Friday, November 20, 2015


Some days,  it feels like I have been waiting my whole life for things to work out.  Just one little thing to work out or be easy; easier than it has been.  But, it has never been easy and it never gets better.  Instead...I learn to settle.
A view from our hospital stay this week.  Sometimes, we sit in the room where families wait for their loved ones to pass on.  It's quiet and surrounded by windows.  Sometimes, I just sit here in the dark.  Alone.  A moment of peace amidst the chaos

 Last Christmas, they found a hole in Samuel's heart.  The pressure in his lungs was incredibly, abnormally high.  I fretted and cried for days about a hole in his heart.  As the testing went on, it became clear that maybe the hole wasn't the biggest problem. I begged and pleaded for the hole in the heart.  I would have given anything for the hole in the heart to be the biggest problem. There were bigger problems like multiple holes in his lungs.   Living with the thought of my son having holes in his lungs was nearly more than I could bear. Back then, I couldn't imagine how we would ever get through it.  I didn't imagine that I would even have the rest of the year with him. Here we are, a full year later.  But, it will never, ever just be a hole in his heart ever we settled.

I can't even count the times I said with Shelbie...Please, no more chemotherapy...Okay...I guess we can do more...and more we did.  And here we are...still finding a way to get up everyday and make something great happen.  She settles for a poor heart, weak blood pressure and holes in her lungs and heart.

Here we go again...settling.

A month ago, I begged for anything but E Coli. I got what I wanted...We settled for Salmonella instead. So, I accepted that fact and held on to logic that it couldn't last forever.  24 days later,19 days beyond the average duration of the bacterial infection, I'm guessing we will be settling for chronic Salmonella instead of acute.

Worse than me settling...Spencer settles.  He settles for who knows how many more days, weeks, months of losing weight, chronic pain, GI bleeding...At some point, you can't just lay around waiting to get better.  At some point, you settle on the fact that life goes on no matter how you feel.

I guess we are at that point.  Spencer has been applying for easy, low energy jobs. That was never the plan.  The plan was that he would get better and then he would go back to his other job.  He doesn't have the strength to do his old job.  He has an interview on Monday.  He'll probably get it.  It's at a ski hill running a chair lift.  A button pusher.  That's all.  I guess I shouldn't complain.  He settles for a job that takes no skill but he will be happy.  He always finds a way to be happy.  He, like the rest of us, settle for what is, not what we hoped for it to be.  It's never anything we hoped for.  I never hoped for a disease that would distort a normal life, let alone settle our dreams into something I hardly recognize.  I never dreamed that I would watch my kids struggle every single day but that is what we have settled into.

Always settling.


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