redeemer of life.

It's been a long time since I've let myself do 'the cry.' 

Soul shaking, earth shattering, heart wrenching sobs. 

But they overtook me today, finally and once again.  The last couple of weeks with Mabel have been incredibly difficult and painful.  She is in total despair and there's really no other way to explain it.  She is in pain.  Wrenching and tightening, seizing and shaking.  She has cried non stop for so many days that I have lost track. 

 

Before we moved, a couple of weeks ago, I wasn't feeling right.  I was dizzy and lightheaded and just felt like something was off.  I ended up making a trip to the ER because after 4 days of Mabel screaming and me carrying her while feeling dizzy, I just needed to be sure everything was ok. 

I left that trip in tears after being told that I was clearly just exhausted and maybe this was a wake up call to the kind of rest I really needed. 

I felt like I had been profiled. "Mother of dying child [who screams 24 hours a day] is dizzy and her blood work looks fine so she just must have anxiety, be exhausted and overly stressed." 

To which I say:  I am those things.  But I have been those things every single day for many years now.  I not only know how to recognize them but generally I do a pretty good job of managing my stress and anxiety and exhaustion from day to day.  I do so without medication and by way of natural endorphin release such as exercise, eating correctly and dancing wildly often. 

 

I was dizzy. 

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I am so sad today.  Just flat out sad for my Mabel girl and for me.  I hate batten disease and I hate that she is suffering.  I hate that there seems to be so little mercy in her days; so little rest.  Her body is exhausted and nothing changes.  And the most overwhelming part of it all for me is that when something finally does change, it will be for the worse.  There is no getting better for Mabel.  She will just live this life suffering until she is eternally free from pain in Heaven. 

 

...which causes me so much sadness.  The longing for her that I have now is amplified when I even write out the reality of a life without her.  My arms ache for her now; how will they bend and stretch without her in them?  How will my lungs breathe without the breath in hers?  How will I physically go on without her body to hold, her sounds to hear?  Her every detail is tangled in my every day.  I meet her every need, I carry her every step.  I am hers and she is mine and I cannot stop any of this from happening. 

 I can meet the practical needs that my other children have.  I can try desperately to take away their earthly pain {and I'm trying...} I can move homes, change schools, adjust schedules, bandage wounds, and hug until they sleep in peace. 

 

But nothing can be done for Mabel. 

As her mom, nothing could be more unfair.  Nothing could be more debilitating than this.

 

I held her today while feeding her and my tears fell into her hair.  The beautiful turn of her chocolate locks, tangled and messy as always.  I just cannot believe this is her life; our life. 

So beautiful; so much peace and yet equally as much pain.  Equally as much sadness.

In fact, I think that the heaviness has just become so normal that I don't feel it much anymore.  And then the rubble descends and the dam breaks, letting it all crash through and it's almost too much to bare.  The thought of her days; her pain and suffering is too much.  The thought of days without her is equally too much. 

 

And yet today, I prayed so diligently that God would show such tender mercy on my girl.  I don't know how it will come, in what ways He will show up.  We never truly know. 

But I always know that He will and He does. 

He is faithful and consistent.  Trustworthy and true. 

I need Him now more than ever and so does Mabel. 

Breath in my lungs and to hers, our Lord is moving here.  He is always present. 

 

I'm reflective this week, thinking about Jesus and the pain that he endured in his final days as an earthly being.  I can't help but be emotional at the knowing of his suffering.  And although she is not Christ, I can't help but be reminded of my Savior as I hold and walk Mabel day after day after day.  She knows no sin.  She knows only purity. 

And yet there is constant turmoil; constant suffering. 

 

I am so thankful for our God who rewards our lives with an eternal home.  I am so thankful for a God who was willing to sacrifice his life so that people like you and I have a hope that goes beyond this place.  Beyond the tears and sorrow. 

I will forever praise that God; the One whose goodness is incomparable. 

He will redeem this life for Mabel, and for that, my hope rests in Him.