Tuesday, August 14, 2012


I always worried about Mabel being diagnosed with a 'genetic' disease.  I had gotten used to the idea of a sporadic mutation or a random disorder but struggled with the idea of her having something inherited.  

I worried that things that I thought were unique to Mabel before a diagnosis would then be revealed to just be part of the disease that she had.  For instance, are Mabel's eyebrows this beautiful and bushy because she's Mabel or because all other children with her disease also have this trait?  It has always been in the back of my mind and I thought it would be disturbing to find out that she had a mutation that would cause her to have similar features, likes and preferences as other children with her same syndrome or disease. 
 Last night as I danced and sang my girl to sleep in my arms, I looked down as her eyes wandered behind her eyelids and a smile crossed her face with each inflection of my voice.  

One of the first things I read about Batten's children was how they seemed to enjoy music, even after much deterioration in their bodies.  Most responded with a smile and calmed at the sound of instruments or songs.  
 For a split second last night I felt a bit of sadness.  Was Mabel happy hearing her dad's guitar, dancing with me in the kitchen, and hearing me sing to her only because this specific gene in her body is telling her to be? 

But God didn't let me think on it long before He spoke to me.
"She likes music because I made her to like music.  I created her to love the sound of your voice and the familiar tune of her dad's guitar.  She specifically knows her brother's voice when he sings and as the other children around her begin to sing the beats of those songs that she recognizes, I want you to remember that I did that too." 
 I continued to sing and sway with Mabel resting gently against my chest and I began to cry at the simplest verse in the song I was singing.
'Come, just as you are, to worship....'

Just as you are.  
Sick.  Well.  Doubting.  Scared.  Ugly.  Fearful.  Hurt.  Sinful.  Wretched.  
Just as you are.  Come.
 There are qualities of Mabel that are so unique in her that I could recognize them anywhere.  There are qualities about her that I want to bottle up and put in a safe place forever; one that only I can re-open and visit again.  These are the qualities that only the giver of life gives.  
Special, intricate, delicate details of my girl that make her HER.
 Like her beautiful blue eyes that make her famous-to me and everyone who sees her.  
 Like the way that she snorts in a laugh and her ears with no inner flap.  
Her brilliant button nose and the way her belly button is half inny, half outty.  
Like the way that she twists her fingers on top of one another and how her hair falls onto her cheeks when I'm holding her.
 I am in love with the God who consumes me like a fire.
He made and gave me 3 beautiful children.  One just happens to have a name for all the issues that daily plague her body.   
 It was a name that we were in search of for so long and having it did nothing but clarify to me that God cares enough about who we are as people and what we need in order to fully trust and depend on Him.
I needed Mabel's disease to be named.
I needed the beast raging in my beauty to be recognized.
God knew that about me because He created me this way and He loved me enough to lead me along the perfect path to finding out exactly what I needed to know.
 But I also know that our Lord doesn't call out to Mabel using "NCL" or "Batten's disease."  God calls out to Mabel by her name, which means love.
God calls out to Mabel as 'Child.'  'Forgiven.'  'Whole.'
Our Lord recognizes her as His. 
I see her smile and it reminds me of Braden.  
I see her hands and they remind me of Nora.
I see her eyes and they remind me of Jeni.
But as a whole...I see Mabel. 
Beautiful, untainted, totally pure girl.
When God sees her I believe He probably revels at His creation.  He is probably so pleased with His child.  She is everything that I can never be.  She is everything that He created her for.  
And I would imagine that for the God who creates all things, that must be an outstanding feeling.
I struggle from day to day with so many things in this changing journey.  Mostly they are questions in my mind between the Lord and myself.  Mostly it is trying to make sense of the senseless.  
But what I know for certain is that God cares enough about me to speak to me in a tiny room in the dark of night about my child that I love more than life.  I believe He does this because He loves her even more than I do...and even more than I could.

His presence in her is incredible and if you have held her, smelled her, or heard her giggle even for a second you know what I mean.  But His presence through her is even greater.
He is a God who is alive.
He is a God who speaks and the mountains tremble.
He is a God that controls all things and makes them perfect in His time.  
Mabel and batten disease go hand in hand.  It is part of her.  The world has given a name to why her body jerks and why she has little vision and why those things will eventually get worse.  The world has stepped in and brought about answers that the world can bring.

But Jesus.
My sweet sweet Jesus-made Mabel and made her wholly who she is.  I am so thankful that I am at the place that I can now see the things that she enjoys as part of who she is and not part of a disease.  If I were writing this even a few months ago I can not be sure that I would say the same.  Again, He has all things perfected for His time and this is the time when I could clearly see all that she is without tainting it by NCL.

Mabel is a masterpiece.  
She's a remarkable, wonderful masterpiece.


Elizabeth said...

This is a beautiful post. My stomach dropped when I read the part about music- because that describes G perfectly too. Music is our go-to soother. I then started to obsess about that- but I was missing the point of your post. God gave our children music as a gift- it is uniquely part of them and I am so grateful for that.

~Ariane~ said...

Beautiful post! It made me think and remember that we are ALL God's masterpieces...how wonderful!?

Reese said...

Thank you, Ramee. I needed to read this post.