In the midst of all of our wonderful company and day to day distractions, I consciously realized that I was not really processing our big news. On Tuesday I made a 3rd call to Dr. S, our geneticist, just to hear him speak the words again.
"Ramee, Mabel has NCL. This is news that is hard for me to give so I know it's hard to take in. But it's ok to tell people. I am confident that we have found our answer."
And that was that.
I had a big breakdown on Rachel's couch. I curled into a ball and huddled close to her. I sobbed as I said things that children say.
"It's not fair."
"I don't want to do this."
All things I have said before and yet they feel slightly huskier now days.
I have felt sad, angry, guilty, scared and strong all rolled into one.
I have felt peace and comfort that I can't explain.
I have sensed the presence of God from deep within my belly and clear to my soul. It is something that you can't experience unless you are pressed into an intimate, desperate place with Him.
Like being secluded in a narrow, dark hallway with your shoulder pressing tightly against His.
Like being tangled in a web made solely by Him and knowing that anything could swipe it's delicate beauty away at any moment.
Like making love to fear, growing contentment deep within you and then somehow...birthing joy.
There are few people that know this kind of struggle and I am now one of them.
I am feeling especially sad for Nora and Braden. I feel sad that they will probably have to endure something so tormenting that I can't even begin to mutter or type it. I hate that out of their innocence a sadness will grow and they will likely experience something that will forever change who they are.
and then I'm reminded that I will too. [again.]
But I'm trying so incredibly hard not to dwell there. The thoughts are fleeting and natural, I suppose. But they are also very unnecessary. They will swallow me whole if I let them. Instead, I am choosing to be present and to be mindful. As always; yet greater.
Last night Mabel started to mumble, "mama" again. She hasn't done that in months. We adjusted her medicine early last week to help calm her and keep her from crying so much and today I could finally see a little bit of her old self again. She was giggling, her vision was strong and she was more vocal than usual. By vocal I mean letting out random sounds but that is our girl and it was so sweet to hear.
Braden spray painted the front of the house today.
It was red spray paint.
Daniel and I had a date night last night. We went birthday shopping for Nora. She turns 6 tomorrow and I can hardly believe it. She is definitely sassy six.
On our drive Daniel explained how scared he feels about Mabel and the diagnosis. It was good to connect and have him open up. I hate this for him.
I hate it for us all.
I was reminded on Sunday during church that I should look neither left nor right. I should not be moved by this storm.
That our God is Sovereign.
In that sovereignty, I have found a mighty comfort. I serve a God who knows all things and works them all together for good. I truly believe that.
Even now, in the midst of the deep rooted emotions, I can steady myself in knowing that our Lord has a mighty hand and His ways are great. After all, He set this world into motion. He breathed and gave us life. As delicate and precious as it is, I refuse to waste it living in fear, doubt, anxiety or worry.
I will let faith arise.
Because sovereignty goes beyond genetics. It goes beyond disease and a diagnosis and tests and doctors. Those things are amazing and I have depended on them for so long. I trust in this diagnosis and I have peace with that which God has done and is doing.
But I also know that at the end of my life I will look back and know that I surrendered to Him because His will is above all else and I want nothing more than to live in it.
No matter what that means for Mabel and her life, or for me and mine...
God is God and He is unchanged.
He is still God.