The start of it all….

I want to start journaling my entire story. So here it goes. A piece at a time… 
I’ll start from the very beginning…..my world came to a halt when I learned I was unexpectedly pregnant – not in a good or bad way, but a halt nonetheless. I quickly grew accustomed to the fact I was to be a mom and I thought of all the things expectant mothers do….preschool, she would be a ballerina or a poet, the cutest outfit to bring her home in, all the fun things we would do. 
About 20 or so weeks I had a sonogram (gestational diabetes had me getting them every two weeks) and the dr noticed her body had grown but her head had not. Strange. No big deal. He said it would catch up. Every sonogram that followed showed the same thing. Her head had still not grown past 20+ weeks but her body was on track. Something felt ‘wrong’. I finally begged my dr to look further into this and she sent me to a high risk OBGYN. It was an intense appointment. With my mom by my side the dr did the sonogram himself for over an hour. I laid there. It was quiet. It was cold. Then the earth stopped spinning. He so softly let me know that Parker’s head was small because her brain had stopped developing. He sent me for a fetal MRI to get a full idea. I had 3 weeks left in my pregnancy. It took a week to get back the results. It confirmed something was ‘wrong’. They didn’t tell me a diagnosis but on my check/out sheet were the words ‘Microcephaly with slanted forehead’. My mom and I cried in the elevator on our way to meet with the NICU dr. 
The NICU dr warned of many things. Basically anything you can think of including death. But they were all certain she would go straight there following birth. I remember there were babies in the room screaming. He saw the concern on my face and told us they were babies born to heroin and were awaiting their methadone. I was pissed. I was trying to keep my baby away from this place while there were moms knowingly putting their children there. He never spoke of a diagnosis but I remember him saying the phrase ‘smooth brain’. I googled it as soon as I got home. I was devastated. Google, of course, is a horrible idea and only tells of the most horrible cases. Either way, I felt alone. Isolated. Scared beyond belief. There were 2 weeks until I held my daughter. 
The time flew by and at exactly 39 weeks my regular dr and high risk specialist decided I needed a c-section. Parker’s head was too small to make way for her body during a vaginal delivery. I was a nervous wreck. And they prepared me for the worst. 
I remember them holding her over the sheet to show me. I remember thinking ‘she has no head’. She didn’t. It was so tiny. They immediately whisked her away. To NICU. To testing. She had her first MRI when she was an hour old. They finally let me see her that afternoon. 
She was beautiful! Beyond anything I imagined. She was perfection! I, for the first time in my life, held an angel. I didn’t know what our future held and, in that moment, I didn’t care. 
  
When she was 2 days old the doctor walked in the room to tell me the news. Her diagnosis. Lissencephaly. Smooth brain. All he did was speak of what she wouldn’t do. Couldn’t do. And gave her essentially no time to live. He spoke of how horrible her life would be. He didn’t know when or if she would ever leave the hospital (btw we were discharged together on day 5). He wanted me to sign a DNR right then. I politely refused – it didn’t feel right. I knew she had more fight in her than that but I was still in shock. I cried. Bawled actually. A deep, gut wrenching sob. Primitive honestly. I was weeping for all my plans for my daughter, for me as a mom, for us as a team. I was weeping for the what could’ve been’s, what should’ve been’s. It was the day I started mourning my daughter. That might sound weird to some, but you can ask any parent who’s given a diagnosis with a short life span….you grieve. You grieve what was, what is, and what should be. 
  
My faith was shaken. I questioned everything about myself, about God, about life. I was angry. But mostly I was lost. The doctor told me how rare Lissencephaly is and I thought I was alone. I cried all the time, but only when Parker was sleeping. I refused to let her know I felt defeated, sad, terrified. 
I definitely did the whole ‘fake it ’til you make it’ thing for the first few months. I put on a brave face hoping it would become real sooner than later. I pretended to know what I was doing and Google did help with some of that. But I was still lost. And every time I felt I was finally adjusting something would change. A NG tube was added at 2 weeks, seizures started at 3. I was constantly trying to adjust. 
I can’t tell you the defining moment, but one day it was all ok. I was ready to face anything and everything. Looking into my daughter’s eyes gave me a reason to fight for her, for me, for us. I was ready to kick some ass to make sure my daughter had the best life possible. Every day started with a smile. There were still plenty of tears and some woe-is-me moments, but for the most part life was great because God gave me Parker. I no longer felt the need to question Him or question why. It just was and she was perfect to me. My life would change day to day, in the best ways possible, because of a little girl named Parker. 

  

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3 thoughts on “The start of it all….

  1. Wow this is so similar to our story. My pregnancy was fine until at 38 weeks we found out baby’s brain stopped developing at 20 weeks. We fought for a week and decided not to terminate. They said Benjamin would not survive the birth, would not breastfeed, would never walk or talk… He has microcephaly, lissencephaly, polymicrogyria, … He did survive and he did breastfeed. He’s more eighteen months. He’s still like a newborn in terms of what he can do but he’s a real fighter and a real charmer! Can’t wait to read more of your story xxx

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