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

  1. I like it! Beth, when obnoxious people at cocktail parties ask me for “gore, blood, come on, what is the worst thing you’ve ever seen…” I always deflect or change the subject. If they push and dont let me alone, I say the “faces of parents who have had their world shattered.” It never fails to kill the conversation and leave people staring quietly at their drinks.

  2. OMG Beth. This struck me so strongly: “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.” As a new mom nearly 12 years ago, the newborn time was SO incredibly challenging. I loved when my son could at last talk to tell me what hurt or what was wrong. To go through what you did with Kyle telling you about the pain and you feeling helpless…I simply cannot imagine the hell and the horror.

    And like you/I have said on here before, those friends who broke through and found you when you were so scared? Those are the true lifelong friends. Those are the ones that matter. Those are the ones that make us count our blessings. Hug them close.

  3. I can’t even imagine what you and your family went through. I wish I’d known more about it, wish I’d reached out more to you. I just didn’t know, Bethie, I’m sorry. You guys were in my prayers, and I thought about you often, and I hope that helped in some small way.

    Something that really make sense to me now was something an acquaintance from church said to me after her young daughter was diagnosed with diabetes, about 2 years after my son was… She made a point to email me and apologize for not being more supportive and helpful and “there” for me, even as a very casual church-friend. She said that she had no idea, until her own daughter was diagnosed, what kind of fear we were going through, or what kind of struggle that I (as a single mother) must have been dealing with. She said, “You always handled yourself so well, Michelle, I just never imagined that it was as hard as I’m finding it to be.”

    It’s hard to let yourself be vulnerable when you feel like one tiny crack will shatter the whole damn windshield, so to speak. I didn’t expect sympathy, and I didn’t solicit sympathy, but man…I really wish I’d talked about it more, even if just for the simple fact that my church-friend might have felt like she could call me for support when her daughter was diagnosed.

  4. Andrea, Thank you! You are a mom and as you read this, I actually believe you can imagine. You have a big heart and you get it. Thank you!

    Those who broke through are true friends and the ones who held back are true friends too. They did not make the experience about them and when I could not let them in, they were ok. I probably could have been more clear. One of my very best friends and I waited almost a year to talk. Her life was hard. My life was and we simply had to get back in the space where we could both be there for each other. It is a weird weird dance. This being said, I always will be grateful for those, quiet and loud, who let me be me and loved our family no matter what.

    You are awesome Andrea. And you have been a good friend. As I come back to this blogging world, I am very grateful that you keep reaching out to me. It means the world to me.

  5. Michelle, You are right. It is so hard to let yourself be vulnerable. Each day I felt like a tiny crack would shatter up and I was on super high alert for those cracks. I, too, wish I had talked about it more then and that is why I am talking about it now. Truth be told, I could not talk about it then. I was too scared.

    When I step back, I do wish I could have expressed myseld better yet I know back then I was doing my best. I am also not pointing a finger at others (not then or now). Being hit by this weird train was new to everyone. We were all learning how to deal. Those I let in got in. Others patiently waited until they could or until I told them. Just the other day I was telling two of Dave’s Guys’ Weekend friends about a crappy day in the hospital. I am sure on a weekend away from their busy lives (and because they are dudes) the last thing they wanted was for me to get all mushy. Instead we sat in my office and they listened. They let me ramble and talk. It was a gift.

    I also know you can imagine, Michelle and I also appreciate you for saying you can’t. You have dealt with a lot of pain and sorrow in your life. You are a trooper mom and when Kyle was sick I thought of you and your son. One of the gifts of you coming into my life is I learned a bit about dealing with a lifelong illness. One really crappy days I thought of you and other strong folks I know and reminded myself that you all found a way to deal. Thank you for opening your heart to me.

  6. I can’t imagine the rollercoaster of emotion that you and your whole family went through. As a mother my heart ached for you during this battle for Kyle (as I watched on the social media sidelines). I literally get choked up trying to imagine myself in this situation. I know you do what you have to in a situation like this and that it’s the furthest thing you would choose for yourself or especially your children, from the outside it’s difficult to fathom how you did it.

    I have a hard time putting into words what I really want to say but your family and especially your children come first. They just do. Anyone who is offended by this or can’t understand that you aren’t ignoring them but that you need time to heal, isn’t a friend and isn’t worthy of your time or attention.

  7. I can relate on so many levels. – have dealt with the terroe and horror with my own daughter and now myself. I get watching the train coming and you can’t get out of the way you just close your eyes and brace for impact. I get losing friends who can’t cope with your pain and I get having those few who find a way in. But most of all I get finding it so difficult to put into words the pain of just the every day existance and how we just keep moving because we love our children in a way that is unexplainable even to just exist. Thank you because you are putting it in beautiful raw words.

  8. Sunny, I also think you can imagine. You have been through a lot and by your words, I know you get it. Thank you for aching. I needed it.

    I understand having a hard time putting things into words. How do you when it is so big? I had to let go of the offended energy. It wasn’t productive. A blessing of all of this is I learned to be ok shutting the door, you know what I mean?

    Thank You!

  9. Dawn, I know you can relate and I am grateful you took time to comment. I know you are getting through each day. I know it is so hard. You keep holding you head high and I am blown away that you do. I cannot imagine what you are going through either. You are lovely, strong, gracious and you make this world so much better. Thank you!

  10. Once again, a weepy WOW! As I think how difficult it is for me to process all this from afar, I am as always so very impressed with you and how you kept fighting for your boys.

    Thanks for sharing more of Eli’s perspective. He truly is a rock star.

  11. Thank you, Brenda! You always had our back. You knew when to step in and to step back. I love you! Eli is is such a rock star!

  12. I too read your account from the weird alternate reality of social media. I have no grasp of that depth of suffering. I hope the physical and emotional wounds continue to heal. Thank you for sharing.

  13. Love you, Beth. I’m glad you’re writing this all down and sharing it with the world. Just think of that ONE mother at her wits’ end Googling Steven-Johnsons Syndrome. I hope she finds you. xo

  14. Hi Beth found your blog tonight. My son Ethan who is 5 had Stevens Johnson syndrome at the end of January. Like your son Kyle he was so brave with an amazing pain threshold and had similar mouth,lip, tongue, throat and eye issues. I totally get what you have written. I was in the horror movie, I know the fear of thinking your child is going to die, I know what it feels like to bring a sick child home and the fear that you won’t be able to look after him. I know what it is like when everyone assumes everything is fine because your child is not in hospital anymore. Of how life will never be the same again and how it is easier to just avoid people rather to try to talk about it. Why would they get it. They have not been on this journey, they do not know now that your child still wakes screaming in the night and that you can’t get the images out of your head. I get losing friends – it hurts but somehow it also seems so insignificant now. I understand your fear for what the future is going to bring and what this illness might have in store. Thank you for writing your blog and for sharing your story and of raising awareness of this cruel illness. Hope Kyle is doing better – you should feel proud of being such a wonderful advocate for him. You write beautifully. Maybe I’m that one mother – best wishes for continued healing for all of you xx

  15. Hi Diane, Thank you for sharing your story and for your very kind feedback. I am so sorry your Ethan had to go through this terrible experience. I hope he is hanging in there, and please let him know that we are sending love his way. I am also grateful for you empathy, yet am sorry you had to experience SJS to feel it. How awful, right? Hang in there. Know I get it! Your super kind and generous validation means a lot.

    Years later I can tell you that Kyle’s immune system is still sensitive. For instance he had his tonsils removed because they became necrotic after SJS. Because his eyes are also so sensitive, he often wears sunglasses or a hat.

    Ultimately, I think we have it good. Kyle is strong and happy. His pain threshold still blows my mind. Because he cannot take NSAIDs, and because he is concerned about Narcotic withdrawal, he often muscles through headaches, tonsil removal, appendicitis… I still do not know why your son, my son, or any other child has to suffer like this. That being said, I think this very special kind of suffering has helped make Kyle the amazing person he is. And yes, I choke up as I write these words. The heartache resurfaces, yet I also feel an immense amount of love and gratitude that he is still here. My guess is that you totally understand. Thank you!

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