Wednesday, June 6, 2012

broken.

Our computer is still broken.  We thought it was fixed and working but no such luck.  Hopefully by next week sometime it will be up and running and I can catch up on therapy blogging.

This has been a week of ups and downs.  Mabel started reaching for my face last week and has done it a few times since.  It's a huge milestone for her and is the sweetest reward for this mom's heart.  After days of feeling almost-too-good, we had a really horrible night that was once again a vivid reminder of our new life and the grim reality of it.

Mabel had a great day.  She was alert, laughing, happy.  And then before bedtime she had a very obvious neuro episode of vomiting followed by hours of crying and shaking.  There are some things that have changed since she first started having these little episodes at just a few weeks old.  For one thing, she is bigger.  And although she is very fatigued and weak, her body can be strong in moments of restraint.  She tightens her limbs and I have to physically try to get her joints to give and loosen.  It's incredibly frustrating and sad-not to mention scary.  For the first time ever, Daniel came home from work to be with us. 

She finally settled...her entire body still, except for her tongue which involuntarily trembles almost constantly.  But I was able to relax and break down once I knew she was sleeping.  I cried harder than I have in many months.  I said things that I feel guilty repeating and things that are so unfair for a mother to have to think about.  Daniel held me and I felt like he finally understood the depth of this little girl and all that she brings to our life. 

A baby whose brain is seizing the way that hers is isn't going to get better.  If we don't figure out the problem and try desperately to fix it, we are in for a lifetime of this...or even worse is that we are facing the reality of a much shorter life for our baby than what she deserves.  What she deserves is to be healed and whole and although I'm past being angry with God-I still can't say that I understand it or accept that He won't intervene and heal our daughter. 
He is sovereign.  I trust His will.  yada yada yada.
But I don't know why, if He can do it and I profess that He can...He won't.
I'll never understand that.

I have found myself in the fetal position, in the arms of my husband so many times this year but never have I had the type of cry that I did just a few nights ago.  I sobbed so uncontrollably that I didn't recognize my own voice.  I was speaking and it was foreign.  I cried so hard at the reality that this is my child who is suffering and no one even knows why.  Time and time again I have come back to that exact statement. 
No army is coming to help me here.
It's just she and I...in the dark of night.

Medicine isn't up to par.
Research isn't up to par.
There are medical and legal limitations.
No one wants to take risks.
And children are dying.

It's such a pathetic and desperate feeling and yet, what do you do?
You are told to sit back and accept it.  Know that God has a greater plan.
And for the past couple of months I went into "sit back and try to accept this" mode.
And I'm not so sure I can just stay there.
If I'm not fighting for Mabel, no one is.  And I'm sick and tired of that.

This may be the start of something really great as far as this mom chasing big things for a little girl.  I don't know what the future holds for her but I do know that God didn't create me to sit back and take life as it comes.  It's not in me.
He made me perfectly aggressive for this fight.  He equipped me with a voice that people listen to and a voice that is often heard.  I may not understand His ways but I sure do trust them and I am seeking Him for something bigger now. 
Will you join me in praying for whatever it is He has for us in the coming days and weeks? 
---
I can't wait to get back to writing.  The kids are having a really good summer so far and I just want to share their adventures.  There is so much happening in our life and yet so little.  It's a perfect balance of calm and busy.  Gentle and crazy.
I am enjoying these days.

There will definitely be photos from the phone posted on Friday and hopefully I'll be back soon after.  Enjoy the rest of this gorgeous week!


1 comment:

Jessie said...

Prayers for your family.