Down Syndrome in the 21st Century

Not a Mistake: A Gifts 2 Essay

Story as it appears in the book "Gifts 2: People With Down Syndrome Enrich the World."

Not a Mistake

By Ellen Armendariz Stumbo

I was sitting in the family room watching TV and stroking my pregnant belly when my husband, Andy, walked into the room. Ten minutes before, he had answered a knock at the door. When I looked up and saw his dumbfounded expression, I knew instinctively that something was wrong.

"Jennifer has Down syndrome," he finally said.

"What!"

"The doctor suspected Down syndrome and did some blood work. The test results came back positive."

I didn’t know what to say and I certainly didn’t know what to think. Jennifer, the newborn daughter of our dear friends, Bill and Kristin, had Down syndrome. Andy and I were also expecting a girl, and Kristin and I had dreams of our daughters growing up together and being best friends.

"But . . . are they sure?” I asked Andy. “I mean, how is this possible?" Just three weeks before, he and I had stood in the small hospital room holding that precious, beautiful baby, and gazed into her sweet face. There was plenty of joy and laughter as the brand new parents showed off their daughter. We were delighted. Our friends had a baby girl!

That scene replayed in my mind as I tried to understand this unimaginable tragedy our friends were facing. Jennifer was such a beautiful baby--was it really possible that she had Down syndrome?Wouldn’t such a baby be . . . well, not beautiful?

The diagnosis had to be a mistake, it just had to be a mistake. Why was this happening to our friends, and how would they ever survive? Were they devastated? Were they scared? Were they embarrassed to tell people? Would they still show off their daughter, take her out in public? How would other people look at them and their baby?

In my helplessness, I reminded myself that there were no better parents for a child with Down syndrome than Bill and Kristin. Both of them were full of love and acceptance. I was also comforted by the fact that they had friends who would walk this road with them, two close friends who also had a daughter with Down syndrome. But there was one question that I could not get out of my head: What if my baby girl was born with Down syndrome? Oh my God, I could never have a child with Down syndrome, please let my child be healthy.

The next time I saw Kristin, I felt uncomfortable. I didn’t know how to act around her. I asked how Jennifer was doing and what life was like with a brand new baby, and I told her how excited I was to have our baby girl born in a few months. I was not going to bring up Down syndrome. I am ashamed to say that I never once asked about my friend’s feelings. Andy, on the other hand, had multiple conversations with Bill. Bill shared that one of the most frustrating things for him was when people would say, “I’m sorry.” Bill and Kristin weren’t sorry and didn’t want others to feel sorry for them. When Andy told me this, I realized that I did feel sorry for them, and that my attitude needed to change. Jennifer would still be our daughter’s best friend, Down syndrome or not.

Our daughter Ellie was born in August, just three months after Jennifer. Often Ellie and Jennifer reached milestones like rolling, sitting, and crawling around the same time. My daughter was four months when she rolled over and Jennifer was seven months, the time when most “typical” children are sitting on their own. It never occurred to me that seeing this contrast might have been hard for Kristin. How consumed I was with my perfect baby and my perfect life!

When Jennifer was fifteen months old, Kristin took a part-time job and needed to find someone to take care of her daughter. I happily volunteered to have Jennifer come to our house. I was so excited, knowing it would be good for Ellie to have a playmate. Little did I know that Jennifer was coming to our house because I needed her.

Over the following months, Kristin and I became closer friends and she started sharing more of her thoughts and feelings about having a daughter with Down syndrome. I became better able to see things through her eyes and join in the celebration as her daughter reached milestones. We cheered when Jennifer was standing on her own, whooped when she was able to sign, and bragged about the simple words she was able to say. Most importantly, I got to see how beautiful life can be with a child who has an extra chromosome. Jennifer had Down syndrome, sure, but the diagnosis was such a small part of who she was. Jennifer was perfect, exactly how she was intended to be. And in only a few short months, I fell in love with her. That year, in our Christmas letter I wrote, “I love that little girl almost as much as if she was mine.” And I meant every word.

Shortly after the holidays, we decided to try for another baby. It did not take very long for me to get pregnant again, but for some reason it seemed to be a complicated pregnancy. During an ultrasound exam at nineteen weeks, I felt the need to ask if our baby’s heart was okay. The technician didn’t say much, other than confirming that four chambers were visible. A few minutes later, back in the examination room, my midwife said that they had found some fluid around the heart, and I needed to have a level II ultrasound. I walked out of the clinic crying that day. I felt utterly helpless as I shared the news with Andy over the phone. The next day we had to fly to Florida for a conference, and the ultrasound would have to wait a week. A week seemed like an eternity.

Our first night in Florida I woke up in the middle of the night with an unexplained and overwhelming sense that our baby was going to have Down syndrome. With a heavy heart I prayed, Not Down syndrome, Lord please! It’s okay for our friends but not for us. I locked myself in the bathroom and let the tears come. I was not like Bill and Kristin; I could never have a child with a disability. The delays, the therapies, and other people’s perceptions were too much for me to handle.

The next morning I was still very upset. “What if our baby has Down’s?” I asked Andy.

“Why do you ask that?” he replied, confused.

“I . . .” My voice broke as I struggled with my emotions. “I had a dream about it,” I finally said, as tears streamed down my face.

Andy was thoughtful for a while, then he reached out and held my hand, “If it comes to be, then we will walk down that road, and you and I know that we will not walk it alone.”

I fell into his arms and cried. He was right. Bill, Kristin, and Jennifer would walk with us every step of the way.

When we went to have the level II ultrasound, we were overjoyed to hear that the fluid around the baby’s heart was gone. The doctor said not to worry about anything, our baby girl was perfectly healthy and an amniocentesis would not be necessary. We felt relieved to know that everything was okay.

But then, two weeks later, we went to my regular prenatal checkup. “How are you guys feeling about the level II ultrasound?” my midwife asked.

“We feel great,” I responded.

She looked confused. “Didn’t they tell you?”

“All they told us is that the fluid around the heart is gone,” Andy replied.

The midwife paused, took a deep breath, and looked from Andy to me. The concern in her face threw me into panic. I feared she’d say those words that had only been spoken in the sharing of my dream. It was only a dream. It had to be only a dream.

“Your baby might have Down syndrome,” she finally said.

My heart sank. I swallowed hard and looked at Andy. It struck me that despite this news, his eyes were peaceful. The only thing I knew for sure was that this was our baby girl and we would love her, even if she had an extra chromosome. All I could muster in reply to the midwife was, “It will be okay if she does.”

As Andy and I drove home, we decided that since there was only a possibility of Down syndrome and not a definite diagnosis, we wouldn’t share this information with anyone except two people: Bill and Kristin. When we did, they helped us process our feelings and assured us that they would journey alongside us. Our close friends were becoming our family.

Nichole was born on October 2, 2007, after a smooth and quick labor and delivery. And yes, Nichole was born with Down syndrome. As soon as she was placed on my tummy, I thought she looks like Jennifer. Several nurses told us how lucky our daughter was, for they had never seen such love and acceptance from parents who had a baby diagnosed with Down syndrome. I had fooled them all. They didn’t know that when I looked at Nichole’s face, all I saw was Down syndrome. I couldn’t see my baby.

Back at home with Nichole, I was a depressed mess. My life had been destroyed and the shattered pieces lay scattered around me. My vision blurred from the constant tears; I couldn’t even begin to put together a façade. I was in a deep and ugly hole, feeling as if warmth and light had vanished forever, and leaving me to slowly die inside. I prayed and I prayed that I would wake up from the nightmare to find out that I had a “normal” baby girl.

Exactly a week after Nichole was born, her doctor called to confirm her diagnosis: Trisomy 21. I called Andy and he came home from work early. We sat in the living room and I cried while we held each other. I thought I was ready to love a child with Down syndrome; I thought I would be able to handle it. Why was this happening to us? It had to be a mistake, it just had to be a mistake!

The doorbell rang. Andy opened the door wide and a beautiful and spunky little girl walked in, wearing one of her huge smiles. She waved both arms at us and said, “Hi!” It was Jennifer, and despite my great sadness, she had just made me smile.

Our friends stayed to visit for the evening. I couldn’t take my eyes off Jennifer that night. I couldn’t help but imagine our new life with a child with Down syndrome. And what I imagined was beautiful! I saw love, joy, and peace bundled in a baby. I saw great celebration of even the smallest of accomplishments. I imagined Nichole as a little girl running to me, offering a hug and a kiss, playing with her sister, and bringing laughter into our family. And that was only the beginning. My heart was pounding hard, fully engaged and overflowing with joyful dreams for the future. I was ready to embark on this new adventure.

By the end of the evening, I knew I could be done with my tears of sadness. As I looked into Jennifer’s eyes, I knew beyond any doubt that everything would be okay. That life with Nichole would be surprisingly rich in all aspects. That I had so much to look forward to.

Today, nineteen months later, I am even more convinced that Nichole is absolutely perfect. I would not have her any other way. Because of her, I have basked in love, joy, kindness, gentleness, peace, and goodness. Nothing about my daughter is a mistake. God does not make mistakes.

Diagnosis: Down syndrome

First Posted on October 15, 2007

Almost 2 weeks after our youngest daugter was born and was diagnosed with Trisomy 21 (Down syndrome)

Last May, when I was 19 weeks pregnant, I had a 4D ultrasound; the kind of ultrasound where you can actually “see” your baby. It was very fun and moving to see Nichole.

As I was looking at her, I felt like I needed to ask if her heart was okay. Some of our friends have been through a tough journey as their baby girl has had many heart problems and surgeries. I was not concerned about the same thing for Nichole, but somehow I felt like I needed to ask.

The technician didn't say much, except that there were four chambers visible in Nichole's heart, and that was good. A few minutes later, my midwife said that they had found some fluid around Nichole's heart, and I needed to have a level 2 ultrasound.

I vividly remember walking outside the clinic and crying, I called Andy and my parents, Andy called his parents, and many people started to pray, some people that we don't even know. The next day we were flying to Florida for the Alliance General Council and the ultrasound would have to wait one more week.
That first night in Florida I woke up in the middle of the night. I can't remember if I had a dream, but I do remember having an overwhelming sense that Nichole was going to have Down syndrome. My heart felt heavy and I remember thinking, “Not Down syndrome Lord, it is okay for our friends, but not for us.” Some of our closest friends have a two year old with Down syndrome, and I love Jennifer almost like a daughter. I got to watch her last year while her mommy worked part time at church, and I have never seen her as a child with a disability.

However, it was quite different as I thought of my daughter having Down syndrome.

The next day I asked Andy, “What if she has Downs?” and he said, “Then we will walk down that road, and we will not walk it alone.”
At Council, we prayed for healing for Nichole's little heart and the fluid to be gone. I really believed that God was going to heal her heart, and as we prayed, God very tenderly reminded me that He does not make mistakes, and I felt His peace in my heart.
The last day at council, the Alliance Missionaries had a parade, the new workers were introduced, and the ones that were retiring were recognized. We were very moved and emotional. I felt like we were being called to go into missions, and specifically, to go to the places where we would find the “unlovable ones,” those that by our world's standard are less, and have little to give. So we came home ready to start the process of pursuing missions, and asking God for confirmation.
When we went to have the level 2 ultrasound, Nichole's heart fluid was gone. Praise the Lord! We felt in our hearts that everything was okay. The doctor said not to worry, our baby girl was perfectly healthy. I walked away happy, and even then I asked Andy as we left the ultrasound room, “So does that mean she really does not have Downs?”

Up until this point, no doctor had even said the words Down syndrome to us.
Two weeks after that we went to my regular checkup. My midwife came in and asked Andy and I how we were feeling about the ultrasound.

“Great!” we said.

“Didn't they tell you?” she asked.

“Tell us what? The fluid is gone.” Her face changed, and for the first time we heard someone say, “your baby might have Down syndrome.” And as I sat there God whispered those words to me again, “I don't make mistakes.”

“And it will be okay if she does,” we said.
A few weeks later I spent some time in prayer and journaling. I was thinking about the unlovables, “Lord, is that really where you want to take us?” In my journal on June 3rd I wrote:
“It seems to be a time of questioning.....questioning the purpose of these seemingly “complications” during my pregnancy with Nichole. Questioning God's plan and direction for our family. I am wondering if God is asking me, “Do you trust me?” and my first response is, “Of course I trust you Lord.” Maybe He smiles and says, “I will teach you how to trust me.” I know it is not easy to trust God, at least not with.....the trust that requires giving ourselves, yes, our lives, our possessions, our children, our spouse! “Do you trust me” He asks, “Oh Lord I do, but honestly I am so scared, and the truth is, I want to have a perfect life. But more than that, I want to do what you want me to do, and it starts by trusting you, because you are good, and you love me, and true happiness and fulfillment in life come from you alone.”
On October 2nd Nichole was born. Two weeks early, I can't complain! The labor and delivery went almost as smooth and quickly as possible. And yes, Nichole was born with Down syndrome. Jeremiah 29:11 says, “For I know the plans I have for you declares the Lord.”
All along we were thinking missions, and God had little Nichole in mind. “Will you go to those that the world sees as less? the “unlovable” ones? Will you love them?” “Yes Lord,” I said. “Do you trust me,” He asked, “Oh Lord I do, but honestly I am so scared.”
My “life verse” has always been Psalm 139. I prayed it many times while I was pregnant with Nichole. Today there is even more meaning to these verses than ever before.

For you created my inmost being;
you knit me together in my mother's womb.
I praise you
because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me were written in your book
before one of them came to be.
How wonderful are your thoughts for me Oh Lord
How vast is the sum of them.
Were I to count them
They would outnumber the grains of the sand.

It has been an emotional journey. I have cried more tears than ever before and prayed for this all to be a mistake. It is not a mistake, this is the exact place and the exact road that God has chosen for us.

But we know God is good, and our family and friends have poured out their love on us. We have already experienced God's love and blessings in a way that maybe few people get to.

Complete trust, that is all we need, unconditional love, that is what we will learn to give. God knew that we needed Nichole, and like Andy said, maybe she needed us too. She is precious in God's eyes and He has entrusted us to take care of her. As we walk this path, we know that there will be hard times but that He will share his joy with us through Nichole.

"Do you trust me" He asks

Oh Lord I do trust you...but I am so scared.