Survive or Thrive...The choice is Mine

Written by Guest Contributor and amazing mama, Amy Harrill

A canopy bed, a white bench with pretty pillows, ruffle curtains, a playhouse kitchen, a vanity, crowns from many pageants won, books, baby dolls and a closet full of pretty dresses. This is what I remember in my room as a child. I would spend hours playing in my room, pretending to be a mommy and wife. I also spent hours pretending I could sing. I am literally laughing to myself as I write this because I just knew singing was out of the question. I did daydream of how I wanted my children to look, what we would talk about, what they would become and the person I would be as a mommy and wife. 

Fast forward to adulthood and I was eleven weeks along with baby number two. My routine Maternal Fetal Medicine appointment was due. You see, I am considered of “elder” age in pregnancy years. I often say I know I am not “elder” but my eggs are slightly more prune than plump. (I hope that made you chuckle.) I was super nervous going into this appointment. I had my husband and toddler in tow and I knew in my heart something was going to be “wrong” with my baby. My fear was to not be able to see or hear our baby’s heartbeat. I have never miscarried and my heart breaks for the mothers that have lost children at any stage of life. 

As we entered the office we were introduced to our technician who would be performing the ultrasound. I grabbed my husband’s hand as she began the exam and he squeezed tightly. I was waiting with bated breath to hear the heartbeat and there it was, strong and steady! I cried tears of joy as I exhaled. As quick as that breath left my body, a heaviness escorted by peace came over the room as I watched and listened as the lovely medical professional became uncomfortable and grew quiet. I asked her what she was observing on the monitor. She said only a few words about the lymphatic fluid that was sitting behind my baby’s neck. The fluid looked like a pillow her head was resting on. She quickly excused herself and within minutes we were scooped up and moved to another room to speak to the doctor. My heart was pounding, my breath was heavy, and I immediately began to lean in to my Unseen Companion’s peace and wisdom. Unfortunately, there was another unseen companion that was always nipping at my heels. She had made herself at home in my life at the early age of five and had never left. FEAR. Fear was always reaching for me and hassling me. 

When I was five-years-old my baby sister, Kathryn, came into the world. She did not enter in the peaceful, joyful way most babies arrive. She arrived through the hands of a team that allowed a nurse who was heavily intoxicated into the delivery room. My sister would be pronounced dead 15 minutes later. However, she lives to this day. Kathryn began her life with severe trauma which created a lifelong journey of special needs that haunted me my entire life. Her life has never been easy and honestly, my sister has suffered a great deal in her 35 years here on earth. At the age of five, FEAR became a familiar presence. Facing my own child’s prognosis I began to feel fear in a way I never had before. Fear that my child would suffer. Fear that my oldest child would forever find her life flipped upside down. Fear my family would become second to the “special needs” of this child. I feared these things because I lived them. It wasn’t how we needed to live; it was the way my parents chose to live. They never grew out of the “survival” phase of an unexpected curve ball that life had thrown at them. I love my parents and they loved us with fierce passion that knew no borders, but special needs blindsided them. I never wanted to be God-smacked with a curve ball like that one. 

I had no idea what I was going to hear as we sat in room number two waiting to speak to our MFM Doctor. I knew I was about to be led where my “trust was without borders”.  I knew this was Divinity clashing with my humanity. I could feel the physical wrestle in my body. I had bursts of rapid heart rate and moments of calm. It was in those moments that I would grab my husband’s hand. I wanted to remain calm for my two-year-old who was sitting so still between us. I knew she could sense the silent screams coming from my soul. 

Our doctor came in, shook our hands, and asked me to lie down. He then proceeded to take the same pictures the technician had completed in the moments prior. Without emotion and completely medical, some would say stoic, he began to educate us on what he was seeing. The doctor kept saying, “Trisomy, Trisomy 18 or 21, chromosome abnormality”.  Seriously, like a cow at a new gate, wide eyed and shocked, I was trying to listen. The doctor explained the amount of fluid which had collected behind our baby’s neck was so high that we needed to run some tests now to confirm his findings. He believed there was a 70% chance our baby would have an abnormality of some kind. 

I was literally in and out of the moment with my own thoughts and visions. My mind was racing with what this prognosis could mean. I finally gained the courage to ask what he was referring to after he was finished speaking to us using medial jargon. “Down syndrome” and he continued with, “and I don’t just think so, I am certain”. He talked about other things that could be happening as well because of the high volume of fluid. I had heard of the word“Trisomy” but had no idea Down syndrome was Trisomy 21.

“I had heard of the word, “Trisomy” but had no idea Down syndrome was Trisomy 21. ”

You know in the movies when the character is faced with life changing information, often they will take you on a rollercoaster recount of lots of events that led up to that one moment. This is the best way I can describe the next few seconds of my life. I watched my childhood unfold and this time the main characters were my first-born and my husband, Jason. Tears, hot tears, big tears, and heavy sobs began to pour out of me. “Breathe,” is all that could escape from my mouth. I immediately searched Jason, his body language, his face, his eyes, and saw his lip quiver and eyes well up as he was standing in shock clutching our daughter. 

Four years earlier we had walked hand-in-hand on a beach in North Carolina talking about what we would do if we were ever faced with this moment. I wanted to know if what he told me when we were dating would be his first response. I watched Presley, my toddler, dart her gaze from me to him and back again. She immediately threw her arms around her daddy’s neck and held on for dear life. We all just clung to one another as though a part of us was gone. Forever.

The doctor excused himself while he was reassuring us this was nothing we had done or could have prevented. “I knew it, I knew it, I knew it” was what fell out of my mouth as we stood alone in the room. Suddenly, my tears stopped and peace that was as tangible as the keyboard under my fingers right now, rushed in.  Jason looked at me and said, “This is our baby and we need to know how to best tend to her.” This was the response I was waiting for. More importantly, hoping for. When life-altering news is given and your dreams seem out of reach, you wait and search for your spouse’s response. You wonder: Will they retreat? Will they freeze? Will they give up? Will they leave?

When the doctor returned we agreed to have a CVS test done that would confirm or deny the doctor’s findings. This test has some high risks and it also has a 99% accuracy rating. We agreed to this testing for one reason; clarity. We needed to know how to care for our child in the womb and once born. When the testing process was done the doctor asked, “Do you need to know a time frame for all of your options?” Jason responded to the doctor, “This is our daughter first and we have no intention of terminating.” Relief rushed over me because Jason answered all of my internal questions with just that one statement to our doctor.

For the next 24 hours I walked and talked with A Power that I knew had formed this baby, loved us both fiercely, and would work anything and everything out to our good. He had already promised this and I was putting those promises to the test. If I wasn’t walking, I was on my knees or lying on the floor clutching my belly. When I cried it was so deep I could feel my womb as my stomach would contract with pain that came from letting go. Presley, my two-year-old, is one of the most loving people I know. She would bring me tissues and wipe my face. She would sing with me. She would walk with me and if we weren’t doing these things together we were doing her things together. If I wasn’t with Presley, then I was wrapped up with my husband. 

The doctor told us we should have results from the CVS test within a day. During bath time, while Presley played happily in the tub, the phone rang. The voice on the other end was gentle, tender, and caring. She didn’t beat around the bush. She said, “Your test is positive for Trisomy 21.” Hoping for a different answer I asked, “That is Down syndrome, right?" She said, “Yes, yes it is. Have you been informed of your options?” I responded, “Yes, we are going to move forward with the pregnancy.” With a smile in her voice she asked, “Would you like to know the sex?” and I said, “Yes.” Enthusiastically she exclaimed, “It’s a girl!  Congratulations!” I dropped to my knees in my daughter’s bedroom and began sobbing and then we hung up. A picture ran through my mind of a beautiful little girl playing with her sister on the same floor where I was prostrate. She had almond shaped eyes and a big smile. I was jolted out of the moment with a little voice coming from the bathroom saying, “Mommy crying? Awe Mommy. Mommy tissue?” Pulling myself to my feet, I went to the tub and Presley stood and hugged me as I held her tight with all my strength. The next call was to Jason and only a silent cry was heard. With a gentle urgency he said, “I’m coming home now.”   

Two weeks later we returned to the MFM and learned our unborn daughter would be in the 50% to have a heart defect. Her heart would not have four chambers or even two; just an archaic organ that would never fully form on its own. The safest place for her was in my womb. One day shortly after this appointment my husband came home and shared with me that our baby needed a name. He felt she needed a name in case she gained her wings. The name “Abigail” came to mind as he was praying. Jason knew “Abigail” needed to be her name.  After some research we found the meaning of her name was “the father’s joy.”

“Abigail Grace became the name of the fourth member of our family. Our love for her plunged deeper and attachment grew stronger. ”

Abigail Grace became the name of the fourth member of our family. Our love for her plunged deeper and attachment grew stronger. 

The next 6 months were full of moments of solitude where only silent cries while holding my womb tightly went on for hours at a time. I was always quietly reflecting on God’s promises for my unborn daughter, my first-born, and my family.  As the months passed my silent cries turned to spoken prayers with tears and those spoken prayers turned into tearful but confident professions of faith. 

I could say I was grieving for my daughter or grieving for the loss of what I thought could be. I honestly did say that, but I now know I wasn’t grieving for my daughter. I was grieving because I didn’t think I could give her the life I wanted her to share with our existing family unit. I didn’t think I could be the mommy she deserved. I didn’t think I could give Presley and Jason the mommy and wife which I had committed to become when our family was created. During my time of solitude, I was taught I could be the mommy for my daughter’s that I desired to be but I had to decide if I wanted to thrive or survive. Was I willing to change? 

Shifting one’s paradigm requires change and for me change is hard. The tears came due to stripping away what I thought I knew, what I thought I wanted, and what I thought I didn’t want. I also cried because I was letting go of a familiar confidant that I had begun a relationship with in the quiet of my pretty room as a child. My constant companion, FEAR.  She tried to tell me I would never meet this precious Abigail, hold her or grow with her.  She would try to convince me that she would suffer. She would torment me with ideas that I would lose her shortly after birth. However, I wanted to be a different person for my children. I wanted to thrive, with my chromosomal cutie, not merely survive.

On April 10, 2017 Abigail Grace Harrill entered the world and was as close to perfect as a child with a heart defect could be. I have only been up close and personal with Down syndrome for six months. My heart cry is that you would know that Down syndrome has not overtaken our life. It has added a few more items to my to do list, but, as with any new responsibility, we have adapted and created a new normal. The last six months have been much harder than the six months prior. Abigail’s cardiac complications were more serious than we had anticipated. This is when I began to grieve for my baby. My tears continued and were now for the pain her tiny body would be put through during open-heart surgery. I grieved for her struggle to get the nutrition her body so desperately craved. I grieved because of the struggle it takes for her to do what other babies her age seem to be easily mastering. I cry because I am so happy she is on the mend and growing strong. Abigail is politely persistent and rising to our expectations. 

I like to be educated about as many things as possible but Down syndrome is not an easy study. It’s quite complicated because it affects all individuals differently. So, the answers to my questions are not cut and dry. However, most of the markers for DS are consistent. I have restricted my reading to a “need to know” basis. Nothing is pressing and I am learning to trust my Spirit Guide. Yes, you read that correctly… I’m not reading all there is, because one person’s DS experience can be different from Abigail’s DS experience. We are meeting more and more friends with children who also have that little something extra and this has been most helpful for our family. Support, education, and friendship have played a vital role so far. It takes a tribe to raise any child and a tribe that understands our “special needs” as a family is just as important. 

“Down syndrome does not replace dreams with nightmares and it does not make life hard... Down syndrome did not rob Abigail of a “normal” life. Abigail Grace is not a victim... Down syndrome is the name of her diagnosis but it is not her identity. ”

I know this experience sounds like it’s “all about me” and, honestly, it was about the person I desired to become versus the one I was being. I have realized Down syndrome does not create “problems.” Down syndrome does not replace dreams with nightmares and it does not make life hard. I can choose to do all that by trying to make situations and experiences fit into molds that I think are best for my life and hers. Down syndrome did not rob Abigail of a “normal” life. Abigail Grace is not a victim. Neither am I because I was and am willing to go through the process of change. Beyond that I have found Down syndrome is the name of her diagnosis but it is not her identity. Abigail’s identity includes power and love and she is successfully living up to her own persona.  

Survival is a necessary step in life, but it’s not meant to be the resting place of our lives. Ultimately, if I had decided to camp at the shore of survival then I would be making the choice to be a victim. I did not want to succumb to the mentality that, “Everything is happening to me”. Down syndrome didn’t happen to us. It just happened. I believe I can create the possibilities and Abigail will decide when to take them and what to do with them. She can do that. She can make decisions. She can choose the life she wants to lead. As her mom, her advocate, and her number one fan, I just have to show her the opportunities. 

We are thriving as a family because this is our choice. We are allowing ideas much bigger than our own to shape our futures.  My daydream was sweet, but our reality is much, much sweeter. Our reality is bountiful and exciting!