Monday, May 14, 2012

mothers night.

Mother's Day ended with a scare. 
What started as a crying fit ended with lots of seizure activity followed by massive amounts of vomit.  While washing Mabel down in a lukewarm bath she started to seize more aggressively than I have maybe ever seen before.  I couldn't get her body to stop shaking and even as I lifted her from the tub she throbbed and trembled aggressively.
 She finally calmed after what felt like hours.  In reality it was one hour.  One very long, very sad, very scary hour.  She had gone almost 3 weeks with no vomiting and although she seizes often day to day- it has never been like this. 

It was a very abrupt push back into the reality of my life.
 I'm part of many online support groups for epilepsy,  mitochondrial disease, rare disease, unknown disease, etc, etc, etc.
This week alone 3 children died from seizures alone.

Three babies gone too soon.
And my baby's epilepsy is intractable, which means uncontrolled.  It means that at any minute she could do exactly what she did last night.  Although I try not to let worry steal my joy and control my days, I do let reality be my guide as I try desperately to navigate each moment with intention and truth.  The truth is that we are very lucky every single time that Mabel pulls through an episode like she had last night.  Some do not.
 I woke up exhausted this morning and with that old familiar feeling nagging at my spirit.
"Please God let her be alive when I go in to check on her..."
A thought no mom should think.
A feeling no mom should have.

But she was alive.  Alive and smiling.  She is beside me now, 'talking' and pulling on her feet. 
I know her every smell, her every noise, her ever crevice.  I know the sounds that come from her.  I have memorized it all.  I know each eyebrow, each ear crease, each tooth stain.  I could recognize the palm of her hand in a crowd of hundreds. 
I am mesmerized and absolutely infatuated with every detail of this little girl.
And so I have a desperate fear that lingers with every good day and every bad night that passes.  They come and go but the fear stays.  It is here, always.
 My Mother's Day was perfect in almost every way.
My Mother's Night was another story. 
But it was real life, which isn't always perfection.  At least not in this house.

My heart was so heavy for all of the mother's who have lost children. 
My heart was so heavy for all of the mother's who are waiting for children-desperate for paper work or medicine to give them their miracle at last.
My heart was so heavy for mother's who are grieving their 'perfect' idea of a child and who are just beginning to adjust to the idea of a new, special life.
My heart was so heavy for children of any age whose mother's were not here with them.
My heart was so heavy for mother's who are holding out hope for a cure, or at least an answer.

My heart is heavy for you, friend.  And I'm praying you through.
Specific requests?  Please email me [] 
I'd love to join with you in whatever your heart is needing...
and I'd be honored to know that you're doing the same for me.

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