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Light Reborn

She slipped into our arms on a cold gray Saturday morning exactly ten years ago today. A little blue around the gills, the nurses blew some oxygen in her face. I was shaking all over (they tell me that’s  normal after giving birth) as my doctor suctioned out her nose and wiped her off. The nurse threw heavenly pre-warmed blankets on me as I stared at this little wiggling person who had just squeezed out of my body. Her umbilical cord played the role of “fig leaf” that morning, so I had to ask Scott if she was a boy or a girl. He had tears in his eyes and a catch in his voice as he answered.

“It’s a girl.”

“What is her name?” the nurses asked, as they scribbled notes and assessed her vital signs. Her APGARs were low at first, but came up to normal the second time.

“Ellie Renee,” Scott answered.

Ellie is a form of Eleanor, which means “light,” and Renee means “reborn.”

I surprised myself, watching contentedly as they did their thing with our baby and the doctor stitched me up. Almost too quickly, Ellie was laying on my chest, blinking gooped-up eyes and looking bewildered.

The feeling was mutual. I had expected this dramatic outpouring of emotion when I laid eyes on my firstborn child. Instead, I felt awkward and shy and even a little detached. Looking back, I’ve always wondered if that detachment was some sort of premonition.

For three days later, we found ourselves in a tiny consult room in the children’s hospital emergency department watching a doctor draw what he thought our baby’s heart looked like. It was nothing like the heart anatomy I studied in Biology 101. That doctor told us that her heart was so malformed that she would probably need a transplant. We sat in dumbfounded silence as they fed lines into her navel and hooked her up to monitors.

And weirdest of all? Walking out of that hospital at 2:30am without her. Her carseat ached its emptiness from the back seat of our little sedan.

The next morning, a different doctor sat us down in a small library in the newborn intensive care unit. He told us that Ellie’s heart had stopped beating for thirty minutes that morning. They had finally gotten it beating again, but no-one knew how much damage had been done… if she would wake up… if she would survive that day.

I was twenty-four, married for only seventeen months. We aged years in those first four days of Ellie’s life. We both wept in the shower, pleading with God to heal her, trying to hold onto hope, and yet trying to prepare to give her back to him all at the same time.

Three weeks later, a pediatric cardiothoracic surgeon slid a paper across the counter toward us. He told us that he would give Ellie about a 20% chance of surviving the surgery he was preparing to do that afternoon. We signed the forms, knowing that she had a 0% chance of surviving without surgery. We waited through twelve hours of surgery that day, surrounded by family and friends who knew that we might walk out there for the last time and without our baby.

She lived.

Ellie lived for eight years and eight months. She woke up, she opened her eyes, and she started a glorious and highly successful game we affectionately call “Stump the Doctors.”

Everything came slowly, but she eventually learned to take a bottle, to smile and laugh (her smile could brighten the darkest day and her laugh… oh her laugh was musical). She scoffed at sleep. We could tell time by her naps — thirty minutes to the second.

She struggled mightily through those eight years. Plagued by seizures, swallowing disorders, respiratory weakness, and lack of muscle and bone growth, she became “famous” at our hospital — notorious for throwing curve balls and for the incredible way she triumphed over horrendous infections and battled back from three more open-heart surgeries.

I’ve never seen such strength, especially in such a little body.

The love I felt for her was very different than the love I have felt for anyone else. It drove me to overcome some of my worst fears.

I used to get nauseous just thinking about hospitals. On a field trip in high school, I almost passed out when we made a stop in the blood bank. I dreaded shots and throat swabs. But when Ellie was born, I dove head first into that foreign place called the medical world.

If she needed something, I learned how to do it. I learned how to insert a feeding tube into her nose and feed it down her throat into her stomach, how to measure, mix, and feed her high-calorie formula, how to give shots, how to disassemble, adjust, reassemble, and fix wheelchairs, bath chairs, standers, walkers, braces, and splints. Sometimes she and I drove to the hospital every day of every week, to see doctors or physical/occupational/speech therapists or to have lab work done. I know the best plebotomist (draws blood) in our eight-county region. When we finally got her a communication device, I learned how to program it, trouble-shoot it, and teach her various assistants how to use it with her.

That’s how I showed her how much I loved her. I learned everything I could and did everything in my power to get her what she needed. We tried to give her the best life possible within her limitations… and ours.

Even though I did as much as I could for her, I still often wonder if I made Martha’s mistake. Was I too busy doing things for her that I didn’t spend enough time just being with her, enjoying her company? I suppose everyone who has lost a loved one to anything wonders that. But it’s one of the questions that still haunts me… did she understand how much I loved her? Did she know that was why I did all those things for her? I won’t know the answer to that until I meet her again in the afterlife. Until then, I will do my best to show everyone else how much I love them… and make sure they understand.

Ellie has been gone for sixteen months now. She slipped into the arms of Jesus early in the morning in October, 2008. Today would have been her tenth birthday.

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