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.

Monday, May 4, 2015

Stepping into Spring

As spring sprung, the dogwoods reared their heads and Georgians were showered with yellow-greenish pollen for the past several weeks.  At the same time, Brayleigh turned six months old, and the meaning of her journey took on a whole new dimension.  In essence, we had previously planted our own seeds, and last month was definitely the time to see our story manifest and grow.

The month began with a wonderful news segment produced by the medical team at Fox 5 Atlanta on Brayleigh's life with Trisomy 18.  Medical correspondent, Beth Galvin, featured the challenges that babies have with the disorder and the ways in which Brayleigh is thriving through it all. The story was so fittingly labeled, "Loving Brayleigh," because in the midst of the ups and downs, the medical challenges that force her into the hospital or the joys of watching her laugh at her big sister, through it all we are just loving our precious girl.  The news story can be found here: 
"Loving Brayleigh" on My Fox 5 Atlanta

Since the Fox story aired, I have been overwhelmed with people reaching out to me for inspiration, strength and even just to keep me encouraged to hang in there and continue loving our baby girl. All of these moms have children with a Trisomy disorder, many of whom are thriving as older children. Some of the moms only had the opportunity to hold their little ones for a few days or even hours. I have exchanged emails and spoken to a few of them, and it is so wonderful to know that a community has been created for Trisomy parents to share their experiences with one another. The story was so big that it even made it to the Trisomy 18 Foundation's Facebook page, which has over 45,000 followers.  Just days later, the Georgia Department of Public Health posted a story on Brayleigh's journey as part of the March of Dimes' March for Babies Walk.  The story can be found here:  Dept of Public Health March for Babies Article

Brayleigh also had the opportunity to enjoy an Easter brunch outing with the family at the posh Commerce Club in downtown Atlanta's 191 Peachtree building.  It was her first time out of the house socially, and not for a doctor's appointment.  It was a huge milestone for our family, and we had the chance to "show her off" to familiar faces and those we met. 
We also built a successful fundraising team for the March for Babies walk in support of Team Brayleigh.  Wearing custom tee shirts that displayed "Her Story and Her Footprints," we had a small army of supporters who proudly walked 3 miles through the streets of downtown Atlanta during the threat of thunderstorms and tornadoes in support of our baby girl. God was certainly moving last month. The conversation has begun. Trisomy disorders do not have to be a family secret. These are real babies with a real message of God's love regardless of how long we get to hold them in our arms. I never knew what Brayleigh's journey would ultimately mean as the future was so uncertain, but what I do know is that God has His hands all in it!

The month, though, was not all roses.  Brayleigh had to have emergency surgery on April 13th for Meckel's diverticulitis and intussesception, or basically a blockage in her small instestines that was preventing her bowels from passing through. After noticing what appeared to be fairly extreme gastrointestinal issues, she ended up at the children's hospital for what would turn into a  five-day stay. Apparently, a small percentage of the general population is diagnosed with this condition, and often times it is discovered by the age of two. Brayleigh recovered well from surgery.  She was extubated shortly after the procedure and despite a little fussiness from time to time, her overall spirits were pretty upbeat. For the first time ever, she was moved from the critical care unit and onto the regular "floor" where children of all ages had everything from a broken leg to surgery to repair their vocal chords. 
Brayleigh somehow managed to prove that she was more stable and did not require the "around-the-clock" care, although I quite honestly missed the attention from the pediatric intensive care unit.

We were elated, nonetheless, to bring our baby girl home. We no longer had to worry about hospital shifts, dining options and shuffling big sister from place to place while we made sure Brayleigh was ok.

God is obviously working miracles through this little girl, and Chris and I as parents are here to be her voice.  We clearly moved waves this past month in trying to bring awareness to Trisomy 18. In our own way, we are watching our seeds bloom and are fortunate that our gift can be a blessing to others.