Saturday, July 21, 2012


My life is so rich.  It is so rich, in fact, that it is hard to accept and feel the heaviness of the news we received this week about Mabel's diagnosis.  

The rational side of me thinks that I'm in survival mode and that my brain has become that computer that shuts down when too much information is programmed in.  
The spiritual side of me thinks that this peace I'm feeling is real and divine.

Either way I know that our mind is amazing at protecting us from things that are painful.  I am not in denial but I question whether or not I'm allowing myself to fully feel.  I'm probably not yet but soon enough the corner of my kitchen will inhabit my aching, sobbing body-of that I'm sure.

Mostly in the last 2 days I have witnessed other people feel the emotions that I have experienced and felt for many months now.  A reality that I knew long ago has been told to them with certainty and suddenly it all feels very true and undeniable.  
I am so grateful that God showed mercy on me over the last 2 years in preparing my heart for this very time.  The name of Mabel's disease changed very little in my mind, spirit or heart.

It certainly brought clarity.  It certainly brought truth.  It certainly brought validity.  
But it didn't catch me off guard or surprise me.  It didn't sneak up on me or frighten me.  
It quite honestly only solidified what I knew long ago in this journey.

I know that many of you do not know the types of things we have researched and talked about in this process.  I know that you haven't been with us in the Dr's offices, listening to the reports that they have spewed at us.  But you know that it's been pretty heavy already when we get a diagnosis like this and say aloud, 
"She might live to be ten?  Oh well that's great!"

Seems morbid, right?
Why do you think grief has been so deep and long for me?  Why do you think I was frustrated when people wouldn't believe my concerns or they didn't accept that Mabel wouldn't get better?  Why do you think the least of my concerns was about her walking or talking?

God gave me perfect insight.  
His spirit led me and He and I spent many nights researching not only medicine but more of Him.  Because as I dove deeper into science, I drew nearer to Him.  
I tucked into His embrace and I wrestled in the crevice of His strong arm.  
I never doubted this process or His purpose.
There were times I didn't like it-in fact, I hated it.  
But I wasn't afraid to ask.  I wasn't afraid of my unbelief or my ability to question our creator. 
He answered me "No.  I won't heal her now" and I heard Him loud and clear.
And that was between He and I on those dark, lonely, scary, unforgettable, miserable, painful nights.

So the rest of you heard news that I heard long ago. 
God didn't give me a name but He gave me a peace and an understanding.
It took a long time but I came to acceptance in that.  
And here I am today; a little bit in shock and very tired but no different than I was a few days ago.

For so long the search for an answer consumed my life. 
Advocating for my daughter was my priority just like it would be for anyone I love.  
The thrill of the catch was quite distracted by it's reality but all in all, I now feel relieved in the sense that I can stop hunting.  I can stop desperately seeking.
I can wake up and properly feel what I need to feel in order to make it through each day and that is finally enough.

Unless Mabel's DNA matches our Dr's exact idea of what it should look like to fit this disease (very unlikely since there is so little research on it anyway)...we will probably be doing some other tests just to clarify the specific gene and type of NCL that Mabel has.  
But overall, this is it.
We don't have to question what is causing her symptoms anymore.

I have the scientific proof lying on my counter top.  It hasn't moved from when I opened it yesterday after getting it in the mail.  It sits beside my husband's FMLA form that our geneticist filled out in quite grim detail.  It's all very surreal.

Everything in this house feels the same to me as it has for the past 2 years.  It feels complicated and frustrating and sad and hard.  It feels crazy and perfect and hilarious and maddening.  
It feels like ours.

Everything outside of this house feels messy and complicated.
It feels like I live in a world that is so overcome by petty things and I don't know how to fit into that world very well.  That has been hard for quite some time now.
  But I have to live in it and so I'm trying.  

My stomach has been hurting since I got the phone call from the Dr. and eating has been close to impossible.  It's amazing that even though I feel pretty stable in my head, my body responds otherwise.  Our bodies are incredible machines.

And even Mabel's body amazes me.
A seizing, tired, cranky mess of cells that are literally like non functioning and yet she smiles and giggles.
She knows no different.
And I want to strive to be the same.  
After all, this is my life and I know no different.  
So many of you encourage me and comment on my strength but please remember that if this was your child and you were in my shoes, you would know no different either.  You would simply live your life and do your best.
And that's all that I can really do.

So for today, or for this moment rather, I'm doing ok.
I thought you'd all be wondering and I want you to know I have smiled alot today and I fell on the floor laughing at Braden.  I went on a bike ride and I sold vegetables with Uncle Mikey.
I kissed my husband and I hugged Harper.
I brushed Nora's hair and I did my lipstick.  
So I'm ok.  
For today, I'm doing just fine.


Unknown said...

<3 love love love you sweet friend...... you are not alone..... we are together

Of Pandas and Pirates said...

I love you and your family Ramee. You are an amazing soul and so is Mabel.

Amy said...

Love you R.