When and then

Sitting with our oncologist today, I discovered a hard truth about myself. 

My life is a series of 'Whens' and 'Thens'. 

When I get these two projects done, then I will have time to spend with you.
When we get through these next appointments, then things will be back to normal.
When the kids are feeling better,  then we will come for a visit.

Everyday, I hear myself say AND THEN...

The problem is, we never get to the end of then. There is always another then and life becomes nothing but chasing the then. 

For months, I keep hearing other people say, "Things will settle down soon, and then..."

I hear myself telling my kids, "This is just a rough patch and then...you'll be able to do..." 

It dawned on me today, while we listened to the disheartening news from our Oncologist, that we have to stop waiting for the past to catch up to us.  We have to stop hoping for the future to fall behind.  We have to stop living for When, or Why, or How...and live for What Is.

I have to stop wishing and hoping for easier days...this is my day, whatever it is.  When, is never going to happen, therefore, we never reach the then. 

I've been waiting for "When things settle down..." for months and months, years even.  Somehow, when that magical thing happens, then I will start doing all the things I wanted to do in the first place; before Dyskeratosis Congenita side tracked us.

I have missed so many opportunities waiting around for When. 

Things have to change.  I think my little experiment in keeping my sacred bowl ready to receive God's will each day has provided me with some enlightening thoughts.  I know this isn't some original thought of wisdom, but today, it struck a chord. 

We have to face the reality that Shelbie is not going to get better, the boys aren't either for that matter.  We will probably have to get use to her deteriorating health.  The lymph nodes and granulomas are not an easy thing to deal with, in fact, it's downright maddening. 

For the first time, our doctor admitted he was frustrated that he can't make Shelbie better.  The kids are not text book perfect, they don't present in the expected ways for the diseases they have.  They haven't dealt with CVID and the number and size of lymph nodes that Shelbie has.  Is it lymphoma?  Is it something else?  They don't know.

Two years ago, when she had the first PET scan some lymph nodes showed up.  They biopsied the one they could get to easiest.   Now, there are more but a few of the original ones are gone.  Some are bigger, some are stable.  Lymphoma is expected that they would increase in size, not shrink on their own or disappear.  But...it could still be a lymphoma.  It's too dangerous to biopsy them yet.

We decided that in two weeks, Shelbie will have another scan.  If there is any growth in the size of the already enlarged lymph nodes, then we will take the risk to biopsy one and/or start the chemo drug.  If they are stable, we will do nothing at this time and continue to scan at regular intervals.  Being in diagnostic limbo is hard!! It's harder than any diagnosis could possibly be.  It's full of what ifs and whens and thens.   What if it's cancer...then. When...it's cancer, then...

We've been waiting patiently for this to pass so we could get back to our life, as if this was just some unfortunate interruption.  Today, I woke up to the fact that this is life, not an interruption.  Not a side track.  Not the wrong turn...this is it!  This is what we are facing.  This is life.  This is the life that is meant to go on and not go on painfully waiting for better days.  We need to make the best of this day.  In all the mess and chaos, we have to find our best.

AND THEN...

We can say we suffered well.