Friday, February 4, 2011

here & now: Mabel's journey

I have struggled to start typing this post.
I started journaling online years ago before I was pregnant with Nora. Basically it was a way for me to write, vent and journal without actually putting pen to paper.
I love writing. It is literally everything to me. An escape. A comfort. A gift.
If I couldn't write anymore, I'm not sure that I could breathe.
I mean, I am many things: A wife, a mom, a christian, a friend, a sister, a daughter.
But when defining myself, I always come back around to "writer."
So when I started journaling online it was an outlet for me. And then I got pregnant with Nora and was living far from home and it became a way to keep in touch with my family. And then Daniel deployed and it became a great stress reliever. And then I had Braden and needed an escape. And then life was a whirlwind of good and I enjoyed writing so that one day I could look back and have precious memories of these times with my husband and young children.

I was never writing with an audience in mind. It was never my intention to have everyone I run into at the store know everything about my life. It is a wonderful blessing but I now find myself conflicted. I feel like I am suddenly picking and choosing what I should write about and what I should keep private. It's no longer an escape for me. It has become a hard balance and one that is troubling.

I don't want it to be. I realize that I would not feel this way if the Lord didn't have me in such a place of vulnerability.
Even saying the word, 'vulnerable' makes me cringe a little.
I have lived this life where I want to be transparent yet I find that in the midst of something great and deep, a trial of unknowns, I cannot own up to that which I have long spoken of.
The Lord is teaching me that being honest and being vulnerable are not the same thing.
In fact, not even close.

Being vulnerable means stripping away everything that brings us comfort.
Knowledge, power, and control make me comfortable.
I'm a 'red' remember?
I find comfort in taking action and "doing things."
Yet in the midst of something that I cannot control, I find that I am scared, conflicted, troubled and naked.
Stripped bare in the middle of a whirling wind that I cannot stop nor control.

I have always felt like I allowed God to control me.
My choices, decisions, actions; my everything.
And then suddenly I realized that Mabel was 6 months old and she wasn't looking at me.
She wasn't reaching for things. Her body is weak.
And I'm thrust into a chaotic stream of events that has made me confront myself in a way that I have never experienced before.
Suddenly I have no answers. Only opinions; of which I don't need nor want.
And suddenly I'm forced to look at this woman who thought that God controlled every part of me and realize that I have been putting on the brakes when it comes to something out of my comfort zone with Him.
And that's a daunting place to be.

I've struggled even to write it; to explain to anyone what is going on with Mabel and inside of me because I don't understand or know for certain about either of them.
But I need to. I need to write it. I need to express it and let it escape from inside of me. I'm at an extremely internal place and I am learning alot but am feeling the need to expose much of it.
For myself.
Because I know I need to look back at this process and this journey and see God in it.
In the midst of the unknown.

Part of the struggle for me is the explaining of that which I don't know yet.
A diagnosis for Mabel would help me in a way. Because then I could act on what I need to 'do' next to help her.
But in the meantime; in the wait-
I have no idea what is the outcome.
Only that God holds it in His hand and will bring glory from it.
That's all I know.
Well that, and the fact that my idea of my life and my reality isn't the same as it once was.
It's all changed a bit.

So although my thoughts may be scattered and my words or feelings may not make sense to some of you, I'm going to write them anyway.
Because although I love you, it's just not about you right now.
And that has to be ok for once in my life.
This is about Mabel.
And about Mabel's mom.

So what has led us to MRI's EEG's, X-rays, neurologists, opthamologists, developmental pediatricians, physical therapists, occupational therapists among so many other overwhelming things?
-Failed hearing tests until 3 months old.
-extremely weak muscles; low muscle tone.
-not focusing on anything or looking at a specific object.
-not reaching for toys.
-not visually responding to surroundings.
-All newborn reflexes still present. (startling, hand clasp, tongue thrust).
-sometimes very stiff.
-lethargic and overstimulated easily
-popping and cracking of bones, especially right hip.
-shows no preference in being comforted by swing or me.
-no arm or leg movements are intentional at this point.
-head shakiness and unsteadiness.
-Evaluation puts Mabel at a one month developmental age. She is currently 6.5 months old.

So you can see that the idea I once had for our future with Mabel is skewed a bit.
In fact, it's uncertain.
But I know that the Lord is not surprised. He chose us for her.
I am a capable mother for Mabel.
And I am confident of that.

Putting it all out in the open is hard for me.
I'm still coming to terms with most of it myself.
But I don't want to live in denial or not accept it. I want to be practical and visit it as it is.
Because it is what it is.

I'm feeling defensive in some of my conversations and am going to spend some time exploring that with the Lord. I'm not sure why I'm feeling so frustrated with people and their ideas about this situation but I can tell you that I'm trying desperately to walk in the Lord's grace for me and to show the same to others in the midst of it.

I don't want to be made to feel like that if I pray harder, or trust God more that this will just go away for Mabel. I know with my entire heart that God could do that.
If that is God's choosing, He indeed will.
But I also know that I have witnessed great, powerful people of God pray for things to happen in their lives and God doesn't deliver exactly how they pray He will.
I hate being made to feel like I'm defending the fact that something isn't quite right with Mabel, when in fact, I'm her mom and the truth is...
something isn't quite right with Mabel.

It's not in my nature to sit back and not act. I'm not going to simply say, "oh, my baby's just on a delay," only to have someone see her later and tell me that she has a serious disorder that could have been treated or prevented with early intervention.

I don't want to be swallowed up by it and consumed by this.
That's why I need to stay present with myself during this time.
So be near to me and pray for me.
But don't try to fix this for me.
Or even try to fix me.
I'm just fine.
I just need the Lord and the support of those who love me.
Just support.
Just love.

Next week will be filled with a whirlwind of tests, therapy, waiting and hopefully a diagnosis or a path to one. With a team of people around me, both medically and spiritually, I feel like I'm on the path to a place that is really good for me.

Please don't confuse my doctoring of Mabel with doubting of God.
We are praying over every step of this journey and trusting God's hand will be upon the Dr's who see Mabel. I am entrusting this child to the Lord and am thankful that I have discernment to make the right decisions for her.
God has already placed people in our life strategically for this time and that is evident. It's such a confirmation that we are in the center of His will, even now.

So here is my reality:
I have a special needs 7 month old.
A sentence I never wanted to write and one that, quite honestly, I never thought I would.
Next week I may be able to say something different or I may not but either way, this is where God has me in this moment.
And truly, I'm ok with that.
Even thankful.

I'm feeling a little sad. It comes in waves.
I'm feeling overwhelmed.
And I'm still not sure how to navigate these waters.
This is all new and is all going to take alot of time.
It's changing me and in this time I am thankful for a faithful God, friends who love me, family who is near, a husband who is strong and supportive and the ability to care for this sweetest gift in exactly the way God has equipped me to do.

Writing this has freed me.
From this point on, I will be able to share openly about my day to day feelings, emotions, obstacles and triumphs.
And I look forward to that.

This is no surprise to God.
He is near. Right here, in fact.
And I am thankful more than ever to know Him.

"I am God, and there is no other; I am God, and there is none like me. I make known the end from the beginning, from ancient times, what is still to come. I say: My purpose will stand, and I will do all that I please."

Isaiah 46:9-10


Kari said...

Ramee, we are praying for you, your little Mabel, and the rest of your family. You all have such a beautiful, strong faith--it will see you through everything.

Tiffany said...

Ramee~ You know I am praying. I know God is at work and doing big things, and I also know it may be different than what we expect. Love you. Text me anytime, and I will be right at the throne on your behalf.

Firecracker said...

Of course we're praying...but maybe doing that didn't just free you but free others to open up about their experiences and enabled them to want to open up so that they could go to one another for advice if need be or comfort.

Praise God--to Him all things are made whole!