Wednesday, July 11, 2012

truly does.

Yesterday was a really bad day.  Mabel was awake only 7 hours total from the time we put her to bed the night before until we put her to bed last night.  During the time that she was awake, she shook and seized profusely and vomited twice.  It was one of those days where reality sinks into my soul and buries it's head deep in the pit of my gut.  
Reality is ugly.

As Daniel and I lay in bed last night I watched my husband's jaw grow tight and his eyes fill with tears as we talked about the life of our daughter.  This beautiful, courageous, remarkable little girl whose brain won't give her rest.  It's unexplainable and there is no meaning to be found in it on days like yesterday.  On days like yesterday it just flat out sucks and I don't care what kind of hidden lesson we are supposed to be learning.  It feels like a sick joke; a horrible nightmare.  
And then I refocus and realize I'm not waking up.  This is it.
Reality is ugly.

Reality is seeing her so distant and wondering if she will emerge from within herself again.  It's holding your limp 2 year old over your lap and seeing discomfort but not knowing how to help her.  It's watching her vomit up every last bit of formula that you have given her and then noticing how dry her lips are because it's barely enough to live on anyway...
Reality is when she won't stop crying, won't stop shaking, won't stop grinding her teeth and nothing you do helps.  
Although reality is hard, it's finally good to know that I am not so alone.   Daniel and I are at a good place in this journey.  It's a devastating, unrecognizable place.  It's looking at him and knowing that we can talk about the life of our little girl or what will happen if God chooses to take her.  Kids die of fewer seizures every day than what Mabel has and this is something that we know all too well.  I see it plastered on facebook-beautiful children whose eyes are distant like Mabel's and whose bodies shake in constant trembles.  The Lord takes them from earth and releases them of pain and yet we are here to watch it, live it and grieve them.  

It took Daniel a long time to get here, but last night in bed as we asked ourselves some really private, difficult questions, it became clear to me that we really are finally on the same page and we really will be ok.  The fear could swallow us up.  It has and it may again.  But today I woke up feeling very much alive even after expecting the exhaustion from worry to have taken over.  It hadn't and I went about this day with an overwhelming sense of love and gratitude for each of my children. 
 Lately I have been focusing again on superficial things.  I have gained 3 pounds and to someone on the outside, that may seem absurd to even write about.  But for someone like me, it is essential to be able to control something.  Everything in this journey was taken from me and I released all sense of control to the Lord, in a long process.  The one thing that I have held on to is the one thing that I have always been able to maintain and control.  To see those three pounds on that scale is liable to send me into a complete panic.  It's the one thing that I want to grasp, cling to and manage.  It's the one thing that has been steady for me all along.

I have also been trying desperately to control our finances and I tend to get obsessive about numbers.  The crunch, the managing-it all makes me feel very powerful and alive.  
But I need help giving those things to the Lord too and letting Him wash me with a peace that only He can.  
Will you pray for me?
Will you also pray for our girl?
Tomorrow is her 3rd EEG.  This is the test that shows us her seizure activity.  She has been on her seizure meds for 18 months now and although we are constantly changing, adjusting and manipulating them-there has been no change and in fact, almost an increase.  

There is nothing more devastating than feeling like there is nothing you can do for your child.  There is nothing more hopeless than wondering when the medicine will cap off and life will come unraveled at the seams.  There is nothing more unnerving than knowing that even the things we should be able to control with our children, we cannot..
Not at all.

Our reality is that this little girl with the big hair, big smile and even bigger eyes is a perfect gift from God.  But wrapped in that gift is a complex set of instructions written in a completely different language.  We are unsure how to put her together, operate her or fix what is broken.  We have not been handed a simple, delicate gift that comes with a lifetime guarantee.  We have Mabel.  
A perplexing, intricate, wildly beautiful gift given in a box that doesn't quite hold her in.  
There is no warranty on this baby.  

There are only unknowns.  So many unknowns.  
And so in the unknown I am learning how to dance desperately in grief and living; joy and sorrow; pain and fear.  I am trying desperately to be alive and seek a God who is alive.
I am learning to swim in a sea of peace that doesn't feel familiar but is so refreshing, although new.  
I am here in this place of complete and total exhaustion, simply asking for something to give so that I can wake up tomorrow and make it another day.

So, tomorrow, will you pray for me?  
And for Mabel?
And for her Dr's?

Nobody here knows how to help our little girl.  
So tonight I am so thankful that I know the only One who truly does.


Danielle said...

Praying constantly. Seizures suck and seeing your baby suffer is torturous. I will be thinking of you... hoping this process lends some answers.

Reese said...

I am praying for you, your girl, your family, and the medical staff, Ramee. I am so sorry there are no

Love is all you need said...

You have a beautiful blog and family. I will be praying for that beautiful girl of yours. I know nothing about what she is going through, but I have heard of a lot about seizures being fixed through a plant based diet? You are one amazing Mama!

Amy said...

R, praying for you & your girl. I pray that Our Lord carries you all during this test & everyday after. I pray that road ahead continues to be paved for Mabel. Stay strong.