Wednesday, May 20, 2015

Emma Leigh Elizabeth.

I sit here staring at en empty page, praying for the words of a story I never expected to write-the story of my little Emma Leigh. A story cut way too short, but a story of love, of risk, of healing, and of family.

I was on my way to hang out with friends when I got the call. There was a 10 day old baby, she was sick and had been left at the hospital. Must be HIV we thought. I immediately turned around, picked up my mom, called my friends to cancel, and went to go see the new baby. Little did I know that she would become my baby, or that she would change my life in such an incredible way.

We were soon told that is wasn't HIV, it was hydrocephalus. Knowing the surgery and special care this would require, I decided to take her home with me, so that she could receive one-on-one attention. As soon as I meet baby Elizabeth (nicknamed Lizzie) and I held her in my arms for the first time, I knew that she was something special, and the whole world started to see it too.



The following days were filled with trips to the city and doctors appointments, and the following nights were filled with cuddles and lullabies. It didn't take long for Lizzie to steal my heart. She quickly had me wrapped around her tiny finger as I argued with surgeons in order to get her the surgery she needed. I refused to allow her to be treated as less because she was a 'orphan', so I was nicknamed Lizzie's fierce mama by the nursing staff.

At 13 days old, Lizzie received shunt surgery.  Four days I spent in the hospital, each day falling more in love with Lizzie. Those four days turned into countless return trips to restitch a head that wasn't healing. The spinal fluid continued to leak out of her head instead of into the shunt. Doctors sat down with me, explaining that the prognosis wasn't good.

Hydranencephaly.

The words meant nothing to me as my head swam with terminology way over my head of diagnosis, and quality of life, and treatment, and feeding tubes.

One year, definitely not more, but probably way less.

I began to feel the weight of the words as the significance of them dawned on me.



All of over Facebook, people were following Lizzie's story, and praying for a miracle.

I was on my knees every night, praying and trusting in the only One that held the answers. This was not just the story of a girl in a foreign country. This was not just a diagnosis, this was not just a statistic. This was the little girl I held in my arms. This was the little girl that had stolen my heart long before I began to realize the risk of it. This was my reality.



April 14th, Lizzie had a court hearing. I became her voice when no one else showed up to speak for her. The judges, phycologists, and social workers listened and watched with wide eyes as the white girl with the Guatemalan accent told them that it didn't matter that the baby she held in her arms had special needs, or that she hardly had a brain, that despite the doctors saying that her life wasn't worth anything, this baby girl meant the world to her, and that she was so loved. That the value of a life did not depend on what you achieve. Because Lizzie didn't have a birth certificate, they asked me if I wanted to name her. I told them the name that God had long before put on my heart.

Emma Leigh.

Emma meaning "whole and complete" and "by the tree"

Leigh meaning "healer"

Whole and complete was what I prayed for her brain to be. I didn't understand what "by the tree" would mean until later.

Leigh was my mom's middle name that she gave to me as her firstborn daughter, and it was something I knew that I wanted my first daughter to have as well.



The next day Emma turned one month old. We had such a wonderful day with her as we took her to buy cute little dresses and soft blankets. She finally got the staples in her stomach out so she we gave her her first bath. That night we dressed her in purple with a big flower bow and took her to worship with some friends. And the night wound down the last song we sang was "Set a Fire"

The song goes: 
Set a fire down in my soul 
That I can't contain 
That I can't control. 
I want more of you God. 
I want more of you God. 

No placeI'd rather be. 
No place I'd rather be.
Than here in your love,
Here in your love. 

Getting the words wrong I held Emma close to me and sang, "No place I'd rather be than here in your arms." I guess she took my words seriously.


That night as we both feel asleep with her in my arms, she went to be in Jesus' arms.

The next day was a nightmare for me. Filled with a funeral I never wanted to happen. Filled with saying good-bye to my first daughter.



At her funeral, two passages were spoken over her:

"And I heard a loud voice from the throne saying, "Look! God's dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with the, and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away. He who was seated on the throne said, "I am making everything new!"
and 
"Then the angel showed me the river of the water of life, as clear as crystal, flowing from the throne of God and of the Lamb down the middle of the great street of the city. On each side of the river stood the tree of life, bearing twelve crops of fruit, yielding its fruit every month. And the leaves of the tree are for healing of the nations."

My little Emma was now by the tree of life. 
This last months has been filled will a lot of tears and a lot of heartache. I'm not sure how people are supposed to continue on with their lives after the loss of a child, because I still feel like I'm just barely going through the motions.
But through it all, I'd do it again any day. Emma changed my life. And she was worth every second.