Friday, April 12, 2013

changes & the weekend.

Mabel had two new seizures yesterday.  
Bethany was with me during the first and Carolyn was holding her during the second.  There were many in between, as always, but these were different.  
Changes are happening.

Last night she choked a dozen times before we even did her medicine.  Each time someone would look her way and then look at me.  We shout out, "You ok, Mabes?" as if she is going to answer with some great reassurance.  She comes out of each episode smiling, as always but fear invades the rest of us.  
We know the inevitable and none of us really want to have to live through it.
None of us want to watch this sweet baby choke to death.

I picked her up to realize she had puked a little.  
Choking, seizing, puking.
That was my day.

But then in the dark of night someone started the music and my toy room filled, once again, with dancing.  Mabel perched on my shoulder as she always does and I felt her body jerk and twitch as she giggled to the rythm of the music.  I held her close and laughed out loud as if to heal my soul.  

This sweet girl won't always be giggling.  
It is said that her disease will steal that from her and probably sooner than later.  It is written that she will eventually rest in a 'vegetative state' until death steals her from my grasp.  Mabel's smile may stay but it also may not.  The life that is within her eyes will remain but so much of what makes her unique is inside of the sound of her giggle and the shape of her smile.  So I held her and swayed quickly back and forth so that she could continue to express how happy that made her.  

I am there, in that moment.
In each one.  
My mom reminded me just the other day at how Mabel's weak little neck muscles turned with so much strength to try and follow me across the yard.  She used what strength she had to purposefully look my way. She probably couldn't see me; that's the reality.  But she tried with all of her might.  And when I noticed I called her name and she responded with tapping.  A light erupted in her cheeks as they spread open in a deep and meaningful smile.  And I was there; present with her at that exact time, in that moment.
And every single other moment as well.

Despite every other thing happening in our lives, I am (probably even more now than ever) purposed on being present.  Mabel and I are connected and intertwined in a way that is divine.  The redheads are so intuitive to me and are sensitive to what is happening.  God has so prepared their little spirits for this great big life and although the circumstances of what may lie ahead for them grieves me so deeply, I am incredibly thankful and proud of these kids.  They are adaptive and perceptive and mature.  

Changes of all kinds are happening.
In Mabel.  In me.  In our home.  In life.
But it is what it is, as always.
And I know that looking back I will be able to say that I stayed fully present for these kids through it all and I know in my heart that they will know that too.  

Happy weekend, friends.


Amy said...

Damn Ramee, that was a good one.

Peg H said...

You are the children are always in my prayers. I know you struggle, I know it is hard for you. I don't know the depth of your struggles or the hurt of your heart. But I know, through your beautiful writing of you love of God and your love of your children. You, Mabel and the redheads inspire me to be better, to be present, to look to the Light for the answers and fully depend on Him. Thank you. Enjoy the moments this weekend and hugs all around.