Monthly Archives: April 2011

Bearing a Walk of Sacrifice

Below are the remarks which would have been given by me at 10 AM today at the Highlands March of Dimes Walk. However due to the recent catastrophe this event has been cancelled. Nonetheless I felt that first-timers, parents, friends and families of the cause needed to know what they were donating money towards on this and future March of Dimes Walks. Please feel free to share and comment. Enjoy…

No Woman No Cry- Bob Marley

Good morning, I would like to thank the corporate sponsors, chair members and especially Nikki Hicks for organizing a heart mellowing experience and allowing me the opportunity to speak to you all today. Many thanks to them and friends who made this event a success.

They say that behind every great man there will always be greater women behind him. Two of the women are at home due to doctor’s orders. Nikki, another great woman first approached me four months ago asking if we were willing to be the ambassador family. This was a huge honor, but my answer would become dependent upon the progress made with Gracie in the NICU. Gracie at the time was still dealing with a rollercoaster of health issues and I feared that the weight of having to tell an unfinished story would be too much for me to bear.

Today I can turn the page on one of the scariest chapters of my life because of the March of Dimes. Due to their research and resources, we and Gracie’s specialists have access to information and resources when she is faced with adverse health conditions. We can safely say that Gracie is getting closer to normal. She is almost 9 lbs and a heartbreaker. She is the first thing I see when I come home, because she sleeps on my chest she is the first and last thing I see when I open and close my eyes, and the last thought I have when I drop her off before work in the morning. I can not put a price tag on those experiences, but what I can say is that the March of Dimes painted the painful portrait that everything that lives has to die, but not everyone gets a chance to live a life.

To begin this story, Gracie wasn’t an easy pregnancy. Early on, we had to go through quad testing due to the presence of life threatening genetic markers. After the genetic consultation test, we found ourselves in the ultrasound room. The tech and doctor examined and took measurements and gave us the reassured 99.7 percent confirmation that the quad test was a false positive. This was also when we later on found out the gender. It was a baby female. For those who know me I immediately fast forwarded to prom and the fact that I will have to pay for a pointless wedding because no man in the world would be good enough for my daughter. This was accompanied by me hearing my subconscious making “cha-chinging” sounds with all the costs associated with raising a daughter. We went home and began making preparations for Gracie’s arrival into this world.

In the early morning hours of October 18th Ashleigh was experiencing what she though was a urinary tract infection. We went to the emergency room and that was when we found out Gracie was in the breach position at Bristol Regional everyone kept apologizing to us with the sentence, “I am so sorry!” Everyone kept reassuring Ashleigh that she was going to be ok. No one dared to mention anything about the baby. Til’ this day, the word “sorry” chills my soul.  Due to the nature of extreme prematurity, Gracie couldn’t be born at Bristol; we had to be moved to Johnson City. We called my mother in law and told her to meet us at Johnson City Medical. We were transported with a doctor and nurse from Bristol to Johnson City, while I sat in the front of the ambulance. We arrived to a prepped hospital room.  Doctors, nurses and staff members began asking us the same questions while they poked, prodded and inspected a tearful new-to-be mother. A wave of panic came when the OR surgeon checked Ashleigh and said that the baby was coming. The longest second came when she asked us if we wanted them to do everything they could do for this baby. I looked to Ashleigh and she said yes. The new to be mother was rolled into surgery as my mother-in- law and I stood outside the OR room in the women’s center. Everyone was running into that room, and you could hear nurses say that they were still waiting for the neonatologist. 35 minutes later, nurses came out and told us the surgery went well and that the baby was breathing. Later Gracie was rolled out to me and my mother in law in a clear box flanked by nurses and specialists. She was on oxygen support and had breathing support from a bag.   

She was born on October 18th weighing 23 ozs and was less than 12 inches long. I immediately asked if she was okay, and they said she was fine and that we would be able to see God in a few hours in the NICU. We were asked to wait in the hospital room for the surgeons, neonatologist and new mother.

The OR surgeon was a woman of Eurasian descent. She came in and told us that the surgery was perfect and explained how she had to do a classical c-section by filleting the uterus. Ashleigh could not attempt future pregnancies for at least 18 months and all pregnancies would have to be delivered at 36 weeks translating into potential future NICU experiences. She explained that the baby was extremely premature and that she couldn’t comment on something outside of the realm of her expertise.

The attending physician came in and spoke about the surgery and said that they don’t usually attempt to deliver prior to 24 weeks and that there would be some serious long term health complications. Later on, a neonatalogist came in and gave Gracie a 50/50 shot to live past the first 48 hours. This man later became Ashleigh’s male confidant in the NICU and probably Gracie’s best advocate and fan. He warned us that the first 24 hours were critical and for the time being Gracie was on full life support. He told us to visit in a few hours. He asked us to be positive and left us with a side note depicting research articles stating that 20 percent of the 24 weekers overcome and live healthy normal lives. His departure left me in a state of confusion.

I looked out from the room window and saw the sunrise, while I ate a banana.  I couldn’t remember the last time I watched a beautiful sunrise.  Deep down a flood of emotions brewed. When I was about 7, my sister was born premature as a twin. My brother was a still birth. I remembered sitting through the funeral arrangements and the funeral as my mother wept. I now understood what she was feeling. I heard a voice in my soul telling me to “man up.” I asked my mother in law if we needed to make secret arrangements for the baby. She suggested that we wait.  

When they wheeled Ashleigh back in, she immediately asked about Gracie. I looked in her eyes and gave her a vague response of she’s going to be ok. She looked at her mom for specifics who gave her a touch and go answer. No one was going to give her numbers. A few hours after Ashleigh was stable, I walked searching for Gracie. A nurse saw my lost soul and she walked me up to the NICU and walked in with me. Walking into the NICU for the first time was emotional. A tear comes to your eye for all that starts there and a tear comes to your eye when you leave there. The battle of life and death is measured in millimeters, centimeters, milliliters and grams rather than inches, ounces and pounds. I met Gracie in a corner attached to machines, billi lights while receiving the first of many pints of blood. A nurse greeted me and told me she would be back.

The neonatologist came and spoke to me and told me that Gracie was improving, but time would be either our enemy or our friend.  When the nurse came back she told me that I was lucky that it was a girl because women are stubborn from the start.

She then expressed the life saving potential behind breast milk and asked me to sign Gracie’s life away to the NICU via paperwork. This paperwork ensured that Gracie has only one biological mother and father, but what seemed like a million midwives, surrogates, teachers and support staff who transformed God into Gracie.

For the next 115 days, we painstakingly watched our daughter’s dips, rises, turns and pitfalls.  We watched our daughter grow inside a plastic box while others around us were being discharged or had passed away. We were sandwiched between those who were extremely blessed and those who felt like they were cursed.  

Gracie endured endless surgeries, sicknesses and procedures all resulting from her prematurity.  We desperately attempted to figure out how to delicately bond with her. It took us multiple weeks to develop the courage to bond with her through touch and sound. We read to her everyday hoping that it would give her a reason to fight for her life. The majority of people interpret this experience as a curse. I interpreted it as a teachable moment in life. It is where we learned how to do kangaroo care, where we learned how to do physical therapy with her, feed her, and show her we were worth her sticking around, while sharing her with the world. Both of our families and friends wanted us to have children, but we never felt completely ready until now.

The NICU is the proving ground of whether parents are strong enough to raise a preemie. It teaches you how to function with minimal sleep and multiple distractions, become an emotional weathered rock, fight your fears as a parent and individual, patience, and last but not least offer your hand to those in appreciation to those when so many others turned theirs away due to personal judgment or selfishness.  

On countless occasions, when Ashleigh stepped out of the room I would open up Gracie’s incubator and whisper to her that I needed her typical female stubbornness to come through because her pedigree has zero quitters. She needed to let me earn the role of fatherhood and her friend. I promised to give her a better life than I received while providing endless amounts of fatherly love filled with tender hugs and smiles while remaining fair.

Six days ago, I came across a story which captured my heart. It was the story of Avery Grace, daughter of Becky and Eric Coley of Marion,Virginia. Avery was admitted the day Gracie was discharged.

Three days after she was admitted she passed from genetic complications resulting from a fatal form of dwarfism. Her parents gave her back to God as they ended her suffering. This is such a difficult and selfless act of faith. I have been a witness to that experience with one of Gracie’s NICU mates.

I watched as a mother of triplets collapsed three feet from her daughter’s incubator and released a blood gurgling cry. The father did his best to comfort her. This was followed by nurses and multiple privacy screen dividers covering this intimate moment. We promptly left to give the mother her space and when we returned the preemies stat monitor simply stated the word “discharged.” The defeated nurses were all staring at the ground or outside.  In between the dividers, I caught a glimpse of the parents holding their daughter. I gave Ashleigh a look which said “that easily could have been us.” The NICU experience brought us closer to the Coley through blogging.

As Avery’s courageous mother Becky Coley blogs about her pain, suffering bleeds through her writing. Each time she blogs, it seems as if she is healing. As I stand here today, I can tell her that I can feel the pain she feels daily because I still relive it every time Gracie does something spectacular like pass gas while smiling. After reading her blog, Ashleigh and I both see Avery Grace in Gracie when she sleeps. It is my wish that the Coles find peace within themselves like I did.  

The one question I saw on her blog and never had a chance to address on mine was “Why me? Why us? Why Grace? These are the hardest questions to answer for anyone who has experienced complete loss.  

On my desk is a frame which Ashleigh gave me. It is not a picture of my family or a beautiful portrait. In it lies a scripture which I govern by.  It is Romans 12, also known as “The Living Sacrifice.”

I hope that everyone can take a small nugget from my response below because there is common ground amongst the family and friends of preemie parents and those who were affected by the storm.

God is a lot like love, we spend our lives chasing it and hoping that we can catch it. But what we fail to notice usually is that He has always been staring or sitting in front of us waiting for us to offer Him an example of a living sacrifice. In my opinion, religion was designed to interpret God’s will and science is man’s attempt at figuring out His intelligent design.  Both have a delinquent flaw and that is man. True faith doesn’t require us to have all the answers because faith isn’t about being omniscient or even being clandestine.  Faith is something which can’t be empirically proven or disproven. A person who is true in faith must acknowledge that there is no empirical proof  that there is a God.  Each of us were designed as part of His image. If we all were replicated in equal shapes and talents then none of us would be impressive and in turn be boring. If you’re only seeking His face through the promise of heaven or the threat of hell then you are incorrectly motivated. He asks that you transform yourself by sacrificing a piece of yourself to Him. As we each have experienced a degree of loss within our lives, I encourage you to extend your commitment to service outside of this cause. It can be as simple as something like a donation of monetary value, time, skill, hot meal, prayer, or even a pint of blood. These are all living sacrifices.

As I was putting the finishing touches on this speech, I received an email from Gracie’s sitter aka “Mammie” that her grandchildren attended a MOD walk last year and collected dimes, nickels and quarters.  There was a  total of five dollars which is a significant amount for children and they wanted to give it towards Gracie’s cause. The March of Dimes not only taught these kids a valuable lesson about giving, but  the importance of offering babies a healthy chance at life. These kids could have easily spent this money on candy or toys, but decided on a greater cause due to great parenting.  They share the same amount of generosity as my alma mater and frat brothers have in the recent days and this my dear friends has brought joy, pride and tears to my heart. The March of Dimes ensures that children can be some of our greatest teachers.

Thank you and God bless you all…

The Story of Avery Grace