My heart gets sad...

... every time I see her lab work.

I've stopped hoping for good news and just gotten to the point where I'm accepting of the bad news.

Its even to the place that the bad news doesn't even cause me to wince as much as it once did because I'm expecting things not to look good anymore.

So...my heart gets sad...

Until she opens her yellowed eyes, and stretches that broken body as she wakes, and then giggles so loudly and so unrestrained at the mere idea that shes gets to play for another day.  She remembers that I promised her at bedtime that tomorrow we would go to Blake's ball game and the excitement about the drive causes joy to spill forth as she signs "car, drive, go now".  I smile and allow the soothing presence of that smile to seep into my sad heart because just as her daddy said to me last night as she giggled and giggled until we were all short of breath,

"There may be a lot about this life that she doesn't understand, but she understands how to live it so much more than most of us."

Yes, she does.


This afternoon she and I will load up in the car and make the two hour drive to Blake's game.  I don't dread the drive because I know what joy it will bring to her.  She's been looking forward to going in the car for days and the longer the drive the better for her.

 I expect tomorrow we will be admitted to the hospital once again for another blood transfusion.  Like clockwork every 13 or 14 days shes needing more blood.  Her body no longer making an adequate supply on its own.  No one even guesses as to why.  We've all just accepted that this is what it is.  Her liver is sickly and declining in function more and more with each set of labs that we collect.

 My sweet girl...she doesn't even act as though anything is wrong...she's so unaware that life could be any different...I'm grateful for that.  More and more as the years pass I'm grateful that she doesn't know to long for the things she doesn't have or can't do.

We smiled so wide listening to her giggles at the ball park last weekend as the trail of little girls ran back and forth right in front of her.  She loved it each time they would pass by.  Her laughter filling our space and easing the ache in our heart knowing she would never join them.  It doesn't matter to her one little bit.  Her joy came from watching the chase and listening to their sweet little voices chatter around her.  She loved watching and was content to find her joy in the sounds of theirs.

My heart gets sad...but then...it finds joy again from the sound of hers.  I learned that lesson from her last Saturday.  She continues to teach us how to live this life...and I'm grateful for the instruction.