Thursday, May 30, 2013

long overdue.

Oh, it's been so long since my fingers have tapped the keys.  
The practical truth is that my computer is broken.  The very real, very other truth is that there just isn't much to say here lately.  

Mabel isn't doing well.  She has done a neuro cry for 3 consecutive days and hasn't really shown signs of coming out of it.  My only reprieve has been bed time when she is sedated enough to rest.  I'm exhausted and tonight after far too many seizures and feeling her rigid body flail against mine one too many times I lost it.  She sat in her carseat and I sat on the edge of the van next to her and cried like I haven't cried in a very long time.  The type of wail that I did early in this journey.
"Why God?"
"Oh, my baby...Oh Mabel..."

Sobs erupted from my garage and I'm sure that anyone who was in earshot was aware of just how painful those moments were for me.  In all honestly, the gut wrenching, heart stopping pain that is associated with this disease never goes away or gets easier, it just becomes easier to manage in day to day life.  I found myself over the last two days trying to avoid the way she looked, the way her eyes are glazed and distant.  I found myself trying to just 'get through it' rather than truly feel it.  It's just too much.

 When Mabel woke yesterday Nora wanted her to lay with her while I made a bottle.  When I came back through the door she said, "she doesn't even sit anymore, mom."  
She's right.  She doesn't.  
And she doesn't want to be held.  Her body is tight and uneasy.  She feels different, much different.

In other news, Nora started T-ball and gymnastics this week.  It's been so much fun to see her be a part of something new.  There are other changes ahead, for sure.

Other than Mabel and the changes that I'm seeing with her, I'm doing really well.  I have never quite felt as light or happy as I feel at this exact time in my life.  There is a genuine contentment that is resounding through me and I am not sure that I've experienced it before.  I am enjoying the privacy and the quiet that this new chapter in my life has brought about and I am grateful for the promise of days ahead that are less crowded with insignificant things, rather things of richness and substance.  It's exciting to know that I am now able to make different choices and do different things with my days than I would have made before and I am learning, as is this life journey's mission to teach, that it is all ok.  

In fact, it's great.  
I am thankful every single day for the lessons that being Mabel's mom have taught me.  Lessons that are so simple and yet most of this world will never fully experience learning them. 
But I get the great honor of taking them in and using them to grow, evolve and change.  And my oh my, that is such a beautiful thing. 

Thank you for praying for my sweet girl and for me.  I appreciate your thoughts and your encouragement.  You're always so good to me....


Jessica Kramasz said...


Peg H said...

Part of me is so sad that you have to go through this with little Mabel and your other children. It's just not fair. It's not right that children have to suffer and hurt and that parents have to stand by and watch, and be broken hearted, because they can't do anything. On the other hand, I am so glad that you are getting to go through this journey with God at your side, knowing that beauty that you will get to see and the peace that you will feel. I am proud of you. You, Mabel and your whole family are in my prayers daily. May God always wrap you in His arms and NEVER let you go. You are loved.