Monday, September 23, 2013


I watch her breathe as she sleeps and I count it a blessing to be able to do so. 
I watch her chest rise and fall, rise and fall.  I bury myself deep in peace and allow myself to listen to the silence of the air entering and exiting her body.  She is still, as still as she is capable of being and it amazes me.  Her eyelashes rest perfectly against her bottom lid and her lips part just so.  She is angelic, literally breathtaking in these moments and in every other. 
Although every other moment isn't quite as peaceful.  Anymore it just seems like a constant battle to make sure she is comfortable.  I only really succeed for a few minutes each day, either when we're walking; she in the stroller and me pushing, or when we are driving in the van, music on and windows open.  But even then there are moments and even days when those very simple go-to things don't work.
And that's quite honestly when the despair rushes over me once again.
There aren't many moments when I feel overwhelming sadness anymore.  Sadness gave way to exhaustion long ago.  If you see me, that's what you'll recognize.  Total and utter exhaustion.  I am completely emotionally and physically drained at the end of each day.  So much so that when I wake from a night of decent rest, I feel as if I've never closed my eyes.  It's incredibly stressful just living a single day with a baby who cries.  Colic, for instance, is incredibly demanding, isolating and frustrating.  I know because I lived through 9 months of it with Braden as an infant.  I thought that it was the worst thing that I would endure as a mom.  Truly, I thought that. 
 I never could have dreamed that a rare and random brain disease would cause my innocent and beautiful daughter to spend her very limited days wrenching and screaming, jerking and choking.  I would have never guessed that she wouldn't be able to see or swallow or eat or walk.  I would never have been able to comprehend what her life would look like or what mine would.  I wouldn't trade it, not a single second of it but I can't say that there aren't moments when I don't feel like I can do it much more.  And I still feel guilty for having those fleeting but very true feelings. 
But it never fails that the second I start to feel hopeless or helpless, tired or overused, an incredible strength passes over me and washes me clean of frustration and sadness.  Usually a good cry, a long bath or a sweet kiss from her siblings makes it all feel very manageable.  Very doable. 
It appears to be too much for just one person to handle.  And to be honest, on some days it really is. But I do it because she is mine.  And I am hers. 
And my gosh am I thankful.
Some day I know that I will look back on these days and remember the shaping that took place in the middle of the crisis moments.  I will remember the 'meeting glory' moments when I cry, scream and question God.  I will remember the vivid mornings when she and I tuck away in my big, warm bed and I hold her close.  Her body jerks rapidly and I hear her much so that when I close my eyes at night I can still hear the sound.  I will remember the walks and the quiet.  The assurance of Heaven in those moments when nothing else feels more clear or more real.  I will remember these days of young school children, happy and vibrant, adjusted and laughing.  I will remember letting my heart heal and spreading it wide open once again with the potential of being loved and of loving.  I will remember front yard quilts and long, footy PJ's.  I will remember these days and these moments that will inevitably and directly change and shape who I become in this world from this point forward. 
So I watch her breathe when she is asleep and I memorize her every single feature when she is awake.  I pick her up time and time again to kiss her cheek and push the hair back behind her ear.  I listen intently to her laugh and pay close attention to her toes.  I want to etch it all in the hidden places of my mind so that one day when photos aren't quite enough, when they seem too small to cover the giant, aching empty that surrounds her room and my heart, I will find it there, in those sacred places.  I will open it up and in that beautiful, reflective place where I allow her to be I will remember. 
Sleeping, waking, jerking, smiling, seizing, coughing, tapping, cooing, crying.
It is all mine to have, hold and cherish. 
And I do. 
I do.


Mrs. RN said...

Bless you & those babies. You are so, so strong.

Bobbi said...

That would be so hard. I love that you are so positive and live so you will always be there for her. Can you get any help or hospice or respite care? ( Don't know if hospice is needed or an option) She is so beautiful. I will pray for rest and continued peace for both of you.

Jessica Kramasz said...


a mom said...

Your words are so moving. Thanks for supporting me - Christy - Amy's mom CLN8