Friday, December 21, 2012


This morning I woke up and I had a plan.  I was going to write about the hype of Christmas. 
 I was going to write about how hard it is for me to buy my children gift after gift knowing that some aren't receiving anything.  I wanted to write about how I struggled while shopping for Mabel and broke down in an aisle because there is absolutely nothing that she plays with anymore.  She doesn't even look up to see what's in front of her on most days.  I wanted to write about how hard Christmas can be because I find myself asking "will this be her last?"  
But as I pulled her from her crib this morning and a pajama-footed boy followed, I decided that I cannot write in depth about those things.  Two nights ago, I could have sat here and poured my heart out.  I would have been explaining the wretched scene in my lonely van on the way home from a 30 minute shopping trip in which I was alone.  Alone is never good and my mind was racing; tears were falling.  Even yesterday I could have sat here and talked about how scared I am every day of the changes that I see with Mabel.  Her breathing is changing, there are deep gasps, her swallow is limited and she's choking.
She's always choking.

I would have written about her cry.  The cry that aches my bones and chills my steps.  I would pound out exactly how it feels to hit my breaking point and how awful it feels to say and think the things that I often do. I would write about how my body hurts from holding her, some days for hours on end and how I long for relief but how I rush back because she only shows a true desire for me.  She calls out in her muffled, strained voice, "mmm" which means mom and I crumble at the knowing that this is my fate.
I was going to write about the desperation that I feel to just touch her hand and feel her breathe against my chest.  I would have talked about how Christmas draws out deep emotions in me that don't really make sense and I resent the day because of it.  And that's not fair and it is confusing to me because this day isn't about any of these things, rather our King and I've usually not been distracted from that.

 I was going to write about how I despise the fact that these days with Mabel somehow feel like a countdown rather than celebratory days of growth and change.  I was thinking about writing about how deeply I long for her.  How powerfully I want to squeeze her, breathe her, save her.

But then I whisked her limp body from her crib today and she smiled that smile.
And she tapped my shoulder, trying to feel safe with the position she was in since she can no longer see the way that she once could.  She laid her head gently on my shoulder and I whispered good morning all the way down the stairs.  She giggled and responded to me like she always does with such a pure love.
I could write about all of the things that happen here every day that are sad and truthful.  
The regression, the choking, the seizures, the blindness, the crooked fingers, the awful cry, the limp body, the weight loss, the strange and scary and unfamiliar things.

I could write about them beautifully because I am living it.  

But I could also write about the movement of her hair and the way she squints her eye when she smiles.  The way her voice chirps when she is trying so hard to make a noise.  I can write about how she laughs when other people are crying and how she loves music more than anything (except for me.)  She knows her daddy's voice and she loves following Heidi as she chases the cat through this big, drafty house.  

My days are zig-zagged with good and bad.  They are still sprinkled with emotions that are unpredictable.  I felt awful and depressed about shopping for Christmas.  I felt unbelievably sad to see that Mabel had lost weight this month.  I feel wretched that she was doing so well eating by spoon but now is choking even on her own spit.  I hate this brain disease but love this girl and yet they intricately go hand in hand.  

The emotions are unable to be separate.  Somehow I find that I have become accustomed to the sadness and it is now part of me.  I don't even notice it much anymore.  I find that to be an amazing part of who we are as individuals.  We have this great ability to adjust and adapt to life, tragedy and beauty-all rolled together.  

I don't remember shopping or wrapping last year.  I don't remember the days that led up or the aftermath of the holiday.  I was in a much different place last year.  And I can truly say that good or bad, I am feeling everything this year and I will remember it.  The grief, though present, is not all consuming like it once was.

 I could spend my morning writing about all the things that are challenging, frustrating, and downright depressing about our days or I could spend the morning living.
With these girls and this boy in this beautiful home that is warm and ours.

Today I will choose joy.  
I will not write about those things, rather live them, experience them, process them and tuck them away in my heart for safekeeping.
To share another day.
Christmas weekend is upon us.  Wrapping, baking, visiting, snuggling, eating, sleeping, and laughing are on my agenda.  What about you?

Photos from the phone to follow this evening!


Steve Finnell said...
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Tiffany said...

Oh Ramee. Hot tears for you and with you this morning. Praying His peace quilts you in comfort, and that joy is really in reach today. Praying you through every single hard, beautiful, ugly, glorious moment. Praying your heart and mind allow you to savor the here and now of today and not panic over the tomorrow. Oh, I love you, sweet Ramee. Jesus is near. Let Him be. <3