Tuesday, August 30, 2016

A Bright Life

The day I found out I was pregnant with Ava, I ran my last 5 miles and promptly turned in my running shoes. I didn't give a backwards glance. There were better things to look forward to than races and training and runner's high.

I think back to that sacred space right after marriage and right before kids. It seemed like things couldn't get better, like my life had just begun. But then came the day that I took a pregnancy test and I somehow saw color seep into what had actually been a two-toned existence.

I kept my first secret from Mike as I cherished the knowledge of her presence to myself. I planned out a special way of revealing this way-too-good-to-be-true news but, in the meantime, I wanted time with her.

Just me and her and God.

I would talk to her as I walked outside, whispering my excitement and joy. And I promised her I would be a good mama and that I would protect her and cherish her. I thanked God for giving me such a beautiful and holy responsibility.

I would care for her better than I would care for myself, I softly spoke this to her in my sleep and in my waking hours. Two days later, I revealed Ava's existence to Mike and we reveled in our secret together.

Just Mike, Me, her, and God.

Soon came time to prepare for her. So we bought the best car seat and we assembled her crib. Our family and friends threw us magnificent baby showers and we received so many gifts of love. As the weeks got close, we laid out her clothes, diapers, toys and her bear, Poby.

And then we waited. We impatiently awaited her arrival.

She was born on August 14th, 2008, one week after MIke's birthday. She was tiny, beautiful, soft, and perfect. After lots of kisses, cuddles, and pictures, we did what every parent does. We named her.

Ava Bright Lee.

We had searched long and hard for a name that would bless her and describe her and give her identity.

Ava=Life

A Bright Life.

Yes, we nodded to each other. She would live a bright, happy existence and her brilliance would point people to God in an unmistakable way.

Yet, on this very night, she is curled up in a hospital bed, forsaken from normal society: her growth stunted, her fertility stolen, her head bald, her schooling paused, her innocence stripped, her body battered.

This is nothing like what we had envisioned for her. It is as if we had named her something entirely else.

A Broken Life.
A Bruised Life.
A Bankrupted Life.

I will not mention all the hellish things she has gone through in the past years of her life. There is too much to say. There is too little space here.

But just in the past 72 hours, we watched fluid fill her little body to the point that it hurt to walk. We watched as her eyes slowly lost its sparkle. We watched as doctors and nurses poked her again and again in her private area, as they failed to properly catheterize her. We watched as she cowered in fear, rolled up into a ball to escape the many hands prodding her. We watched as her pain grew unbearable and she screamed out for medicine, begging for more and more morphine so that she could sleep it all away. We watched as her kidney function worsened and her body braced itself for kidney failure. Tomorrow, we will watch as she goes through another procedure to drain her left kidney.

I am not the mama I had promised to be. I am powerless, helpless, hopeless to help her. I can only watch in horror as she is devoured by this disease.

So, this is where our faith matters. Either God is for us. Or He is against us. Either God loves us or He doesn't. Either God is good or He's not.

This is where we either die from the pain or we rise up like a phoenix out of the fire. And, Oh God, the fire is so, so hot.

Yesterday, Ava turned to me suddenly and told me that a phoenix will go through a fire and then come out again more beautiful than ever. She had just woken up from a long nap. Shortly after, she went back to sleep. I don't know why this was on her mind or where she had learned the legend.

This is not the bright life we had in mind for her. In fact, it is so dark that we stumble hard. We cry out for God to spark a flame so that we can see what is in front of us. Just a glimpse, Lord. Give us one peek into the future so that we can endure the now.

But maybe we are thinking of it all wrong. Maybe the bright life we dreamed for her, wasn't really hers in the way we thought. Maybe her life is meant to light the path for someone else, someone who is lost.

I can't tell you how much this sucks. I want to succumb to the suffering when I see all that she has been through and all that is to come.

Yet, the thing is, we already know the Way. We do not need the extra light. So we hope that her life would be a beacon call for so many others looking for the way Home.

And, though every fiber of our being blanches at the thought of walking another step on this wretched, mangled, thorny path, we put one bloody foot in front of the freaking other. Altogether now.

Just mike, me, her, you, and God.

______________________________________________________

Ava, you are like the phoenix. You burst forth from the flames and out pour the brilliant colors that have come from the gray ashes of your pain.

We love you, Ava Bright Lee. You are leading a Bright Life indeed.


Ava Bright Lee

First picture with Mama

Uncle Matt and Ava

Uncle David and Ava

First outing as a family of three

Dada and Ava

Our pudgy, happy baby!




3 comments:

jennybabes734 said...

I hope Ava rises above the dust into a healed young woman ready to take on the world. I pray for her full healing on this earth so that she can be with you all like she should be. I'm so so sorry that she is in such a terrible place- I pray she gets better (please just be a bump in the road that she gets over and can move on from)- I send you all good thoughts. I'm in Seattle- I work for a fundraising office for St. Jude Children's Research Hospital and I'm pulling for your Ava. I send love and thoughts of peace to you all and have HOPE for your beautiful family.

Love, Jennifer O'Dell

Beverly Tucker said...

Esther, please know that you are the best mama possible. Besides my own mama, I think you are the most loving woman I have ever seen. I know it is not always easy being strong but you still are. I know you would like to crawl up in a ball and see this all go away but you still love like no other. Not just for Ava, but Gwen and Jude. Please do not ever doubt what a wonderful mom you are. And know that God does have you all in his arms and we do not know what he has in store but it is something magnificent.

Anonymous said...

There's no words. Your family has my tears, hopes, and prayers. God's grace to you all.