love endures.

Yesterday was a profoundly bad day. 
I found myself wrapped tightly in Ashley's arms on the floor, in that same familiar position that I used to find myself in daily when I was knee deep in grief.  Cold kitchen floor, hands wrapped tightly around me knees, rocking back in forth, trying to breathe, trying not to vomit.  Heaving cries of sadness, loss, frustration, helplessness, loneliness, and fear.  Yesterday it all came pouring back over me and in a moment I was wrecked with sadness.

The day was going seemingly fine.  Until then it wasn't.  That's how this goes.
Batten disease. 
A dirty, filthy, sneaky, secretive, looming in the darkness, awful snake.

I hate this disease.  And I've refrained a very long time from saying that because I love her and clearly it's part of her.  In fact, it makes up most of her.  She's her but with this disease and sometimes I can separate them but sometimes I can see only it. 

Only the suffering, only the seizing, only the shaking, only the coughing, only the fragile, only the trembling, only the God awful crying. 

Sometimes the thing that separates her from it removes itself like a wrapper being caught in the wind from your car and blowing swiftly out into the breeze.  The veil is lifted and the disease becomes visible and the vomit in my stomach rises.  My chest heaves and the fear rises up and makes itself known once again.  "Here I am, time to play."

It's sickening and warped and treacherous.  It's vial and repulsive and grotesque and absurd and what's worse is that she smiles at nothing, oblivious to all that is happening inside of her and what it's doing inside of me. Her love and beauty overwhelm me and the guilt of hating this disease descends somewhere back into acceptance, a loving of her too great for hate of any kind; even for what is slowly killing her. 

After hours of crying and seizing and a fever that eventually spiked high, after medicine that is supposed to be sedating and would be for any 'typical' human being was given, after my breakdown and her breakdown and hours of stress and anger subsided, sleep came in the form of an infant child wrapped up in my arms, criss-crossed in my great grandma's rocking chair, feet tingling from not moving.  Before falling asleep her hand reached for my face and rested there.  I could feel the heat from her fever through her fingertips and I smelled her hands, as usual, smelling of drool from chewing on them all day.  I breathed her in long and hard.  Long and hard. 
But her body never rested.  Seizures continued for what seemed like hours but was truly only one.  I eventually put her in her bed, praying that God would continue to give me the strength to rest myself.  Rest my mind.  Rest my body.  Don't worry. 
What will happen will happen, so just rest.
God please let me rest. 

I did and she did.
Through the night. 
She woke this morning drenched in and wreaking of sweat, still with a fever. 

So far there is no crying.  She has had a bath and is generally happy.  She drank only half of her morning bottle by mouth and Tylenol is keeping her fever low. 

My back and neck are aching from the weight of her.  The constant and full weight of her.  My mom posted a beautiful photo to me on facebook last night reminding me that one day I will miss the weight of it all and she's right.  She's so right. 

And I don't ever forget that.  I look at my dear friends whose children are in Heaven and I am more than mindful that they would give anything for an achy back and one more night rocking an overgrown babe in their grandmother's chair.  I will never forget that.

But I am constantly trying so very hard to be more present; more mindful of the exact moment that I'm in because truly, it is the only moment guaranteed to me.  And it is more than valid that in these moments, I am scared, tired, achy, frustrated, lonely and desperate for relief, not only for my own aches but for her suffering.  One day I will long for the weight of her, I'm sure.  But I'm positive, even then, that I will remember how I longed for her to be free from pain and I will feel peace in that moment, knowing that she is. 

Today's a new day.  It's always a new day.  The sun is shining and the house is quiet.  For this moment, she is calm and her fever is down.  I am grateful for the prayers of all the people who love us.  For the hope that she will pull through and the hope that when one day she doesn't, Heaven is waiting for her.  She is teaching me so many things every single day.  She is the light in this dark and hard world.  It is my honor and blessing to mother her and I am grateful, even for the hardest of days.  But I am also thankful for a Heavenly Father who loves her even more than I do and has a purpose for her life so great that even I cannot comprehend.  Even when He feels far away, His promises remind me that He is near.  He is good and His love endures. 

 

Because of Him, mine does too.