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A mind bender

Good grief!  Life is hard and today was a mind bender like none other!

Sam  had a full day of doctor appointments.  One was with our friendly psychiatrist.  Sam has been struggling with depression since last May.  I found that as long as we could go to the gym every night and spend an hour and a half working out, he managed to get through each day.  Since he got sick with pneumonia back in November and then one virus after the other, he hasn't been able to get his work out in and now, he isn't allowed to raise his heart rate. So, he is getting bad again.  I just wanted him to have something for all the anxiety.  He doesn't have to take it but at least we have it as a tool he can access on the really hard days.

Well, we have had this psychiatrist for about 12 years and obviously, we really like him but we haven't needed him for the past two years.  Today, we had a lot to catch up on.  He had to be made aware of the new diagnosis.  I told him Sam had Dyskeratosis Congenita.  He looked it up right away on his computer and read through what the basics of the disease is.

When he was through, he said, "Wow are sick!  You don't look sick but this is serious stuff!  How are you dealing with this."

Well...before I go any further, I need to explain a little back story on Sam.  He has a learning disability called Dyscalculia.  This means that his brain does not process time passing, patterns, numbers and his processing speed is only in the 5th percentile.

This is the strangest LD I have ever known.  He can't process information, and time is irrelevant to him.  For the most part, we have become accustomed to it and have found ways to compensate and cope.   An example of this...a couple of years ago, we were doing back to school shopping and he couldn't figure out why I was buying school supplies when he had only been on spring break, not summer break.  I tried to explain that he had three months off, not three days...He couldn't wrap his mind around that.  To him, three months felt like three days.

So, back to the appointment...this doctor starts asking about all the things that could happen and said, "Aren't you glad none of these things have happened yet?"

I said, "Well, actually a lot of them have started and that is why we are here."

From there, things got bad.  I explained the trial we are facing with Sam's ever growing heart problems and he flat out started talking about dying and how there may not be a fix for these heart issues and he could die sooner than later or at least need a new heart and lungs.

I was shocked that he was going there!  I have always presented a sugar coated front to the kids, never admitting to them exactly the seriousness of the situation.  I watched the color drain from Sam's face.  It was as if he was hearing all this for the very first time!  I knew in that instant that his brain had no recollection of going over all this last May and several times since!  

I stopped the doctor and reminded him about Sam's LD and he said, "Sam, do you understand what is happening to you?"

Nope...Sam nodded that he didn't know.  This WAS all new to him!

From there, we got in to talking about school and what to do with all this missed time and how we were going to get caught up and the stress that it is causing Sam.

He said, "Why?  Why do you care about Sam going to school?  He's trying to figure out if he is going to be alive in a week and you are worried about catching up on school work?"

"Ya!" I replied, "Life happens but we can't be swallowed up in it.  We have to continue doing the normal things kids do.  We have to maintain 'normal' and it 's normal for kids to go to school!"

"Are you hearing yourself right now?  Normal?  You want normal?  YOU DON'T GET NORMAL...ANYMORE!  That isn't a choice for your family now.  You aren't normal.  Your kids are not normal.  They will never be normal.  They have a disease that no one even knows about, they are writing history and that is not normal.  You have to change.  You can't keep doing what you've always done.  You can't do what your friends do.  You aren't living in the same world as anyone anymore.  You aren't are different.  Be different.  Sam should not have to go to school just because it's the normal thing to do.  He can't handle that right now."

Wow...I didn't want to start crying but I did.  He's right.  I just think no one else has had the guts to have this hard talk and say hard things.  It was a huge wake up call.  All I have ever wanted is normal.  I didn't want our life defined by disease that I didn't even choose.  It was put upon us so fine...put it upon us but give me the hope of normal too!

I don't want to misrepresent him, he was saying this in a very caring, concerned way.  When I cried, he gently said, "Let it go, let normal go.  Your son is in a very serious situation, you have to understand that and feel that and help him get through this but it has to be in a unique frame, not normal."

I did not think I had the strength to lift myself off his couch.  I did not want to walk out to the car and sit alone with Sam and figure out what to do with all of this.  What a mess.

Tonight, when my Wasband got in from LA, he came right over and we started all over, telling Sam all about Dyskeratosis Congenita, what is means.  We gave him the facts and possibilities.  We explained again what is happening to his heart.  We were real.  It was sad to have to tell your youngest child that his heart may not make it and he may have to start considering life in a different way.  It was sad...did I mention that?

Sam was so angry that he was hearing all this for the first time!  "Why didn't you tell me this?" He really honestly, feels that...because of his learning disability, to him this is the first time he has learned of his reality with DC. It's hard to imagine living life like that. It breaks my heart to see him so confused and genuinely angry with me for what he sees as withholding information.  It hurt so much to have to go through it all again!  It was like ripping a band aid off a very raw wound and rubbing salt in it.

But, it was good.  It was good to finally admit that this sucks!  That it isn't fair.  That it is hard.  It is hard for Sam but just as hard for Shelbie to watch Sam going through hard things like she has to.

I'm not excited for the next few weeks.  The gravity of the situation is incredible to wrap my mind around.  I've never let myself go to this place of reality before, not ever.  This is all new territory.  
I really wish someone would write a book called, "How to watch your kids die for Dummies."  I have no idea what I'm doing.

Tomorrow, I have another meeting at the school to tell them what we are going to do with Sam.  Sam has decided that he wants to try to go to school but with a lighter homework load.   He really doesn't want to miss out on being with his friends.  For Sam to be on Homebound school, and not see his friends, well, that would worse than dying.  Sounds dramatic but it's true.  So, I will present this tomorrow to the school and see where this takes us.

In the meantime...I need to figure out how to make a living in the midst of all this emotional nonsense.  I am several days behind with huge deadlines looming, important deadlines for the big hospital job in Star Valley.  Ugh...I'm just not sure how I will do it all.  I guess with a lot of praying.


  1. Oh Kathy, I can't even imagine what you are going through! ((hugs from a stranger in Utah )) You continue to inspire me every time I read your blog........ from receiving devastating, life changing news at the cardiologist to performing acts of service the next day. I would have a hard time even getting out of bed let alone shovel someone else's driveway! You make me want to be a better person. You are simply amazing!! I will keep you and your family in my prayers!


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