It's hard to be normal

It's hard to believe that Sam is one week post surgery.  Today, he went back to work but with limited activity and by limited I mean, all he can do is walk around, nothing else.  He gets to shower on Thursday so he is looking forward to that.

I feel like I'm walking around in a fog.  I mostly feel numb after an emotional weekend.  Spencer has been sick since Saturday and that has been frustrating.  Despite the busy, tiring, emotional weekend, I have been able to solidify a few thoughts.

We were very ill-prepared for this life changing event.  We accepted it, I did minimal research and we just powered through, never stopping to consider the difficulties that we face now.  I see that more and more as I witness the response people have to Sam when they see him.

On Saturday, when we were at Walmart, we stood at the front of the store waiting for a friend we had taken with us.  We ran into my cousin who got a pacemaker about 3 years ago.  I asked him how he managed right after and he manages now.  I asked how low is heart rate was before getting a pacemaker and how high it is now.   He said it changed his life.  He felt almost immediately better...he is 85 years old.

After he left, I said, "See Sam, there's hope.  Things will get better."
"Do you know how that makes me feel when you ask 85 year old men how they feel with a pacemaker and think I should feel the same way?"

Nope...that hadn't really occurred to me but I was glad he pointed that out.  It's true, there's a big difference between a 19 year old and an 85 year old.

I wasn't really saying the right thing on Saturday because then I said, "I bet you didn't realize that normal could be so hard."  Meaning...having a normal heart rate has been a challenge but his response was...quite loud!

"What is normal about this?  I'm not normal.  I will never be normal.  Name one other 19 year old you know walking around with a computerized heart!"

I was actually so happy to hear him put actual words to his thoughts.  I almost started cheering but instead I just kept at him til he got a lot of frustration out.  Since Saturday, he's been doing better emotionally but man, his heart is doing weird stuff and I don't get it.

He is still experiencing skipped beats.  He literally takes 15 steps and his heart is racing at 150 bpm...that number just keeps rising each day.  Nothing is really getting better in fact, he would say he feels worse than ever.

All of my kids have a condition called Dysautonomia.  The autonomic system is faulty in them and that plays a part in regulating a heart rhythm.  They also have some clinical symptoms of mitochondrial disease so I'm worried that these issues are relating to their nervous system freaking out with doubled heart rate and the fact they already have energy issues in the cells of their muscles.  I don't really know...just hypothesizing at this point.

We head back to Utah on Wednesday to get stitches out and wound care and I'm hoping they will talk us through what is happening but I have a feeling we will only see a nurse this time.  We will come home late that night and turn around Thursday to get Shelbie down for her little stay the rest of the week...It's a long story why we can't stay down there but on the bright side, I will save money on hotel fees!

We are trying so hard to just be normal about this.  To not let it disrupt our lives too much but it's honestly hard.  There are times I wonder if we did the right thing.  I guess that question only leads to dead ends at this point.  I know we would have watched his heart completely die so we really had no choice but still...I wonder.  I think maybe the hardest thing is just knowing that this is never coming out of his chest for as long as he lives.  From here on out, he relies on a computer to keep him going.

I know there are so many more feelings yet to surface from both of us.  As soon as I feel things coming up, I'm quick to shut it down.  I'm just not ready for a meltdown yet.



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