Thursday, December 27, 2012

a thursday.

She stopped grabbing her feet and pulling them close to her ears.  I'm not sure when it happened.  I can't pinpoint it but it did.  She no longer bends the way she was famous for bending.  
Changes are inevitable and they are coming.
 My heart is broken for the known and the unknown of this disease and so many others.  The truth is there is so much we know.  We know what we can probably expect and how Mabel's little brain will eventually function or begin to shut down.  We know that other organs will be affected and that it will cause chaos in her body, even more than we already experience.

But we don't know when.  We don't know what will happen first, what it will look like when it does happen and how it will drastically change our lives.  All we know is that it will.
Somehow.  In some way.

She has stopped opening her mouth for food.  Although it would only be for 'pleasure' anyway, she's just no longer interested.  Last night she had a bite of mashed potatoes and gravy and seemed to like it.  She smiled but wouldn't open again.  That's not as heartbreaking as some of the other skills that she has gained and lost because she has never really eaten by mouth, but over the last six months she had done so well.  
It's disappointing but it's reality.

As the days trudge on, I often don't even notice that things have changed.  Daniel and I both noticed that she hadn't grabbed her feet within a day of one another but we aren't sure how long it has been.  We just sort of adjust and re-adjust to all of her new normal's.  I suppose that is what is most frightening.  How will we recognize the big changes?  Will we even know when things look worse than what they are? 
For now, I try to cling to the things that she is doing.
Smiling.  Giggling.  Tapping.
She brings me so much joy.  

I can't believe she is mine, still.
Tomorrow I will celebrate the day that I fell in love 10 years ago.  It is also the day that I married my love 8 years ago.  Time sure flies when you're...
....well, more on that tomorrow.  

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