Sunday, August 5, 2012

all IN all.

And the angels will throw them into the fiery furnace, where there will be weeping and gnashing of teeth.
Matthew 13:42

Yesterday I sincerely questioned whether the Lord had returned and I missed it.  I sincerely wondered if I were truly living in hell.  And then I sent a text to Krystal and she replied so I felt like maybe if she was safe then so was I.

All joking aside, though, the days are hard.  Mabel has, once again, been crying constantly.  Weeping and wailing that causes a sensation to shoot through my bones that is nothing but anxiety.  She is grinding her teeth so aggressively that I feel like she will have no more before it's all said and done.  Grinding and weeping and wailing and torment.

I feel so sorry for my girl.  I feel sorry that I can't console her and that nothing I do seems to help.  As a mom, it is the most hurtful and painful feeling to be so helpless for your child.  
I cry out, "I know baby.  I'm so sorry.  I'm so so sorry."
My sorrow goes deeper than just what she may be feeling or not feeling.  My sorrow is sometimes guilt for having her.  My sorrow is sometimes guilt that she suffers while we all live healthy and strong.  My guilt is sometimes so consuming that I'm saying sorry out of desperation for her and in myself.  

 I couldn't sleep again last night.  My thoughts race and the dark surrounds me like a thick, hot blanket.  An itchy, suffocating, wool blanket that I can't seem to wiggle out of.  I beg for sleep and it doesn't come.  Instead thoughts of my jerking baby invade my silence and I want to pound my face against a wall.  As I contemplate it and sit up, wildly ready to evacuate the painful reality-my thoughts shift to things so dark I can't even begin to write them.
It's truly tormenting.  

If you think it sounds dramatic, it is.  I often question how I'm going to survive it.  Some days I truly feel like this is hell on earth.
 Don't get me wrong-my life is blessed and beautiful and full and rich.  

But when you wake up to a screaming baby whose body is jerking, whose teeth are grinding, whose tongue is protruding and whose body is so weak and limp that all you can do is hold her--it begins to feel a little heavy.  Coupled with the fact that you now know she has a 'fatal' disease so you feel the constant guilt of having normal frustrations yet wanting so desperately to enjoy every little move, breath and noise she makes.  To say it's overwhelming or suffocating would be a vast understatement.  

There have been more days than not in the last 2 weeks that I wished we could go back to not knowing about NCL.  I had settled into a peace of not knowing what was causing Mabel's severe issues and yet I was still searching and desperately wanting to know.  I feel humbled that God would reveal His mystery to me and allow me to care for Mabel better while raising awareness and hopefully someday being part of a cure for this terribly ugly disease...but I feel so angry that we are living it.

I feel angry that I now know that her brain is 'deteriorating' or that it soon will be.  
I feel angry that on this earth, her disease is said to be caused by both her dad and I--and our 'flawed,' mutated genes. 
I feel angry that her legs are weak and that she can't eat doughnuts.  
I feel angry that she can't speak and that she will probably lose her vision.
I feel angry that other people are going about their lives in such a trivial way and that I'll never again be able to do so-not ever.
I feel angry about almost everything at one time or another...except for God...at least not today.

And yet, I also feel a peace.  
Which is confusing.
But I've learned that I don't need to justify it or diminish that which I'm feeling-as a whole.
I'm angry and peaceful.
So I can testify that the two can go hand in hand.

God gave us emotions and created us to very much in His image.  I have come to know a God who feels every emotion that He gave us to feel.  He put them in us and I desire to glorify Him while still living wholly aware of my every emotion.

It's incredible how, inside of our home there is disease and crying and grinding of teeth and a mom who feels insane most days but yet I am told over and over that there is a great presence of Him.
A great presence of Peace.  Stillness.  Ease.

It humbles me to know that a God who is in the peace is also in the chaos.  I feel overwhelmingly sad and yet undeniably taken care of.  He is my all in all.
All in the crying.
All in the darkness.
All in the anger.
All in the hurt.
All in the center of it All.

There are harder days yet to come and yet I know that He will see me through.  Or join me through, rather.  In the midst of it all-that is really all I need to know.

Will you continue to pray me through?

1 comment:

Rebekah Boes said...

You don't know me, but I just wanted you to know I find amazing strength through you. You see, I have a 10 year old son with Tourettes, a 9 year old son with Autism, a 7 year old son with hydrocephalus and suspected aspergers, an almost 2 year old son with Celiac and other food issues... And I myself have,Lupus, Rheumatoid Arithritis, Sjogrens, and Reynaulds. I am about to go in for another chemo treatment Thursday.
But YOU? Are AMAZING. You remind me how blessed I am. How though my life may sound devistating on paper, it is SO FULL OF LOVE AND JOY. My boys are happy. And healthly. And my God, are they SMART!! Me? I am still trucking along. I am still working with special needs kids, still volunteering with my church. I am not giving up. Despite the days when I want to climb under my covers and just cease to be.
Long story longer (lol), I read your blog daily. And despite not knowing you, I am connected to you. You give me strength. You remind me to look back to what is important, the simple joys, and HIM. I thank you so much for all of this. You are such a strong amazing woman. And you too are blessed with wonderful, beautiful, special children. I will continue to pray for you all, especially during this difficult time of knowing.