Stevens Johnson Syndrome Family Recovery: Tell Me How to Cry. Please.

Me & the Boys

It appears that I have lost the ability to cry. No. Really I have. Once in a while I can muster up some mist around my eyes. On occasion I can even convince a few tears to roll (albeit uncomfortably) down my face. And once in a while a kind word, or an unexpected look pushes all the tears out. Of course these unexpected tear-moments make me furious. Then, as quickly as the tears start, I demand they stop.

Earlier, as I sat in my therapist’s office (yes I go to therapy, don’t you), well, as I sat in her office with purpose I declared,

“Today I am going to cry! I need to cry! I do not know how I am going to cry, but I will. I will think of dead puppies or cute little babies, babies lost at Disneyland, that is. I will imagine sad things until one of these heartbreaking images finally dislodges my tears.  I know they will. I know they will, because I really need to weep.”

We laughed. I urged her to shout at me, humiliate me, and demand that I cry. Saying something like this, I suggested:

“Cry, Beth! Cry Now!”

We laughed. And then I came close.

Here is how it happened. I said something like this,

“I think this next story would make anyone cry.”

Just thinking about Kyle and his crazy bloodied face made my throat swell, and my heart scream. Then I talked about all the people I pissed off while Kyle was in the hospital, people who had their own version of helping and being involved. I am usually week to these sorts of offers. But because this was about Kyle, not me, I found some strength to give him what he needed, not what the helpers thought he (and really our family) should have.

“I don’t understand why they didn’t get it.” I exclaimed and continued,  “I had nothing to give. Why couldn’t anyone see that. I was doing my best to keep Kyle alive. I was doing my best to make sure he didn’t go blind. I shut the world out so I could stay afloat. Why don”t people get that?”

I still do not know why people do not get that. I was not letting anyone in. Dudes, I cannot even cry. Why would you think I could accept your help?

As often is the case while in therapy, or really, while talking, words were coming out of my mouths and I was thinking about something completely different. I was thinking about about the second time we admitted Kyle to Primary Children’s Hospital. I was talking about crying and what I was seeing is Kyle. I saw him. I see him sitting in that 3rd Floor hospital room, pleading, pleading with all of us. In my imaginings I see him in worn hospital clothes. In truth, he was wearing his own pajamas. I see him screaming.  In reality, he was screaming. Instead of tears, I felt anxious. I felt sick and I thought about how we had to change Kyle’s his room. It is strange the things that happen in the hospital. For us, we felt claustrophobic, which I am sure is not completely uncommon. Consequently, the first room they assigned us to was way too small. Kyle and I were breathless and overwhelmed. I am certain there is a good argument about Feng Shui somewhere in there. Thankfully, the nurses were nice. They knew how devastated Kyle was to be back and moved us to a different room. Thank God they did.
We were no more than five minutes into our new room when Kyle stood in the center. Emphatic, he began screaming:

“I DO NOT WANT TO BE HERE! PLEASE! PLEASE GET ME OUT OF HERE!”

Yes. It was too much. The vision of Kyle scabby-faced and powerless was enough to send me back to the moment I was in now — back in my therapist’s office. Safely away from that moment, I took a breath and watched as Kyle walked away from the center of his new room over to the windowsill. He climbed up onto the windowsill, turning his body away whimpered,

 “PLEASE MOM! DAD! PLEASE TAKE ME HOME! PLEASE!”

Kyle had been sick for so long. I was so sad for my boy. I was mad. I was exhausted.  Like a runaway train, helplessly, Dave and I stood there watching. We watched as our boy completely unraveled.  Thank God for angels. Because as we stood all dear-in-headlights like, our former neighbor happened to walk. Lo and behold she is in charge of Patient Relations.

“PLEASE.” I asked her. “I don’t know what to do. He is losing his mind. He feels so trapped and helpless. He is mad. He is not getting better. We had to bring him back for a new treatment. He is depressed. He does not believe it will work. He does not trust us.”

I do not know why she was there, but she was. It was around 7:00PM. We delayed, I mean fought, bringing Kyle back to the hospital. We did not want to put Kyle through any more unnecessary treatments.

“Can you come talk to him?” I asked her.

“Sure.” She came in the room and tried.

“Please. Please let me go home! Why? Why do I have to be here?” Kyle pleaded in choked and heaving sobs.

I knew it. I knew how he was feeling: Powerless. Your life, your every breath is in someone else’s hands. It is black, breathless and sad. Kyle was suffocating and so were we.

“Kyle, I know it is not fun, but you have to be here. You have to be here to get better. Your doctor needs you here. She needs to make sure you are ok.” She said.

Kyle screamed and cried out, “WHY DIDN’T YOU MAKE ME BETTER THE FIRST TIME? I WANT TO GO HOME! WHY? WHY DO I HAVE TO BE HERE?”

She continued, “Kyle, they want make you better.”

Now quietly pleaded, he said, “Please — please let me go home.”

“Beth, Beth, what do you want me to do? I do not know what to do.” She said.

“He is scared. He is mad and he does not understand. He feels cheated. He does not trust that he will be ok. He is not better and he is so tired of being sick.”

I walked out of Kyle’s new hospital room to catch my breath. That is what I did. She followed. My friend tracked down a hospital social worker who literally talked Kyle off of the window sill.

I felt my voice crack. I feel it crack now. Tears want to come and then I hold my breath. Now it is a habit.

My therapist talked about how locked down I am. I am.

“It is understandable, Beth. You could not let your guard down. You had to be there for Kyle, for Eli and for your family. You had to stay strong.”

“And now it is cumulative.” I said. “I think I stopped crying and unplugged after my miscarriage(s) and then we moved. Every time there is a new heartbreak, my tears grow smaller and smaller. I don’t know how to heal my broken heart. I do not know how so I take deep breath and move forward. And now, I do not know how to cry.”

So back in that room and ever so ironically, I thought about my college boyfriend. When we finally broke up, I cried for months. It was ridiculous how much I could cry.  Ask anyone who knew me then, I I could not stop. I am a little embarrassed about that time and today, I also long for that time. I long for those moments when I could cry so deeply and so freely.

As far as my tears go, I always come close.

Then I snap out of it. See, what they don’t tell you is that when you come home from the hospital like actually might get worse. It is lonely. Visitors stop coming (yes, probably because I scared them away -wink, wink). Instead, I think I need to be strong. And right now as I type this post Kyle is sick again. He is sick a lot. His immune system is so weak. I start to believe everything is ok and then he is sick. He says,

“I just want to sit here and be with you.”

What do I do with that? When will he be safe? Forget crying. When can I breathe?

This is Kyle after he was home from the hospital, the time he was supposedly better.
This is Kyle after he was home from the hospital, the time he was supposedly better.

 

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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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