I have had a few inquiries about if I was able to talk to Spencer on Christmas day.  Yes, I was.

Is it okay if I admit that I would have been okay to not talk to him?  I just wasn't sure how I would keep it together and he doesn't like it when I cry!  He had told me he was just going to call, not Skype but then, he ended up Skyping!!

Gosh, to see his face, hear his voice...I lost it for about 10 seconds until he said, "Awwww, mom, don't cry.  I'm so good!"  I pulled it together.

I wasn't going to tell Spencer about the genetic news.  My plan all along was to only tell him if the Doctors in Seattle needed him to do tests and stuff.  I can't imagine anything worse than receiving difficult news in a letter and have to wait a week to ask questions, then another week to get answers.  That sounds horrible and I didn't want to do that to him.

I didn't want to tell him over the phone because I couldn't see his face.  He is brilliant like me...He can hide a thousand sorrows behind a cheerful voice.  But Skype!  Darn that Skype!  I knew I had to tell him.  I could see his reaction, hear his thoughts, answer his questions but dang....Christmas?  Ruin Christmas with this?

This disease makes me so mad!!  I can't just have one happy moment with my kids.  I just wanted to focus on him, on the blessings of missionary service but it wasn't meant to be.  He's not a kid anymore and asking him in 3 months for extensive testing, he's going to wonder, put the timing together and possibly be angry I kept this secret from him.

I did all I could to keep positive; saying things like, "It's basically just a name change, it's not going to change what your life looks like today." , "There's nothing to worry about, really.  I'm not worried.", "Sam will do all the testing so hopefully you won't have to...he's taking one for the team."  "Isn't this great news?"

Sheesh...if that wasn't hard!!  I felt like I had the phoniest smile pasted to my face.  I felt the way the Joker looks!  Creepy thought.

Spencer was stunned but he didn't seem upset.  He just said, "I can't believe it!" but then, he said, "Does this mean they will be able to fix me?"

Lump in throat..."What do you mean?"
"Mom, I've been sick every single day since I got out here.  Every single day.  I just keep going but it's hard to keep food down.  Some days are better than others."

He doesn't take his enzymes for his Pancreas at dinner because he is embarrassed and it makes everyone feel awkward so that might be part of the problem but sadly, I'm just not sure the new disease name is really going to have any fixes.  Maybe I'm wrong.  I don't want to sound negative but I'm also trying to be realistic.

The one blessing I can appreciate is that Spencer has been blessed with the gift of faith, gift of humor and the gift to just keep on going!  He is so positive and he isn't afraid to work hard regardless of how he feels.  I really admire that about him!  I am feeling blessed and wish that the resentment and anger I feel towards this disease would stop trying to rear it's ugly head.



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