166 Days....

Every now and then your mind skips backward in time.  Sometimes it goes to a happier place.  Sometimes, it flashes back to your nightmares. 

I don't know why my mind was fixed on dialysis yesterday.  Certainly there were more fun things on offer!  But sometimes you just have to let the evil memories roll.  It's part of the healing process, I guess.

Babygirl was on dialysis for 166 days.  It was less than half a year.  Yet it yawns in my memory as a much, much longer time.  We were exhausted.  We were stressed.  We were always afraid.  And every single phone call was a heart-racing adrenal-squeezing event.  I can feel my chest tighten and my breath quicken just thinking about it all. 

It's really difficult to discuss.  It  was stressful in such a multitude of  ways impossible to narrow down what specifically was the MOST stressful about it.  Not ever really sleeping.  Not ever even for a minute being able to relax our vigilance about infection.  Never losing sight of the tube hanging out of Babygirl's belly and the horrific risks it posed.  The fights with insurance to get things paid for.  Not knowing if we could keep our heads above water financially well enough to keep her alive.  Not being able, ever, even once, to keep her pain-free for a single one of those 166 nights.  Knowing that my child would frequently suffer that pain in silence so I could sleep.  And that I would let her.

Babygirl was ELEVEN years old.  Eleven.  She was given the blessed gift of eleven years of childhood.  And for the most part, her childhood ended with dialysis. 

Oh, don't get me wrong.  I understand that she is still a child.  But she is not a carefree child.  She has to 'be careful' and not forget 'she can't have that' or 'can't do that'.  At a birthday party yesterday there were lovely platters of strawberries, blueberries, raspberries and sliced watermelon.  She could have none of it (until our thoughtful hostess prepared a special platter of watermelon just for her). Things everyone else takes for granted are forbidden, restricted, limited.  She has to plan WAY ahead.  Do we have enough meds with us to do that extra two hours of play or to stop and eat dinner out instead of at home?  And she pays a price in pain for more things than anyone who doesn't know her well can begin to imagine.  And for the most part she does it with a gracious smile on her beautiful face. 

I try, really really really try not to borrow trouble, or to look ahead at what I know is coming.  But it sends chills down my spine when I face the fact that someday she'll need dialysis again.  Don't tell me how 'lucky' or 'blessed' I am.  I know those things are true more deeply than anyone.  But I know first hand what blessings cost.

DeeDee