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Tell Me How to Cry. Please.

February 14, 2012 in Health, Stevens Johnson Syndrome

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 coax a few tears to roll uncomfortably down my face. Rarely, someone tries to steal the tears from me. This makes me furious. Then, as quickly as the tears start, I stop.

Earlier, as I sat in my therapist’s office (yes I go to therapy, don’t you?), as I sat in her office I said, “Today I am going to cry. I need to cry. I do not know how. I am going to talk about something, anything that will make me weep.”

We laughed. I urged her to shout at me and command me to cry. “Cry, Beth! Cry Now!” We laughed some more. I came close. Before I began my sad tale, I even stated, “I think this next story would make anyone cry.” I started talking about people I angered when Kyle was in the hospital. “I don’t understand why they didn’t get it. I had nothing to give. I shut the world out so I could stay afloat.” I still do not know why people do not get that. I was not letting anyone in.

As I continued talking I was thinking about something completely different. I was thinking about about the second time we had to admit Kyle to Primary Children’s Hospital. I saw him. I saw him sitting in that 3rd Floor hospital room, pleading, pleading with all of us. I see him in worn hospital clothes. He was really wearing his own pajamas. I thought about him screaming. I thought about how we had to change his room. The first room was small and we both felt overwhelmed. The nurses were nice. They knew us and were willing to give in.
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Thinking your child is going to die and what that does to your head

February 1, 2012 in Family, Health, Stevens Johnson Syndrome

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.

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I needed to Fix Myself

January 27, 2012 in Family, Health

I was pregnant here. You can see the beginnings of my pregnant belly. 6.17.06

Dave & Me. Thanksgiving 2011

As I crawled in bed late last night Dave, who was already in bed, said, “I read what you posted. Wow! That was a lot. That was really good. You are a good writer.”

Thinking he was talking about the post I had just written on Overweight Women, confused and perplexed I said, “Well, thanks, um, didn’t you edit that post earlier?”

“No. The one you posted on Facebook.” He responded.

“Oh. My Fix-You Post.” I said and because I was tired and caught of guard by his thoughtful comment, I mean, (I don’t think Dave would feel especially compassionate about the overweight woman who was smoking while carrying her catheter bag into her dialysis appointment), I continued, “I am working on my archives. That was one of the last posts I wrote  before I quit blogging and it was one of the first posts I was able to recover from the sever-back-up Vortex. It was always a favorite.  I didn’t read it today. It is too sad.”

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

December 3, 2011 in Family, Health, People I know, Stevens Johnson Syndrome

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!

 

 

Updates and Moving Forward

November 14, 2011 in Family, Health

The Boys

[UPDATE] On Friday I was freaked out. Kyle was sick again and I was sick of him being sick again. With a fever that was not letting up and after a frustrating day of Kyle seeming to get worse instead of better, history told me that we had better do something. I knew it was Friday and we did not want to wait until Monday. I was not up for a Sunday ER visit. Kyle needed to be seen or at least I think he needed to be seen. I called and spoke with my very favorite nurse at my very favorite pediatrician’s office. She is well aware of Kyle and his recent health history. “Beth, you need to bring him in before the weekend starts.”

Herein lies my current frustration, “Am I doing too much or not am I not doing enough? Is my measured approach the right measured approach?” and “Should I just wait and hope that one day Kyle is better, I mean, really healthy?”

So Friday evening Dave, the boys and I headed to Salt Lake City. It was cold, snowy and wet. Once in the SLC Dave dropped Kyle and I off at the pediatrician while he and Eli ran errands. When we were seen Kyle still felt super crappy and still had a fever yet his Quick Strep was negative. What does it mean? We really are not quite sure if this is just how it is going to be while Kyle’s immune system continues to heal or if there is a bigger underlying issue. And this is where my frustration lies, no one seems to be able to pinpoint anything when it comes to this whole Stevens-Johnson-Syndrome experience. When I don’t think it is a big deal, it is a big deal and when Kyle is simply sick like every other kid, I cannot distinguish if his being sick means more or is nothing. My brain hurts and I am trying to roll with it. It is my job to be responsible and I just want to know if I am doing it right. If I do not roll with it, I think I make Kyle’s life worse. I try to let nature do what nature does, yet my son continues to get sick.

The doctor says his tonsils look terrible although I know for a fact that tonsils can look terrible when you are sick and it could be nothing. And because Kyle continues to get sick and sick so often, we are now being referred to an ENT who will check out Kyle’s tonsils and an Immunologist. With prescriptions and referrals in hand I called Dave to ask him to come back and get us. Dave did not tell me that he and Eli were literally about to order some food when I called. Instead of eating, they came and picked up Kyle and I. Always worried about Kyle, Eli waited until he knew Kyle was ok to tell me how bummed he was that he and Dave had to come back to the doctor’s office right when they were just about to get something to eat. That was Eli’s gentle reminder that I always need to make sure Easy E is not forgotten too. Balance.

If and when we find out more, I will let you know. For now, we are trying for normal. I (really Dave) just the boys to swim team and tomorrow we celebrate Easy E’s birthday! Thank you for caring about our boy!

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