. Kyle went through steroid withdrawal, narcotic withdrawal, he lost his friends and I did not know how to keep mine. We made Kyle go back to school when he was not ready. He had missed so much school we thought he should try. No one realized how bad he still was. I do not know if I will ever forgive myself for sending him to school. Shortly thereafter, we had to pull him right back out. His immune system was wrecked and because it was wrecked once he was in the student population he became very ill. Looking back I know I was in shock. If I saw him now I would know how completely ill he still was. Then, I had to fight for his grades. I had to fight for him to be re-tested. He looked freakish and we had to fight. We were at the pediatrician all the time. The eye doctor saw him twice a week at first, maybe more.

This is how Kyle looked when he went back to school. We were crazy for sending him.

I cannot remember. It all sucked. It really, really sucked. Eli cried. He cried a lot. He heard other kids making fun of his brother. He never wanted Kyle to know how sad he was. Every thing made Eli think Kyle was going to die, that Kyle would have to go back to the hospital. It terrified him and then he cried some more. That was our day to day. I could not complain. At least Kyle was alive and we were all surviving. This is the beginning. There is so much more to tell.

Easy E & Kyle
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Thinking of Michelle

Kyle & Eli February 9, 2007

It was a really weird, last-minute-holiday-shopping type of day. I was buying Christmas and Kyle’s Birthday presents. With the Winter Solstice staring me in the face, it was dark early and I must admit that I let the darkness creep inside too. I was hungry, needed some sugar or caffeine and wanted to get back to Park City.

I waited and waited to make a lefthand turn out of the 33rd South Salt Lake City Red Balloon, and the holiday traffic was not letting up. Tired of waiting, I took a right instead and found myself trying to navigate a different route back to the highway.

It was really no coincidence that as I drove West down 33rd South, then made a righthand turn at 2000 East and saw La Puente Restaurant sitting there on the Northwest Corner, that I started thinking about Kyle’s pre-school friend/cousin, Sam Williams.  La Puente was the last place I saw Michelle, Sam, Ben & Ana.  Kyle & Sam are the same age and Ben & Ana were roughly the same ages Kyle and Eli are now.  Back in 2007 it was the Williams Family and their tragedy that nearly brought me back to blogging.  I have wanted to write about this, but it never felt right until now.

My Boys Today

It all began when Kyle was in pre-school.  He came home  one day, excitedly handed me an eight and a half by eleven lined sheet of paper with the name Sam and a phone number written so big the letters filled the entire sheet. “Mom. Mom. You know Sam?”

“Yes. I know Sam.”

“Guess what?”

“What, Kyle?”

“Sam says we are related and that we are cousins. Here is his phone number. We need to get together.”

Sure enough and as crazy as it may sound, Sam and Kyle are most definitely related and yes, they are second cousins, depending on which side you are coming from. A few days after Kyle brought home the phone number I saw Michelle, Sam’s mom, at Pre-School pick-up and as she stood outside with the sun glistening on her face she said, “Beth, did Kyle tell you the news?”

“I believe he did.” I replied as we both laughed.

“It is true. We are related. Beth, your mother-in-law, DeAnne, is my first cousin. Last weekend I was at Aunt Jean’s in Saint George . . .”

“I know Aunt Jean.” I excitedly interrupted and blurted out.

Michelle continued, “Well, I was at Aunt Jean’s and I asked her why she had a picture of Kyle’s parents on her piano. She told me, ‘well, that’s Davy, you know, DeAnne’s son.’ Then she told me how we are all connected, how Dave’s mom lived with my parents a long time ago and that she knew you and Dave. It is such a small world.”

“So small that sometime you find out that you are related, right?”

“Right. Sam thought it was really great and could not wait to tell Kyle.”

With this new piece of information Kyle’s friend, Sam instantly went from pre-school buddy to Kyle’s family.

Kyle & Zeke

As time and life goes, the pre-school year ended and I was not great about staying in touch.  And then one evening, as we often did with them back then, our friends Kat & Alan asked if we wanted to go out to eat.  Because we were burned out of Rubio’s and Cafe Rio, they suggested La Puente and we were on our way.  Once seated, Michelle and and I almost immediately noticed each other. She and her kids were sitting close by.  Once Kyle realized a fellow family member was sitting so close he burst out of his seat to greet them.  Then Eli, Kyle, Sam, Ana, Ben & Zeke (Kat & Alan’s son) made their way over to the “Arcade” (the entryway of the restaurant that has a few video games and gum ball machines.  Kyle and Sam quickly retold their story, proving once again even to Ana & Ben, that yes, we are related. “Sam told us about you. We are cousins, right?” Ana said making sure we all understood that she and Ben knew that we were family.  The kids had a blast. We literally had to drag them out of the restaurant with apologies that it had been so long and promises that we would see each other soon.

Shortly after that, we moved to Park City. And if you know anything about Utah, once you move to the other side of Parley’s Summit, you might as well live in Antarctica. It is strange how a half hour drive over a high mountain pass transports you into another world.

. . . Several months later found Dave, the boys and me in Hawaii for the very first time. We were there for nearly a month. Our trip magically began in Oahu and ended brilliantly in Kauai. By the end of our trip I was convinced that we would somehow find a way to move to this island paradise. The sunshine and ocean waves were the Natural Xanax I needed to conquer my seasonal Winter Blues.

Our last day arrived much to quick. We had to check out of our condo hours before our flight departed. With our bags packed, I did the one thing I always do in the morning and that is read the online news, especially the local news. I saw the initial article: Pregnant Woman and Two Children Killed in an Accident. With no other information, I needed to check the news again because somehow in the back of my mind I knew it was Michelle. I know the area well. I know the underpass the family was driving under. I knew she was pregnant. All the facts were adding up.

We had to check out of our condo and I had to wait to find out. As my boys spent their last day in paradise I knew a family back home was hurting.

Lydgate Park. Kauai.

At the same time I was reading the news the behind-the-scenes communication was happening in the Dorny family (Dorny is my mother-in-law and Michelle’s maiden name) and I received an email from my Mother-in-law with a link to an article telling us the very sad news.

I remember the weirdest things from the funeral. Dave and I were very tan. I was wearing a new Apple Green shirt I bought at Banana Republic. The line was long and I was surprised to see so many non-related people I knew. As we came closer to the caskets, we saw pictures and trinkets. The closer I came to the three caskets, the smaller I felt. My throat was tight. We stopped by Ben and Ana dressed so beautifully. We stopped and I thought about my own boys. I thought about loss. I thought about how childish I am and how short life is. We moved along until I stopped at Michelle’s casket. Of course I am crying as I write this. I was a small space in her world and I was overcome. She lay there. It was obvious that she was pregnant. I stopped and I could not move. She is a mother and she was gone. I could not stop thinking of all the times we met at pre-school. I liked her before I knew we were related. She was cool, calm and kind. I see the sun shining on her face as we talked outside the preschool. I stop and catch my breath.

I wanted to pull her up. I wanted to walk her right out of that room and tell her, “You can’t go. Not yet. Life got busy and we drifted apart. We are family.” And then it was our turn to say hello. Thank goodness. Michelle’s mom grabbed my hand, welcomed and thanked me. How can she be thanking me? And as Dave stood by Michelle’s dad it was eerie. Dave is physically a younger version of her dad. They are tall, thin and broad shouldered. Thank goodness they look so much alike because within seconds we were ushered over to the rest of the family and yes, they all look like Dave. We talked with all the aunts and then it was time to go.

And this is how they died.

On a quiet Salt Lake City Street a drunk 17 year old boy was driving alone, driving on the same road I found myself on, 2000 East. Somewhere around the I-80 underpass this boy lost control of his car. The Williams Family had no time. In a flash their life was forever changed. Almost immediately, Sam’s dad watched the last breath leave his mom’s body and in that moment he decided to forgive and then he moved forward.

Let me tell you, Kyle, Eli and I visited Sam after the accident. We knew it was not easy, yet Chris took a breath, forgave  and allowed his family to heal. I admit that on sunny days it is much easier to move forward. And on dark days, I still fight not to slip back. In my life I have been an idiot. Things that roll off will sometimes creep in. In those moments especially, I am aware that it is not always easy to heal or forgive. As I think about standing there wanting to desperately pull Michelle back into this world, I know I have to keep trying and keep healing. That is all we can do.

Then because I was not able to make a lefthand turn, I found myself turning right on 33rd South. I turned on 2000 East  right by La Puente. A few moments later I found myself driving under the same highway underpass. I was so focused on finding my way back to the highway, I was not sure how I got there until I was there. And then I thought about Michelle and healing. Seriously, it was like she was sitting right there next to me. In a drive under a dark highway underpass, I knew it was time to share my space in this. It was time to remember how grateful I am that  I met Michelle, how grateful I am that Kyle survived his ordeal, how grateful I am that I was able to have children and how grateful that somehow I am healing and the only way I heal is by forgiving and forgiving myself.  Really! Life is way too short not to heal and let go.



Because I myself, am not sure where I stand with religion, I struggled with wether I should post the following video link. I guess you can take it or leave it. This being said, I want honor the Williams family and so I am posting it. Chris tells the story of his loss and healing like no one else can. I think it is pretty cool. The message of forgiveness is amazing!

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Gunnel Starting our Sandwich Generation

(I know I said I would continue our Stevens-Johnson Syndrome Story. I have a lot already written and ready to post. It will have to wait until tomorrow).

Gunnel and Makeda August 2004

October 30, 2006.

Dave, the boys and I were in our hotel room at the Beaverton, Oregon Springhill Suites. The day before we had driven from Park City, Utah to Portland to spend Halloween with Dave’s brother, sister and their families. I will never forget what Eli said as we entered downtown Portland at the end of our long drive: “Hey Mom, I have an idea! Next time let’s take an airplane.”

My lovely sister-in-law, Dori, her husband Miah and their new baby Andrew had just stopped by to have breakfast with us. Mayhem is an understatement to what has happening in our tiny hotel room. After being trapped in the car the day before and now trapped in a tiny hotel room, the boys were ready  to break free. Kyle was six years old and Eli was four at the time, and before they and their young cousin completely fell apart, we decided we should go swimming, which really meant everyone would go swimming but me. I was looking forward to the peace.

The television was on. I could hear SpongeBob conversing with Patrick in the background as I located the swimsuits.  I was in the bathroom when I heard the ringing. I loked at the caller ID and saw that it was my super fly bestie, Marianne. I answered and our call went something like this:

“Beth, I am at my mom’s. I went over to check on her after she didn’t show up for dialysis. A police woman met me at the door. She would not let me in before she checked and made sure everything was ok.”

Because Marianne was so calm and matter of fact it seemed as though it had been a few hours instead of a few minutes since Marianne had found her mom. So I asked “Marianne, are you serious? She is dead? What happened?”

“Probably a heart attack.” Later they found that Gunnel’s heart simply stopped working, from one beat to the next, her heart was done. “Beth, she is in the other room. I don’t like it. She is on the floor and they won’t let me move her until the coroner gets here. I want to cover her. It does not seem right.”

It took me several “Whats?” and, “Are you serious?” to process that my dear Marianne was seconds away from finding her dead mother. It was confusing and surreal. I wanted to reach myself through the phone and be there with her. I wanted to fix it.

“Oh Marianne. I am coming. We are in Portland, but I will be there. I am coming. Don’t worry. I will be there.”

I remember hanging up the phone and seeing my sister-in-law, Dori’s eyes.  I could see that she knew something was up.

“Beth, what happened?”

“Gunnel died. They think she had a heart attack. Dave. Dave. We have to go.”

In shock I quickly explained to Dori who Gunnel was, probably giving more details than necessary. I told her how she was Marianne’s mom and that I had known Marianne since I was five, that Marianne was more of a sister, that I had just seen Gunnel two years earlier at the birth of Marianne’s daughter, Makeda, that Marianne was in the process of a divorce and how sad it was that Gunnel died now. Even though Gunnel had been in poor health, her death was completely unexpected. She had actually been doing better.

Then, as I seem to do when things get really bad or really sad, in a breath, I threw myself on autopilot. On autopilot, I can deal. I can tell you every little detail and even tell you how sad I am and somehow I will not shed a tear. Not because I do not want to shed a tear. I am a mother and I have children to care for. I must get us to the funeral.

We stayed in Portland through Halloween and then drove ourselves back to Park City. We were on a plane to Minneapolis six hours later. The Minneapolis Airport is a hop away from the Mall of America and as we headed to the viewing, with nothing to wear, I had Dave stop. I stood in the Mall of America Banana Republic trying on black skirts and having the sales lady tell me the shirt I chose was too tight.  In the dressing room, alone, I had I moment to let down. The sales lady pounding on my dressing room door, I say, “I am buying clothes for a funeral.”  She didn’t seem to care. I said it again. “I am buying clothes for a funeral. My best friend’s mother just died! I have nothing to wear.” I still don’t think she understood and I really wanted her to understand. We had to be at the viewing so without the sympathy I was longing for, I opted for the larger size, bought a skirt and another outfit and we were on our way. In our rental van, I put my new clothes on. Dave had already changed and we would ready the boys once we arrived.

It was a beautiful fall day and the sun really was shining just so. Perfectly the rays hit the autumn leaves as we pulled into the funeral home. As sad as I was for my friend, a gentle warmth and excitement came over me. I was home. Immediately I saw Marianne’s brothers and knew I was where I needed to be. Like a birth or a wedding, a funeral is a place to connect. I was home and I was connecting. I found Marianne and stayed close by her side. She has always protected me and even in the midst of all of this, she was making sure I was ok.

Marianne, Beth & Sara

We eventually made our way into the viewing room. It always amazes me that the body sits alone in a big chapel-like room while all the guests find their ways into the small passages of the funeral home. It was the same when Dave’s father passed last year. Marianne and I had Gunnel to ourselves. I brought the boys in with me at first. They were not sure what to do and left. Marianne and I stood there. We stood there talking about sweet Gunnel. We imitated Gunnel and Marianne’s Dad, Jack, who had passed years earlier. “Gun it Gunnel.” Jack would say as he slammed his hand on the dash whenever she was driving too slow. Gunnel had bravely moved from Sweden to the United States as a young woman. We talked about how cool and awesome that was. We talked about her cooking. She was always cooking and making so much good Swedish food. We remembered her huge, belly-rolling laughter. We talked about how she never said an unkind word about anyone, even when we wanted her to. We talked about the time before her eye surgery how she had sat so quietly at Marianne’s wedding. She was freezing and needed her sweater. Because it was dark and Gunnel could not see well, she patiently waited for someone to notice. I was glad it was me. I was glad I had noticed and had that moment with her. We laughed about how easily everyone in their family cries. Marianne told me how much she already missed her mom.

“Beth, I talked to her every single day. I do not know what I will do.”

Then I noticed. I noticed what I had been doing. The entire time we were talking I was moving my hand through Gunnel’s beautifully set, soft silver hair.

“She looks so pretty.” I said. “I hope this is ok,” referring to me touching her hair.

“Oh Beth. You know it is. It is my mom.”

Since that time I have watched Marianne long for and  miss her mom. I have seen those lonely moments and wished I could bring Gunnel back. Gunnel is not here to watch Marianne’s babies grow.  And now, somewhere in the middle of my life,  I see that I am part of the Sandwich Generation. We are raising our children while caring for and then watching our own parents die. Gunnel was the first. And since then I have seen more parents become ill and have seen more of our own babies be born. Dave’s dad passed away a year ago. And just last night another dear friend’s father died. It is such a strange place to be, right in the middle of this sandwich.

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