Between Life And Death

I imagined my 21st birthday being like any other girl's bridge into adulthood with copious amounts of alcohol, a sash that says birthday girl and a bunch of friends around me. Getting drunk as a duck, falling over myself because my heel broke, probably ending the night puking in the toilet and making poor choices that I would never mention to anyone else. Instead I sat on a river bank freezing my ass off next to a small fire at the end of December in Missouri.

My pole broke on my first cast so I watched my husband and his friend cast their poles and take another swig of whiskey. Midnight hit and it was officially my birthday. I begged to go home. I was cold, six months pregnant, and tired of watching the two of them get snockered.

After a bit of coxing they reluctantly climbed in the truck and I waddled myself into the driver's seat. I hopped in with a grunt. As I drove them home, I cried to myself a little. Thinking about the girl with the sash and the broken heel making bad decisions. Wishing I could have been her.

That wasn’t the only time I cried. I remember sitting in my car balling, screaming at my stomach wishing I never got pregnant.

“Why, Why did I have to get pregnant; I hate you, I wish I didn't.” came out between sobs and sniffles.

I hoped it was a boy, at least I’d have a sweet little boy. But we never were able to find out. Not until that day in the hospital when she was born. The Dr. excitedly proclaimed.

“It’s a Girl!”

My husband and I looked at each other with fear and shock and blank faces. It was like we were saying oh shit, without saying it out loud. My mother stood in the corner of the room watching as her baby girl brought a new life into the world.

Everything was pretty normal. I had just had my first baby. I didn’t understand what people meant when they said you would gush all over them and instantly feel this overwhelming feeling of love. I felt like I had more remorse than love. I felt like I was a horrible mother and it hadn’t even started.

The Dr.’s office was decorated with cheap paintings and the fluorescent lights hurt my eyes and I rubbed them from lack of sleep. I remember crying to my Dr. because I couldn’t figure out the breastfeeding thing. One more demerit to add to my horrible mothering job. She grabbed my engorged, tender breast and mashed it like a hamburger and shoved it towards my baby's face as she screamed. Her little face was read.

The next visit was a blur. As I sat there, a new mother, barely functioning from lack of sleep I heard the Dr. babble on about more tests. I didn’t understand anything she was saying.

“Your daughter needs to be retested for Krabbe.” She said,

“What, What is Krabbe?”

The Dr. began explaining this genetic disorder and what all happens if someone has it.

“Childhood onset would mean that your daughter may not live past two, there is no cure, But I assure you we will do everything we can.”

We moved to the lab area where they drew tubes of blood and poked and prodded my baby as she screamed bloody murder and I held her down so the staff could get their samples. I was helpless and tears filled my eyes as I watched the blood slowly fill the tubes. I was in a haze. You mean this child that I screamed at in my womb, the one I didn’t think I have a connection with, may die before two? All of a sudden my motherly instinct kicked in and I was mad that I couldn’t protect her, I couldn’t save her.

All we could do was wait for the call from the Doctor. It was a week or more and I had no news. Then my phone rang. Don’t Worry Be Happy began playing and I ran to my phone to answer seeing it was the Doctor, I froze. The hairs on my neck stood up, all my muscles stiffened. I finally hit the green button.

“Hello”

“Hi, Ms. Taylor?” The voice came across in a sweet way.

“This is her.”

“Ms. Taylor, I'm calling about the lab results for your daughter. It turns out her white blood cell count is high and it appears that she has the genetic disorder we spoke of last week. I’m so sorry to have to tell you. I’d like for you all to come in and speak more with our specialists about options to try and help with your situation. We have an appointment set up for you on Friday at 11am? Will That work for you?”

A moment passed as I tried to comprehend what I just heard.

“Umm.. Okay. Thank you. ye-yes. We can see you on Friday.”

“Awesome! Again I am so sorry and we will do everything we can. We will see you on Friday.”

Click.

The conversation was over. Tears began to well up in my eyes. I held my daughter tighter. I had to tell her father. Shit.

I instantly called him.

Ring… Ring… Ring..

“Hey Babe, What's up?”

There was a moment of silence as I swallowed the saliva filling my mouth and wiping the tears from my eyes.

“The Dr. Called.”

In that instant he knew.

“Ok Baby, I’m on my way.”

Before he got home I had already cracked the fifth of 10 High in the freezer.

We hugged, we cried, we screamed, we drank, and drank, and drank. He got in his cop car that evening a little buzzed with red eyes from crying as I sat by our baby that we didn’t think would survive toddlerhood.

Friday arrived. We were both in a haze as we drove the hour trek to the Doctors office. We were scheduled to see the specialists today. As we sat in their office. They began explaining numbers and myelin and white blood cells. They began explaining that Krabbe comes from the parents and their chromosomes and that both of us would have to be a carrier for the child to have the disease.

One of the doctors began speaking.

“In your daughter's case, she has all the signs of a carrier for Krabbe. However, her cell counts may indicate that she will have it right now; it appears to just be a pseudo case and she does not actually have the disease after looking further into her charts.”

I sat quietly in disbelief, we have been freaking out for days. I had nothing to say. I just sat in silence.

My Husband spoke up, “Wait so she doesn’t have Krabbe?”

“No sir. She will be just fine and grow normally.”

A feeling of relief came over us. We didn’t know how to handle the new news. I wanted to hop for joy but I couldn't. I was still a new parent, lacking in sleep and feeling weirded out about everything happening.

Once we got in the car I began crying again. I called my mom and we told everyone the good news. Life was pretty simple from then on. Our daughter grew up to be healthy and smart. I drove her in the car each day to her grandmothers before work, having her repeat after me.

Say “I’m Beautiful.”

“I’m Bootiful.”

Say “I’m Strong”

“I’m Strong.”

Say “I’m Smart”

“I’m Fart” my two year old repeated.

We giggled. Say “I’m a big girl.”

Every single day...