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An Outsider

One would think that as the children get older, wiser, more mature, life with a chronic illness gets easier too.

In some ways, it does but in most ways...not so much.

It's been an awful weekend.

Spencer has been planning to go to Colorado this weekend to speak at a baptism.  None of us counted on him getting sick, or having to have IV therapy so he headed out for a 36 hour road trip with his dad to give the talk and come home just in time to get therapy done on Sunday and start his prep for surgery Monday.

Shelbie is beside herself with worry about her counts.  She is also feeling the effects of the transfusion and she too has had a host of GI problems lately.

Sam is not doing much better than the other two...well, physically, he is I guess but he is in the midst of a bad depression.  It's been a very long time since I saw this kid happy.  It's only getting worse and this weekend, we sort of had it out with each other.  He is refusing to take medication and that is bugging me to no end.  I don't understand why he won't take it.  I asked him if I told him I was going to give him $500 if that would make him happy.  He nodded "Yes."  Then I said, "Well, I'm not going to give it to you in one lump sum.  I am going to put in my hand a $20 bill every day until I have given you $500.  All you have to do for the $20 is take it out of my hand.  Would you do that much for $500?"
Again, he nodded 'Yes.'
It's the same thing with taking medication.  You have to take one tiny pill once a day and in return, you find a little joy once again in life.   Unless you love moping around, feeling sad, anxious, angry, scared...why wouldn't you take it?  I don't get it.

Finally...after hours of poking and prodding him, lecturing, asking questions...he yelled, "You have no idea what it's like to be me!  You will never know what it feels like to live with this disease.  NEVER!!  So, why should I talk to you about it?  You don't get it!"

I was not happy.   However, it sounds like a similar yelling fest I have had with Shelbie in the past and actually again on Friday night.   For the first time, I felt like an outsider.  I felt like all the rest of the people who stand outside of our experience and misjudge us.

I wanted to yell back at them all...'You have no idea what it's like to be me! Watching my only kids deteriorate!  What do you think that feels like?'  I bit my tongue for the simple reason that he is right.  They are all right.  I finally understand that.  After all these years, my experience is not better or worse, just different.

Sometimes, these moments happen.  I hate them! I hate it when we all start coming apart at once. I hate the fact that we are each growing into our own stories.  It takes a great deal of energy to regroup and live in the moment of what is.

In so many ways, the kids are way more mature than any other young adults their age.  They have to be yet at the same time, they are very immature emotionally.  I think some of the traumatic moments we have had to face has changed them.  Shelbie spent no less than 20 minutes on Friday telling me what a lousy mom I am to not have found better doctors for them.  If I had worked harder, been more careful, we would have doctors who know what they are doing and doctors who care.  She wouldn't be dealing with low blood counts again if I had just done my job better.

Sometimes, you just feel like an outsider looking in.  It's weird when it's your own children who cut you out from the secret handshake and member's only clubhouse of Dyskeratosis Congenita.

I'm feeling a little beat up and pretty much exhausted.  On a promising note...Sam and I came to some understanding after I dragged him up to the nursing home this afternoon to push old people around in their wheelchairs.  Amazing how quickly one's perspective on the difficulties of life changes when you make a difference for someone else.

Well...on we go.  As usual.  Big day, liquid diet starts at midnight and bowel prep to follow x3.



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