Sunday, May 31, 2015

Life with Dyskeratosis Congenita

School's out and Sam couldn't be happier.

Tomorrow he leaves with 20 of his closest friends on a little trip up to Yellowstone!  He is more than excited and I'm excited for him.

I've been really impressed with his friends.  The girls who planned this party are twins.  What made me so impressed was how organized they have been.  They created the guest list then called a 'meeting' at their house to discuss the 3 day trip.  They had itineraries printed up and each day planned with activities that ranged from sightseeing in Yellowstone, to boating, playing at the beach, games, bon fires, hiking etc.  The family has a couple of cabins just a little ways from Yellowstone so the girls will be in one cabin and the boys in another.

They also split the kids up and each group is in charge of bringing and preparing food for all 20 people so every meal is covered by the kids themselves.  The parents will be there supervising but mostly the kids have been given responsibilities and expectations to be well behaved.  It's an awesome group so I'm sure it will be fun!  I wish I was going!

I asked Sam if he thought I should call the mom of the party planners to let her know that he has some health conditions and make sure she has my number.  I'm not too sure what is going to happen with Sam's faulty lungs being up in that elevation and hiking 10 miles. He said, "I think that's a good idea."

I was surprised because he always says I worry too much.

So, tonight, I made the call.  If that wasn't awkward!  I don't even know this family.  I know of them but we aren't besties or anything.  I wasn't quite sure how to start the conversation without making the situation sound dire.  I think it went something like this...

" Hi, I just wanted to let you know that Sam has some little health issues that won't be a problem but just thought an adult should be aware on the off chance something comes up."
"That's good to know.  We have some kids with asthma who won't be participating in some of the activities and another kid who's leg hurts sometimes so they will be staying back at the cabin with me."
"Well, Sam doesn't have any activity restrictions but he has a hole in his heart and several in his lungs and he has a failing pancreas and bone marrow failure as well.  So, if anything is going to come up, it will likely be in the area of breathing and maybe feeling sick after he eats but nothing serious."
"What?"
"Ya, it sounds scary.  It's just this crazy disease we have.  It's not a big deal though.  Don't worry.  It's not like he's going to drop dead or anything.  I'm not worried about him going at all.  It's fine.  If something happens, just call me and I can come and get him or if it's serious, call 911 and just tell them he has heart and lung issues.  Really, nothing's going to happen!"  I realized I was talking in this rambling, princess falsetto like you would hear at Disneyland.  Maybe I thought it would sound less gloomy if I spoke in octaves!   I don't know what I thought.
"What's the name of the disease so if something happens I can tell the paramedics."

This is where I didn't want to go!  Now it sounds serious!

"It's just so rare they wouldn't have a clue what to do I mean like less than a 100 people in the United States and only 4 with the mutation Sam has and three of those 4 are my own kids and it's really not a big deal nothing is going to happen I really don't want you to worry or be afraid that he shouldn't do something i let him do everything I mean what's the worst that can happen he needs to be normal live a normal life he has his rescue inhaler and other inhalers and his medications...."

Notice the missing punctuation?  Ya, it was missing when I spoke this run on sentence!  There comes a point when what was suppose to be a 'here's my number in case Sam gets sick' conversation turns into, 'are you kidding me?  Why are letting him leave your sigh?' kind of conversation.  I kept talking trying to downplay the reality but it kept sounding worse.  I hung up and kind of chuckled to myself...

That didn't exactly go well!

That's the reality.  I don't want to scare people or sound like we have overwhelming, huge problems but they still need to watch out for random things that could happen.  If I were watching over 20 kids, I would want to know...just in case.

Well...I will sure feel rotten if my Disney, sugar coated story backfires and Sam drops dead on the mountain for the 10 mile hike!

The truth is, that's life.  But...sometimes it's better to live in our little world and not venture too far out of our own backyard.  It's then when we realize how different and scary we can be.

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