love will find you where you are...

Courtney in 2004
Having a child with a chronic illness and disabilities, you learn to appreciate the smallest things. You learn to celebrate each and every smile, laugh or moment of joy. You learn that some mornings you wake up feeling rested and gloriously uplifted and other mornings you will feel like you got hit by an two ton truck and every bone in your body is broken.

This morning I was feeling broken, discouraged and so, very, very tired. When things in life are fragile, one hit with the right instrument and the glass around your heart shatters. Yesterday, one moment I was whole and in the next, tiny shards lay at my feet.

I had received some very good news via email about some writing opportunities and was feeling cautiously optimistic about where life was going. It's a delicate thing a writers ego and even though I was feeling slightly overwhelmed about my ability to handle this new challenge among the craziness of my daily life, my confidence was beginning to rise. Then WHAM! The bottom drops out once more and I was left staggering and completely off balance.

The devil went after my mother's heart and scored a direct hit!

After three months of ups and downs, including weight gain and loss, seizures and illness, Courtney has lost three pounds in ONE week! It's just astonishing to me. I am baffled and utterly clueless as to how this could happen. The Gastro team is just as confused and our poor dietitian is ready to give up. We are all feeling tapped out. One moment we are up and in the next...totally trashed.

"What's the big deal, Mary? Just be patient and she will gain it back" said a well-intentioned friend.

I felt like I had had a seizure and my world was toppling all around me. You see I am totally responsible for Courtney's care. I feed her. She cannot feed herself. I had followed all the instructions and have for nine weeks now. Things were going so well weren't they? Courtney was gaining slowly but surely. She even had a few weeks with a one pound loss or no weight gain. That was OK. Patience and perseverance is the key isn't it??

THREE pounds!! Even the doctors voice cracked. That's a lot for someone like Court, especially with no known physical reason for it. Also, the seizures have gotten more intense which is down right frightening. Blood tests are negative, scans are negative, swallow tests negative, scope tests negative. It has been three months now. What the hell is going on??? WHY is this happening??

So last night I literally laid my head down on the kitchen table and wept. I bawled like a baby for about ten minutes. My husband just stood next to me with his hand on my back and waited for this wave of emotion to pass. He knows me so well. I am like a dam, eventually I burst and the walls have to be shored up once more. I have been walking this path for seventeen years people and there are good days and there are bad days.

Yesterday was a BAD day!

So what now?

As my son would say "Mom, what's the plan?"

I had no stinkin clue. Not.one.clue.

So I went to bed and left it all alone. I woke up feeling like the world was sitting on my chest. I did not want to get up and face one more day like yesterday. That paralyzing feeling I get when things are really bad was beginning to creep in again and suffocate me.

I got up and went into my daughters room to begin preparing her for her day.
And there she was smiling up at me as if to say "It's all OK Mamma. It's a new day. No worries mate!"

I could hear God smiling. I could feel the anxiety draining from every part of me. It is going to be OK.

In God's time not mine. He is the master architect, not me.

I KNOW that for sure.

I KNOW that God is here in this house, right now with me.

He is in control because I most certainly am NOT!

He is asking me to trust Him with Courtney's life AND mine one more day.

He is asking me to shed the fear and just lean on Him for my EVERY need.

He is asking me to love Him as He loved me...with my WHOLE life. ALL of it.

The anxiety, the sadness, the confusion, the trepidation, the lack of confidence, the anger, the guilt, the frustration.

He is asking me to give it ALL to Him. He will CARRY it...ALL of it...IF I let Him.
So I will...let Him.

Love has found me right here in this place of pain and confusion. I have prayed. I have cried. I have pondered.

I have surrendered one more day to My God...

His love is in my daughter's smile, her laughter, her sweet curly head resting on my shoulder as I read His word.

It is in my husbands strong embrace and whispered words that everything will work out if we just believe and trust.

It's in my son's promise to his sister that he will be waiting for her after school with stories and sweet hugs.

It's in all of your prayers and kind words of support for me and my family. You see these challenges and burdens are made easier by every single person who has ever whispered a prayer for our girl. Our family is not alone in this. I am not alone in this and my heart is filled with gratefulness...

I am not so tired now. His love is here...right here, right now.

God will heal what is broken and I will move on through another hour, another day and will lift my hands in praise for the One who never leaves my side.

I imagine Him singing these words into my heart:

"As you know, we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy." James 5:11

That's what it's all about...Passionate Perseverance...wouldn't you say?
Blessings and Grace,
Mary
~~~~~~~~~~~~~~~~~~~~~~~~~~~~


The Words I Would Say
sung by the Sidewalk Prophets

Three in the morning,
And I'm still awake,
So I picked up a pen and a page,
And I started writing,
Just what I'd say,
If we were face to face,
I'd tell you just what you mean to me,
I'd tell you these simple truths,

Be strong in the LORD and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
Take your time and pray,
These are the words I would say,

Last time we spoke,
You said you were hurting,
And I felt your pain in my heart,
I want to tell you,
That I keep on praying,
Love will find you where you are,
I know cause I've already been there,
So please hear these simple truths,

Be strong in the LORD and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
Take your time and pray,
These are the words I would say,

From one simple life to another,
I will say,
Come find peace in the Father,

Be strong in the LORD and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
Take your time and pray,
Thank God for each day,
His love will find a way,
These are the words I would say

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