Sunday, May 10, 2015

A Mother's Love

At seven months pregnant - Exodus Photography
You have waited for this day when you learn that you are pregnant, and suddenly all the random things that go along with finding out this news start running through your mind and they instantly become the most important things in the world. You ask yourself a host of questions.  Is it a boy or girl? What do I do with the nursery depending on the answer to the first question?  What remodeling or repairs need to be done around the house?  What names can we think of?  How will we break the news to family?

Once you have nagged yourself long enough about the basic questions, then you start imagining life with your new baby.  How will we manage with two children?  How will big sister adjust once we bring our baby home? When will he or she crawl or walk?  Will the baby like the same foods as big sister? How will I handle the topic of not sharing, or what sort of new discipline techniques will I adopt to resolve sibling fights going on behind me in the back of the minivan?  Yes, of course, we will need a bigger car now.  Your mind races. You can't sleep at night.  Life is perfect, nonetheless, and will be even more perfect when your second bundle arrives. Your family is all that you have dreamed of since you were a little girl.  Nothing else in the world matters at that moment. 

The months go on and you no longer have to internally process your pregnancy because you have a baby bump, and everyone knows and starts to ask questions.  You do not mind, though, because you cannot be more elated to talk about the expectation of your new baby.  It is the topic du jour - at home, at work, at church, at the preschool, with strangers in the grocery store or at the mall. As your stomach grows over the months, your anticipation of your baby's grand entrance into the world grows with it.  Then you receive a phone call from your obstetrician's office that brings you to your knees.  There may be something wrong with the baby according to some blood work that was drawn a couple of weeks prior.  'TRI-' what? I recalled saying to the slow-speaking nurse practitioner on the phone.  She knew me personally and I could tell that it was news that she did not want to give me.  She ensured me, though, that many mothers receive a positive screen for this genetic abnormality but usually it is false.  In fact, just a small percentage of babies will be born with what she finally had to spell out for me - Trisomy 18.  

While she tried to give me hope, this condition would mean a lot of things that I just mentally could not prepare myself for.  The biggest uncertainty was whether our baby, which at this point we found out was a girl, would even survive the birthing process.  This condition meant that I might only be able to hold her in my arms for just a few days, hours or even minutes. An unsettling feeling rested in my belly, nonetheless, and I could not help but think about my dreams being shattered.  I was five months pregnant now, and everyone knew that I was expecting, but how would I handle conversations with friends, colleagues and strangers about the health of my little girl?  I had to hold on to the fact that the test result could be false.  About a month later, though, another more extensive test would confirm that our baby would have a 99.6% chance of having the genetic disorder that could likely claim her life before she would be able to even walk.  How does a mother process this?  What did I do wrong?  So many things run through your head and you wonder how the God that you serve can put you through something like this as a mother.  All of the conveniences of life that accompany healthy children like feeding them a bottle, videotaping their first wobbly steps as they learn to walk and simply playing with them at the park become a pipe dream.

The conversations with strangers had now quieted down.  I had little to say.  I did not know what to expect.  I wrestled with things like doing a maternity photo shoot, a ritual that moms do to celebrate and document their pregnancies.  How would these pictures affect me if for some reason, my baby was born sleeping?  Would there be a baby shower?  What would I do with the gifts if for some reason....   With my prayer warriors by my side, though, I anxiously approached my due date. 

Loving Brayleigh - Exodus Photography
Brayleigh arrived a little over a month early.  I saw her briefly and she was taken away to be further examined and placed on equipment to help her immature lungs function.  As I lay on the operating table, I still had no idea of what her status was. Did she really have Trisomy 18? Was it a mistake? Was she healthy?  I heard her cry, but I still didn't know. I just recall Chris whispering in my ear how beautiful she was.  At that moment, I had decided that regardless of what the doctors found, regardless of how long she would be with us, regardless of any abnormalities or physical deformities, I was going to love her.  She was my baby despite the fact that I was told to start the grieving process while I was still pregnant.  With every strong kick and every jerking turn, though, I knew my baby would be strong and would be a survivor.

For the first few days, I had little contact with her.  She lived within a large plastic isolet in the neonatal intensive care unit at the hospital.  I would go visit her from my own hospital room, but picking her up and holding her in my arms was a huge ordeal.  She was connected to wires from every end, and I was told that it would be "stressful" on her to move her in and out of the bed.  I demanded, though, to do motherly things - like change her diaper inside of the isolet, put her clothes on and wash her face.  It was all that I could do to be a mother to her.  And of course, I loved her unconditionally from the outside of that plastic box.  I knew that she could hear me and feel my presence so I talked and sang to her every chance that I could.  When I was able to hold her, she would settle in my arms comfortably, so I knew that she was aware of who I was.

Life with Brayleigh over the past seven months (since her days in the NICU) has had its ups and downs.  Yes, it has been seven months and she has far exceeded anyone's expectations.  Things have somewhat stabilized and normalized, and I am finally settling into the new norm after multiple hospital stays, starts and setbacks and watching her evolve as a baby living with a life-threatening genetic disorder.  As a mother, though, you just want the best for your children, and the greatest joy over the past seven months is knowing that I have fought for her, been a voice for her, shared her story to inspire others and created an awareness around her condition.

God has blessed me to be the mother of an angel for whatever reason. I often ask "what do you want me to do with this charge?" instead of asking "why this has happened to me?" I still wonder every day if I am doing what He wants me to do with this big responsibility.  What I am certain about is that Brayleigh has, undoubtedly, changed me as a mother, and I cannot imagine life without her just the way she is.

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