Category: Stevens Johnson Syndrome

(SJS) and toxic epidermal necrolysis (TEN)[1] are two forms of a life-threatening skin condition, in which cell death causes the epidermis to separate from the dermis. The syndrome is thought to be a hypersensitivity complex that affects the skin and the mucous membranes.

Another Reason We Travel: I like to move.

by BethFamily / My Three Cents / People I know / Stevens Johnson Syndrome / Travel16 Comments on Another Reason We Travel: I like to move.
The boys in motion

I don’t know if it is hormones, onion layers or simply human nature. There is no question that I feel more resolved and more peaceful today than I ever have. And now, even in those crazy moments, I know I can talk myself off the ledge and find my way through those moments of deep despair. Yet as much as I feel healed, the more layers I peel away, the more I see how deep my wounds really are.

To the bone they go.

And as I read back on the words I have written, I read through years of patterns, patterns and cycles. I read years of hurt and I read years of hope. Somewhere along the way, I figured all of my many written and processed words would eventually heal me. I know the moment. It was during college. It was warm, sunny and I was walking north on University Avenue, really far north, way past campus, and because I did not have a car and because I liked to walk, I was walking the three miles each way to my therapist’s office. As I walked and in a warm and sunny moment, I really believed that if I worked hard enough to get to those moments, that when I arrived, magically I would be healed forever.

Not so.

Sure, I most definitely feel better. I also feel older and yes, I feel like my experiences have taught me a thing or two. I know by now that loud fidgeting done by others will always bug the crap out of me. Dave says my intense irritation is because I have this one condition where the affected cannot tolerate certain repetitive sounds. He is correct. Repetitive noises do annoy me, diagnosed condition or not. I also know that if I see a piece of cake, especially cake that I am not allergic too, I will be hard pressed not to eat the entire piece and if I do not eat it, I will think about that yummy piece of deliciousness until the moment it is gone or in the freezer. Seriously! I will.

Sadly, or maybe it is just life’s journey, I now realize that my words will repeat, my stories will change, yet will really mean the same as my feelings travel deeper, each time something or someone pulls the trigger. I know this because I believe my relationships, specifically the relationships with the family I was raised in and possibly the family I married into has a way to go before they are healed. And because these families are so much a part of who I am and who I want to be, until we heal, my words, their words, private, texted, blogged about, written or spoken out loud will ooze through the rotten flesh of our hidden sorrow. Until we learn to let go, forgive and allow ourselves to heal, we will be stuck. I believe we will feel hurt, assume the worst and see the worst until we accept the best. It’s just how it goes.

Brenda and me

Thankfully my sister, Brenda (my biological sister), and I have been taking tiny steps year after year phone call after phone call, visit after visit to arrive at this very cool place, a place where we can disagree, love, listen, and a place where I know she always has my back. Brenda believes in me. Truth be told, even when things were rocky, Brenda believed in me. She always has. Brenda knows my heart and accepts the fact that I am very different than the rest of my family (except my grandma Koener). And oddly, I am different because I have always been the one who cannot sit still. Even crazier, I really think I am the one in Dave’s family who cannot sit still either. I cannot believe how long his family can sleep, when given a chance, or how they can read for hours and hours on end. I envy their ability to be still. Sadly, my inability to sit still has caused a lot of pain and misunderstanding. It is often assumed that I would rather be anywhere else than with my family. Maybe true [wink wink], but really it is the simple fact that I need to move. As soon as stir craziness sets in during a visit to my in-laws, nothing calms my soul like a quick trip to Whole Foods. When I visit my mom, I often try to talk her into a lunchdate or to meet me at Target, where we can walk the aisles together. I like to walk. I like to hike. I like to talk. I like to move. When one sister is content to spend endless hours and days in my kitchen dicing, slicing and blending raw food after raw food, I think my head may just explode. I know my kitchen is large and if I am in my kitchen, I do not want to be there long. When family comes to visit and wants to sit and admire the beautiful aspens, I have about five minutes before I want to admire something else. It is not personal. I like to move. Thank goodness my mother-in-law likes to get out and walk too. I want to move and even from far away, Brenda (and my mom) know I am probably walking up and down our stairs as we talk. Thank God she loves me for who I happened to be.

When Kyle was in the hospital, every waking and when-I-was-supposed-to-be-sleeping millisecond was spent caring for him. Caring for him so intensely distracted selfish-me from that small, dark and very sad hospital room. There were so many moments I felt like a deer in headlights, trapped and suffocated. If it were not for my deep, extremely deep love for that boy, I would have bolted. Ask Dave. Ask my mom. Ask Brenda. They know me. They know how hard it is for me to sit still. When I am backed against a wall, I want to scream. When I am trapped in a small room, I want to claw out my eyes. When the world fights to take away my little boy, I want kick someone’s ass, I want to throw something. And after spending hour after hour, day after day, second after second in the hospital and then at home with my very sick boy, my very sad and confused boy, my boy who was tethered like a Kevlar chord to my soul, I realize that I am still not breathing.

Spinning

Sure, I am alive and I am breathing, but it has been a very long time since I breathed one of those really deep cleansing breaths. If I were to attempt a Yoga Breath, I promise you would hear me fail. After my Gallbladder surgery, the surgeon chastised me. “I hear crackling noises in your lungs. Your breaths are not deep. That is not good. You will get Pneumonia.” I do not breathe and this new, shallow, breathless healing is an added and thick, deep-fried crust to my already full and layered onion. Seriously, how many layers must one peel before they get there? And why? Why is it that once we have peeled so many of those layers, does some terrible crisis send us right back to start, back to a fresh new, layer-filled onion, Why?

On a day like today, when, for no reason, I feel mad and like I was sent back to “Start”, it seems like my healing is so far. It makes no sense.

So today, I am doing what I keep reminding my boys to do. “Boys, when you feel ripped off, mad or like life is not fair, instead of acting crabby, why don’t you feel grateful?” I really do say this and we have been talking gratitude all week long. So, thank God for Dave. Thank God he gives me space and lets me breathe. Thank God my relationship with Brenda gives me hope. My relationship with my sister makes me believe that one day my family can actually be in a room with each other and that we can be there together without the room imploding in on itself.

And right now when I need them most, thank God for old friends that become new. Thank God these same friends get it, and thank God they get it, because these same friends have experienced layers so similar to my own. Thank God for Happy Hollow Road, for giant marshmallows, kind words from Melbourne, splinter removers, flip flops in winter, Ann at Top Nails, sunshine and Summertime. Thank God for gold teeth, dream catchers, and those who care enough to save the gecko. Thank God for owls, last minute lunches at Rubios, and for every single park. Thank God for bike rides to Coldstone, gifted memberships to the Natural History Museum, Pogo Sticks, Red Butte Garden, Wawa and Harvs, and for badass young men. Thank God for summer art classes, talented architects, generous photographers, long drives, walk talks, homemade Ugly dolls and dreams of Bear Lake.

Thank God for the sisters of friends. Thank God these same sisters point me in the perfect direction. Thank God for open hearts, gardens, tree houses, homemade concoctions, buckets full of sand, beautiful paintings, and for the 1-2-3-wee-swing-you-high-in-the-air walks down Center Street. Thank God, a God I don’t even know is there, well, Thank God, I am able to move and that some of you realize that I have too.

Walking Down Center Street

Blindness

by BethFamily / Health / My Three Cents / Stevens Johnson Syndrome4 Comments on Blindness
Kyle in the hospital November 2011

Last night I found myself talking on the phone. We had been trying to get ahold of each other for a few days and I was grateful she called. I know her, but not as well as I would like. She is the sister of some very good friends and her mom helped me acquire my lovely wedding flowers years ago. The boys were finishing their homework and Dave was making himself something to eat. We had already eaten, or, so I thought. I looked over and saw both boys with spoons in hand, slurping and chomping away.

“Cereal? You already had dinner!”

“Dad said!”

Ah, the ever-popular, “Dad said.”

I cautioned them not to go overboard and left the room. As we continued talking and I kept explaining, something occurred to both of us and then she said, “Well, then it was all worth it!” Chills ran up and down my arms. I like it when these moments happen.
Continue reading “Blindness”

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

by BethHealth / mommy blogs / Stevens Johnson Syndrome19 Comments on 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

by BethFamily / Health / Stevens Johnson Syndrome19 Comments on 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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Happy Birthday Kyle!

by BethFamily / Health / Stevens Johnson Syndrome45 Comments on Happy Birthday Kyle!

Happy Birthday Kyle! We love you!

Kyle at the beginning of the 20 minute visit

Today, on his birthday, I keep trying to write a letter to Kyle. I want it to be profound. I know he knows I love him and that I always have his back. I have held on so tightly and I am just starting to let go.

I have spoken about Kyle and his battle with Stevens-Johnson Syndrome before and today I need to say more because Kyle wants me to tell you more. Now coming out the other side of our personal horror movie, Kyle wants you all to know that he is ok and not only did he survive SJS and continues to survive SJS, he has learned a lot. Just other night as I was tucking in him in, we were talking and he said, “Mom, I am really glad you write about Stevens-Johnson Syndrome. I am really happy you tell people about me. I think people should know about it. And you know what, Mom?”

“What, Kyle?”
“Do you think I will ever know anyone else who has had Stevens-Johnson Syndrome? Because I would really like to meet them.”
“I bet we can make that happen.”
“Really?”
“Absolutely!”

As I turned out his light he paused and said,

“I bet it will be a great book, Kyle.”

I shut his door and walked away, thought about where we have been and where we are now. People always say to Kyle,

“You must have something really important to do on this planet because you have been through so much.”

I never know if that is their kind way of saying,

“Dude, your life really sucks,”
or if they see what Dave and I see, one strong, resilient and amazing kid. Whatever is behind those words, I would like to think that it is true, “Kyle will do great things.”

He already has.

Kyle in the Middle of the 20 minute visit starting to crash

Nothing I have done has ever come easy and as I have mentioned, having kids was no different. For years after Kyle’s birth I suffered PTSD. (Long story I should post). The favorite part of his birth story he likes to tell people, “My HEART stopped. I was NOT breathing. They hit that BLUE hospital light. Called the resuscitation team. I was DEAD for FIVE minutes until they were able to bring me back to life.” His story is usually followed up with a, “YES, I was really DEAD for five minutes.” And then Eli says, “Mom, really? Was he really dead for five minutes?” I always come back with, “Well, he was not breathing and his heart was not beating for five minutes. You tell me.”

In those crushing moments when I am in say, a truck stop bathroom, painfully once-again miscarrying, I breathe in and think, “You are so blessed. Many people cannot have children and YOU have those two amazing boys. Remember, they saved Kyle! Get up, pull yourself together and go outside. Your boys are sitting in the car waiting for you.” That is what I do.

And now that Kyle is feeling better and back in the swing, I am starting to breathe. Because he wants me to tell you about Stevens-Johnson Syndrome battle, I think I can. What we have gone through has bound us together like some super crazy soul-strengthening polymer that you just cannot separate and not just Kyle and me, but Dave and Kyle, me and Eli and all of us. Because Kyle gave me the space to say these things, as I re-read what I have written, I think this post may be a little more for me than it is for him. Hey, but that is Kyle, sometimes misunderstood (especially when he was younger) yet you will not find a sweeter, more compassionate, more perceptive and thoughtful kid.

Just one year ago Kyle was still in Primary Children’s Hospital. After sometime he was finally able to get out of bed and leave his room. After this huge freedom had been given, each day Kyle would not-so-patiently wait for his friend to arrive. “Mom. Mom. Call him. He is not here yet. Call him.” Even on Kyle’s sickest of days, those days when his ice pack covered eyes were also covered by a blanket that was wrapped around his head and covered with a pair of sunglasses, just to make sure no light got in, well, even on those days, he always thought of his friend.

When his friend arrived, Kyle would sit up and say,

“Hey, do you want to go for a walk?”

His friend would always respond the same way,

“Yes. Whatever you want to do. Will you be ok?”

Then all of us would help Kyle get up and we would walk to the playroom. Kyle would often say,

“Mom I am so glad he can come see me. He understands and I do not feel so alone.”

Just a year prior, his friend  suffered a serious brain injury and was still not back in school full time. He and Kyle would walk and talk, his friend patiently waiting while Kyle grabbed tissues along the way and his friend did not seem to mind watching Kyle spit out all the dead Zombie-parts-looking tissue he was shedding from inside. Nor did his friend mind Kyle’s moveable IV stand, his feeding tube, red-shedding-eye-tissue-sticky-oozy eyes and all that gross and thick mucus membrane Kyle’s body was letting go. They walked and talked and for those moments, it seemed like all the things weighing Kyle down disappeared, and in those moments, I could breathe.

Once in the playroom we often had to pause and again catch our breath. We would look around and see all of the children. Many of the kids we knew would be fine, many were dying, and if they were not dying, their lives had been forever changed by some terrible accident or illness. We knew early on that we had not cornered the market on bad things that happen to you. And in the playroom there was this coming together, where all the other families understood that too.

On one of the many random days we were in the playroom Kyle and his friend wanted to play Apples to Apples. There were about ten times as many volunteers as children so Kyle and his friend asked them all if they would play. The boys also noticed a little girl in a wheelchair and asked her and her mom if they wanted to play. She seemed a little out of it. The boys (because children can just ask these things) asked and found out that she had also suffered a TBI (traumatic brain injury). It was early on and I could see the fear and confusion in her mother’s eyes. Patiently the boys waited as her mother explained things over and over again.  I ached for them:

“Her short term memory is really bad right now. They say it will get better.”

I could see her hoping those words were true. Kids aren’t dumb. All three  knew they had a long way to go. And as I sat there, I was grateful that as Kyle, his friend and this little girl asked each other the Apples to Apples questions,  their pain seemed to disappear.

After 20 minutes Kyle was done.

That is how Kyle is. Even when things completely suck, and believe me there are times still that they suck so much that I have a hard time talking about it, and people, I do not have a hard time talking about anything. Kyle is always able to manage perspective. On those dark and very painful nights when we were alone in his hospital room he would always say something like,

“Mom, thank you for being here. I don’t want to be alone. Thank you for talking to my doctors. I am so glad you are here. Mom, are you ok? Mom, it hurts so much and I am scared. Thank you for making sure I am ok.”

In those moments when I had no idea what the hell was going on or what was going to happen, Kyle always managed to appreciate the people in his life, and as you are learning, life has not been easy for him. He knows life is not always smooth and because he knows life is not easy he gets how awesome it is to have people in your life who love you and who have your back. And guess what? Kyle will always have yours.

Yesterday was Grandpa’s Day and then I fell down the stairs

by BethFamily / Health / People I know / Stevens Johnson Syndrome11 Comments on Yesterday was Grandpa’s Day and then I fell down the stairs
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Yesterday was Grandpa’s Day and then I fell down the stairs

  • Kyle

  • Me

Yesterday before I went plummeting down the stairs I had what I thought was a beautiful post started about Darryl, Dave’s Dad.  Darryl’s funeral and birthday were both a year ago yesterday (December 1).  Happy Birthday Grandpa! I had lovely things to say and had been thinking about them on my way to and from the school to pick up Eli.  Eli and I walked into the house as I was walking up our stairs, I tripped, consequently slipping and then dropping straight down on my left knee while facing towards the stairs. I happened to be holding a drink in my hand and in a bold effort I did what I could to save my  ice tea. You can either cheer for my brilliant save or boo for my silly attempt, because in an effort to save my drink, my left knee cap slammed right into the stair, taking the full brunt of the fall. Eli watched in horror as I screamed, “DAMN IT! (and maybe something a little stronger),” while I, stunned and immobile, continued my death grip on the ice tea.  Frantically trying to figure out what to do,  Eli ran past me and pleaded, “Mom, are you ok? I am going to call dad!”  He picked up the phone, dialed Dave’s number and as I stood still immobile I heard Eli say, “Dad! Dad! You need to come home now! Mom is hurt!” In that moment, my extreme pride completely overrode the intense pain. Go Eli!

Somehow and quickly I pulled myself together. Eli took the drink from my clutches and helped me up the stairs. I thought I would be fine. I am not fine.  Turns out 24 hours later and lots and lots of and knee pain and  RICE  (rest, ice, compression & elevation), I have decided to suck it up and  have it checked. Moments from now I will do just that. I will keep you posted.

In the meantime I really want to finish what I started before that whole fall-down-the-stairs-landing-on-my-knee-cap-and-not-dropping-my-drink thing happened. . .

Yesterday, on the one year anniversary of his funeral, I had Grandpa on my mind.   See, earlier in the day I met a friend for lunch.  I was not in the mood for lunch and because this is a friend I am just getting to know, I was not sure how to cancel. Dave encouraged me to suck it up so I went.  Once there, we ordered. In line my friend asked so I explained my crazy food allergies, then the Cafe Rio guys did their usual and hilarious comeback to my request for “no cheese,” and all shouted, “Extra cheese,”  she paid, we filled up our drinks (foreshadowing to my knee injury) and we sat down.  As conversations often do, one topic led to another and then I found myself crying, which I rarely do these days, right in the middle of the Park City Cafe Rio.  As I told my friend about December 1, 2010, I filled with buckets of love for Grandpa and then I thought about Kyle.

Dave’s dad had been in poor health for years.  When Kyle  was first diagnosed with Stevens-Johnson Syndrome, Darryl was on his last legs.  It was around Thanksgiving 2010. Kyle had been in then out and then back in the hospital for the past month.   Dave’s brother, Uncle Denny, was staying in Maryland with Grandpa while Dave’s mom was away visiting her ailing sister. As weak as Grandpa was, he was also very aware and very concerned about Kyle.  During his two stays at Primary Children’s Hospital, Kyle often mentioned Grandpa and would say things like, “Mom, you know I was thinking. Grandpa really understands what I am going through. I think I am starting to understand what he is going through too. I feel sad that he is so sick. I remember playing games with Grandpa. Being sick is not fun.”

During our long days and even longer nights, Grandpa easily became Kyle’s long distant and most comforting Teddy Bear. Just knowing that Grandpa understood helped Kyle feel like he was not alone.  At the end of our frequent Grandpa conversations, Kyle  would often say a simple, “I love you Grandpa.”

After a seemingly successful 3-day treatment of IVIG, Kyle was finally allowed to go home. We called Uncle Denny so he could share the good news with Grandpa. Just about thirty-six hours after Kyle came home, Grandpa passed away. My boys loved their Grandpa and we knew we all had to be in Washington DC.  Kyle was still very ill and so extremely fragile. The effects of his illness, the medications and the steroids, specifically, were terrible and completely changed who he was inside and out.  We thought about leaving him home, but because we were completely terrified to leave him out of our sight, we crossed our fingers and boarded a plane.

Kyle is the oldest grandson and wanted to say something at Grandpa’s funeral.  “There was not a dry eye in the chapel, ” I continued to tell my friend, “Kyle had only been out of the hospital for a week when he spoke. He wore a hat to protect his misshapen face. His eyes were still so red and he was so pale.  (He was very uncomfortable being around people and uncomfortable having his picture taken.) He was brave, tender and you could feel Kyle pulling Grandpa right into the room. The gift Kyle’s sweet, tender and vulnerable disposition gave us was that were all able to feel that sweet and tender love for Dave’s dad. And when I say people were crying, I mean, many of us, with tear soaked faces were hyperventilating. I was breathless as I watched Kyle speak. It was otherworldly” I knew my friend got it and I had to stop talking so once again, I could catch my breath.

. . .Tonight as I finally finish this post, I found Kyle’s talk.

Here is what he said:

Happy Birthday Grandpa!

 Hello.  I am Kyle Adams. I am the oldest Grandchild of Darryl and DeAnne Adams.  My family currently  lives in Park City, UT.  Today I am speaking on behalf of Grandpa’s seven grandchildren.

 Eli is my brother.  James, Thomas and Sage, belong to Denny and Jaqui and Andrew and Nathan belong to Dori and Jeremiah.

 This morning at breakfast  I reminded everyone that today is Grandpa’s Birthday. My brother Eli suggested we all sing him Happy Birthday so we did.  I am sure Grandpa was there listening.

 Just over a week ago I was released from Primary Children’s Medical Center. I have something called Stevens-Johnson Syndrome, which is where your body has a reaction usually to medication and then attacks all of its mucous membranes and sometimes skin.  I was in the hospital for a almost a month. I am still recovering.  In the hospital I was scared and I was in a lot of pain. Often when I was really struggling I would tell my mom that I know Grandpa understands how I am feeling. 

 Grandpa died less than two days after I was released from the hospital.   I think he stayed alive to know I was ok.  My Uncle Denny, who was with Grandpa before he died told my mom that Grandpa knew I had been so sick and also knew that I was getting better. I was so happy that he knew I was ok before he died.

 Often this past month when I have been sad or in a lot of pain I say prayers asking Heavenly Father to send messages to Grandpa asking him to let Grandpa know we love him and we are thinking of him.

 At breakfast this morning I asked my cousins and my brother if they had messages for grandpa or memories of him.  James told me how much he loves Grandpa and that he misses him. My brother, Eli, always being silly said, “Grandpa always made the best snacks.”  Tommy, age 3, said, “Hi Grandpa.”

 I remember going on walks with Grandpa. I remember when he took me, my brother and dad fishing. We spent most of the time catching worms, which was a blast.  I loved just hanging out with Grandpa and playing board games with him.  He was tough competitor.  I remember the last time I saw him I knew that I would probably not see him again so I gave him a lot of extra hugs. My parents tried getting me into the car because we needed to get to the airport and I just could not stop hugging Grandpa.

I love you Grandpa!