Our Story

I want to share with you is the story of how our journey began with my daughter. Whether I am sharing with a friend or acquaintance or with a fellow mother of a child with Down Syndrome, I am always asked the simple question- “Did you know?” They want to know the story of how I came to find out that Charlie has Down Syndrome. To hear this story is to better understand who I am as a mother and the journey on which the Lord is leading me. So let me share my story with you.

After four years of marriage we were ready- ready to start our family. We had our home in order, our finances ready and our hearts were full as we imagined a little bundle in our arms to kiss and cuddle.  We got pregnant right away- my husband and I joke that all it takes is a conversation about getting pregnant and there we are- pregnancy test showing the undeniable words that I so love- “PREGNANT.”

We found out we were pregnant with Charlotte just before Christmas, so we had the perfect idea as to how to reveal to our family the big news. I had shirt made with the words “Early Christmas Present” perfectly stretched across my belly. Our parents were overjoyed. We all celebrated that Christmas, full of excitement and anticipation for the little bundle to arrive just nine months later.

We began our prenatal visits. Everything was routine and typical in every way. Each visit to the doctor proved simple yet exciting.  The months passed one after the other, and the due date grew closer and closer, and I grew bigger and bigger.

But everything changed when one of our planned, routine check-ups had not so planned results.  I sat in the ultrasound room, legs propped up and eyes locked on the monitor screen. As the technician ran the camera over my belly checking each organ and taking each measurement, there was a pause. A pause of measuring, remeasuring, and remeasuring one more time. They had noticed that our baby had shorter arm and leg bones than what should be expected at this point in my pregnancy.  I was quickly directed to the Maternal Medicine area of the hospital.  Honestly, at this point not one concern entered my mind. With this being our first child, I didn’t know if visits to this area of the hospital were normal. I thought to myself, I have shorter legs so I must have passed it along to my baby. She must be taking after her momma.  I didn’t expect much of anything.  Boy was I wrong. 

I was led into a room where I sat across from a doctor who discussed with me the ultrasound findings and before I knew it he asked, “Do you know much about Down Syndrome?” Do I know much about Down Syndrome? Images of a boy who had Down Syndrome that was in my high school came to mind, pictures I had seen from my genetics book from junior year- outside of that, I wasn’t able to fill in the blanks at all.  I quickly replied, “Somewhat…” Why was he asking me if I knew about Down Syndrome?

He quickly pulled out a booklet that had pictures of chromosomes and began to tell me the details of this genetic disorder. I looked across the white printed pages with pictures of all the groupings of chromosomes, each perfectly paired except for the 21st pair, which was a unique set of three.  I can’t remember much of anything he said after his initial question. He asked me about further testing to which I declined. Every mother is different but for me, I had heard stories of false positives and possible dangers for the fetus. I opted for no testing, which meant... waiting. Waiting for months to see if our daughter would be born healthy or with a life altering disability. Waiting for months to try and take every thought captive so that my pregnancy wouldn’t be flooded with fear and worry of the unknown. Waiting for months to pray and have conversations with my husband as to whether or not we should share with family about the possibility of having a child that would be different from anyone else in our family. 

I walked out of the hospital and to my car, not knowing what to think, how to respond, if I should call my husband or simply let what just happened sink in.  My survival instinct kicked in. So what did I do as soon as I sat in my car and shut the door? I prayed and I cried.

How could this be? What did I do wrong? Have I not been taking care of myself? Is there something wrong with me or my husband? Do I even let my mind go there? Do I pray and have faith that our baby will be totally healthy? Do I tell my family? Will they worry? What if the baby is totally healthy and I get worried over nothing? What am I supposed to feel? What do I do now?

There are some mothers who find out about their child’s diagnosis before they deliver, some after, but I think one thing for us to know is that in the moment when we first discover our child’s diagnosis, there is no right or wrong way to feel. Some mothers feel guilt, some feel anger, some feel despair, while others feel nothing.  It’s not about the feeling, but what we choose to do in the moments, days, months, years that follow.

In the months to follow we opted for ultrasounds every 3 weeks to continue to monitor our little girl’s progress. We had decided on the name Charlotte Joy- we prayed and believed that regardless of her diagnosis, she would be a strong little woman, filled with joy.  We chose to tell our parents and a few others about the possibility of Down Syndrome, so they could pray for a healthy baby as well.  The unknown was so difficult. We weren’t sure if we needed to prepare and plan for a special needs child, or if she would be totally healthy and any worry would be for nothing.  We prayed, and prayed and prayed. That was all we could do and with every ounce of faith we believed God would give us a healthy baby.

On August tenth, week thirty-eight came, and baby Charlotte was ready to make her debut. After an eleven-hour labor, we held her in our arms for the first time.  It was such a beautiful moment holding her and realizing that we were beginning our journey of parenthood. I remember the nurse laying her on my chest and looking at her sweet, precious face. I was overwhelmed with love for this little person that lived in my belly for all those months. I looked into her blue eyes and cried as I said, “We’ve been waiting for you! You are so beautiful! Momma loves you.” My husband and I cried and we were overwhelmed that we were officially parents; this was the start of our family.  Just moments after the birth, I turned to the doctor and asked, “Is she okay?” And the doctor replied, “Yes she is totally healthy.” Relief swelled up instantly. After months of prayer and the unknown, we had a healthy baby. We rejoiced and couldn’t believe how beautiful she was.

But as baby Charlotte and I were recovering in the hospital, the status of our little girl quickly changed. The pediatrician came in to do his initial check up on Charlie.  He looked her over, head to toe- listening to her heart, checking her reflexes, examining every sweet, precious feature.  After completing the exam, he left the room, only to come back a few minutes later. He wanted to talk.  We came to find out that he and another doctor were divided over some features- her lower set ears, the large space between her first and second toe, her almond shaped eyes, and her struggle to nurse.  They said that they needed to do a blood test to be certain. They wanted to do a blood test for Down Syndrome.  The relief that we felt when she was born immediately vanished. We were back to the unknown.  So what did we do? We prayed. We prayed. We prayed.

I will never forget when my husband got the call 2 days later. The results were in. My husband took the call on his cell phone in our bedroom. I had followed him up the stairs with Charlie in my arms. He was listening to the pediatrician intently, and I could tell by the look on his face, he was given the result. ”Does she have it?” I whispered. He nodded. 

My mind went blank. My heart sunk. My legs gave way underneath. I was physically overcome in a way I had never experienced before.  I felt as if the life had been sucked out of me. A heaviness overtook me in this single moment.  I fell into my husband’s arms and he led me to the bed. He gently cradled Charlie and I in his lap.

 I needed only one thing… for God to speak.

There are times in our lives when we are facing such a storm, such a valley, such a heaviness, that nothing and no one can say anything that can change what we are facing.  When I was first hit with the news that Charlie had Down Syndrome, I didn’t know what to do or who to turn to. My husband and I talked to each other, but we couldn’t offer much comfort to one another since it was new territory to us both. We were just trying to keep our heads above water.  I reached out to my family. Their words and prayers were heart felt and kind, but I needed something more.

I dove into books, articles, and researched on online. I wanted to know what this diagnosis meant, what other families were experiencing, and wanted to educate myself. Maybe if Charlie’s medical condition was something I better understood, I wouldn’t feel so overwhelmed. I was wrong. The further I researched and read, the more discouraged I became. I would find myself studying the health risks and probability of pains that no child should ever experience, and became filled with fear. What if Charlotte’s thyroid failed? What if she had to have heart surgery? What if she gets leukemia? This avenue only proved to sink my heart even deeper. Don’t get me wrong, research and educating yourself as a parent is so important when it comes to helping our children thrive, but at this point in my journey, it wasn’t helping; not one bit.

My mother knew a woman who had raised a son with Downs and was willing to talk with me on the phone if I needed someone to be there at these beginning stages.  I remember calling her one afternoon. I layed on my bed and dialed her phone number. A gentle voice answered on the other side of the line. I introduced myself and thanked her for offering to speak with me. In the moments to follow, I poured out my heart to a woman I had never met but I had felt more close to than anyone else I had ever known.  For the first time since all this began, here was a mother who knew and felt exactly what I was experiencing.  I was finally connecting with someone who understood every emotion and thought I was wrestling with in my mind.  Our conversation lifted a great deal of the heaviness, but still I needed something more.

You know when you get to that point where you are totally at the end of yourself, and if God doesn’t speak, you’re afraid that the heaviness might overcome you entirely? I was there.  

As a new mother my one of my daily goals was to bathe once a day; funny how a goal so simple can be almost impossible when you are caring for your new little bundle.  Charlie was just a few weeks old when I stepped into the shower one day, a few moments alone where I could have some face-to-face time with God. I stood in the shower feeling totally and completely numb. The water washed over me and I felt the heaviness and emptiness simultaneously. “God, I need you to speak.” Such a simple prayer, but it was an honest one. I couldn’t utter anything else. And I didn’t need to.

This was the moment; the moment where I was at the end of myself; the moment that changed everything.  I needed God to say something. As good as my husband, my family, or even another mother who had been in my shoes could be in this season, no one was making a difference.  Then God said, “I chose you to be her mom.”

A peace came over me. The heaviness and emptiness left just as quickly as they came.  These words stirred so sweetly in my spirit. I was chosen to be her mom. Out of all the mothers in the world, I was chosen to be Charlie’s mom. I am the lucky one. I GET to be her mom. Since before time began, I have been God’s plan for Charlie’s life and she has been God’s plan for mine. I was chosen for Charlie. I was overwhelmed with a sense of pride and honor at the thought to be chosen by God to love and care for Charlie. Life came back into my bones. Energy surged in my entire body. I felt sincere joy for being called to be this precious baby’s mother. I felt that God chose Lucas and I knowing that we could be trusted with Charlie, both with her abilities and disabilities.