Wednesday, April 16, 2014

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. 
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. 

Friday, April 11, 2014

changes. [moving...forward]

Change, I have found, is good. 
It's perplexing.  It's pulling.  It's humbling and rugged and downright hard sometimes. 
But it's good. 
It betters us.  Shapes us up.  Hollows us out and starts us anew.  Change, I have found, can be so good.
About a month ago Nora came to me and expressed that she was unhappy in our house.  Although we talked about the fact that our home held many, many good memories, she was persistent in the fact that it's walls just held too many sad ones for her heart.  In a very mature and wise way, my little girl was telling me that her own home was no longer a safe place; a shelter for her, but more like a harbor of anxiety and distress.  Before long, I heard her brother confirming these same feelings.
It only took that one conversation for me to know what needed to happen for my children and with that, I quickly decided, that no matter what comes in the future, for this very moment I needed to help my children feel emotionally secure once again. 
So over this past week, I spent the days packing up only the things in our home that were essential to our lives and the kids and I have officially moved.  I decided to minimize our "things" in hopes of maximizing our life.  I decided that any and every 'thing' that may hold a tainted memory for my kids was not necessarily a good item to move with us.  I decided that we are moving on, moving forward and starting fresh. 
But really, I didn't decide those things at all.  My little girl did and I'm so thankful.  She gave me permission to act on an urge that I had been feeling for some time now.  But rather than act impulsively, I am so thankful that I waited until I knew both kids were really ready for such a big change. 
"Thank you for moving us to this new house, mommy," she said this morning before school. 
"Take our picture while we work on the new house, mommy," she said yesterday after school.
And that smile.  It's one that I haven't seen for over a year.  It's a genuine smile of contentment and childhood.  She is happy and I am happy. 
Finally I can see my little girl again, through and through.  Her eyes shine brightly like they once did and they are excited at the idea of days to come.  She has neighbor friends and a house that fits our every need.  Nora is going to be ok and this week confirmed it in me deeply.  I am so proud of this little girl for being able to express her needs so articulately.
For more than a year Nora's life has been completely out of her control; all of ours actually.  And for the first time in a very long time it feels so good to have made a decision for myself and for them that was MINE to make.  And I can see that it was important for her too.  She expressed her need for something and then I made that something happen.  We took the reigns of our life and pulled them in the direction we wanted to go...and then I kicked that horse so hard in the side and we galloped forward quickly toward a change that is positive and right.  This is a change that we needed. 
It was time and we all felt it. 
Today while the kids were in school Mabel and I sat in the yard that now holds our every day view.  I looked out at her with tears in my eyes and choked back the knot in my throat. 
Despite it all; a horrible diagnosis, a husband & father leaving, a home that once held our family being left behind...despite all of that, I AM SO HAPPY.
The sun was shining and my girl's cheeks were glowing red.  She tapped on the quilt next to me as my best friend and I shared a picnic lunch with her two blonde haired, healthy boys running beside us.  I just cannot believe how rich and abundant my life is.  It's almost overwhelming to think of all the beauty that it contains. 
 I could have never imagined the twists and turns that my life would take to bring me to this moment, this day.  I could never have imagined how good it all could be.  In the darkest and most saddest moments of my life, I would have never dreamed that this was what was awaiting me. 
The love that surrounds me every day is remarkable. 
There is joy and laughter.  Contentment and ease.  There are friendships and romance, children and dancing.  There is so much good in my days. 
And now, we are in a home that will help mold and shape new memories for our family. 
Things may look different than they once did but we are here together and it all feels very much like a clean start; a new beginning.  I can sense a change in my children's spirits and a lightness in their behavior.  They are genuinely happy and I have longed to see that and feel that for so long. 
It has all been sealed and confirmed this week as we have entered into a new phase of our lives; the beginning of a chapter that I believe will be a great reward in this story that has been very devastating at times. 
All of the turmoil and stress that our old house held did not follow us here. 
We are leaving it behind.  We are moving along to celebrate the beauty in each of our present days and the day to come.  We have a gift here; the chance to start again. 
And I will do that for them.  They are oh so worth it.
There truly is a light at the end of the tunnel.  And although there may be darker days ahead [inevitably for all of us], for today, there was no darkness.  There was only massive amounts of playing, laughing, walking, && loving. 
This week was a good week.  This day was a good day. 
And that is the only thing in this entire world that truly matters.