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.

Having a Child with Down Syndrome

Click here to read this article I wrote for everydayhealth.com

If you could take Down syndrome away from your child...

I was recently talking with a friend who will be welcoming a baby boy with Down syndrome to their family. She asked great questions.
After our conversation, I realized that a lot of my answers really come from my experience, my perceptions, and the way I do life. As I seek to share accurate information, I asked this question in the forums I participate in. After all, it would be wrong of me to imply I represent ALl parents of children with Down syndrome
What is beautiful is that we all come from different walks of life, have different experiences, different religions, different families. What bring us together is that we ALL LOVE someone who has Down syndrome. And we love them with every ounce in our bodies.

The question I asked?

If there was a way to take away the extra chromosome away from your child and make them "typical" would you do it?

And why?

My answer is no, I would not, because not only would it not be Nichole anymore, but I would go back to being my old self, the person I was before Nichole. A person that knew little about love, joy, kindness, gentleness. A person too caught up in myself.
But most importantly, because I do believe that Nichole is perfect, absolutely perfect. Nothing about her needs fixing. She is exactly how God intended her to be, and He does not make mistakes.


My friend Leah said: "It totally depends upon my day. While DS isn't who Angela is, Angela wouldn't be who she is without that extra chromosome. (does that make sense?)

There are definitely days that I wish things were different, but those ALWAYS have to do with Angela's behavior. (and Angela's behavior is SO NOT typical of children who have DS. But then again, she wouldn't be Angela if she followed the books. Angela would break every stereotype you've ever heard about people with DS.

I can't imagine Angela without DS. There are days, like yesterday when I had to pick her up from school, when I saw the other 6th grade girls chatting in the halls and wished Angela could have that. Then I turned the corner, and there she was with a different group of girls, laughing, chatting and carrying on. My girl, who who sometimes has such a difficult time in life, finding her way just like all the other girls.

So yeah, there are days I'd like to take it away, but I'd change my mind and want it back!"

My friend Courtney said, "Lucy was diagnosed after birth, so we had already met her and started to get to know her before we found out. I mourned the loss of my expectations, but I never wanted to change Lucy. There are times when I curse that extra chromosome, but I would never wish her different. It would change who she is, and I couldn't tolerate that.

I have also said, however, that if God came to me before she was born and said, "Hey, I am thinking about giving you a baby with Ds. Are you ok with that?", I don't know what I'd say. (And please don't confuse that with terminating if we had found out about Lucy's Ds before birth....because that would never have been a thought to occur to us). What I mean is, if I had been given a choice prior to knowing her, I don't know how I would have responded. Maybe I would have surprised myself and accepted this challenging blessing. Or, maybe, the person I was at that time would have shrunk from a seemingly insurmountable task.

I think about these questions often...though less than I used to...and what I have come to realize is that I am so lucky. I have an amazing little girl. She's smart, funny, loving, happy, and driven. She is so easy to be around. She brightens up a room. She has an extra chromosome. She gives the best hugs and kisses. She loves her baby brother. She points to every thing and says "that", trying to satisfy her endless curiosity. She will celebrate her one year anniversary from heart surgery this week. She loves to sing songs and she's starting to learn to dance. She is a very typical toddler, especially in attitude. She's my daughter, and she's so perfectly imperfect it makes my heart smile."

"No way! Not on your life mister!
Teddy having Down syndrome opened my eyes to what's important in life and he has definitely made me a better person. And he's the most perfect little thing I've ever seen."

"Nope, wouldn't change a single thing about Brookster. She has been the best teacher I've ever had "

"Nope, I would not take away the DS BUT... if I could take away the Autism I'd do it in a HEARTBEAT!!!!! "

"My vote is no. If I could help him with his moods and behavior but I wouldn't ever want to change his personality or his outlook on this world which is so much purer than any of us can imagine."

"I would. I don't think DS causes Anna's wonderful personality but I do think it presents a lot of challenges which I prefer she did not have. I worry a lot about the increased risk of leukemia and early Alzheimers and I also worry about the lack of employment opportunities when she is an adult, the prejudice of society, and what her life will be like when DH and I are no longer around . Just as I wish my son did not have ADHD and those special challenges I wish that Anna could have a little less challenge in her life."

My friend Angie said, "No, I wouldn't want to take it away! But I always wonder if SHE'D want it taken away or not. Time will tell that I guess. But for me, never."

"Nope, nada, nyet and no can do. Murphy has taught me so much and has made me more shall I say accepting and encouraging of diversity. She is also teaching me patience, unconditional love and has really made me play devil's advocate...A LOT. I love all my girls with all my heart, but, Murph is just the most lovable snuggable buggums. Her expressions are hysterical....and she gives the best sugar love kisses. I absolutely can not see her any differently than she is. About her future.... I'm not one to go borrow trouble, I will cross those bridge when I come to them. I live in the moment with Murph, not tomorrow, not next week or next year or 10 years from now. Who knows what difficulties will happen with any of our children typical or otherwise."

"In my humanness I would change it. I also know you can't go against God and I believe He has created Justin and I know for a total fact that I am a better person because of Justin. And I do love the way he looks and his face when he smiles--that is the highlight of my day. When he asleep at night, I can't wait to see him again. I could go on and on about his beautiful eyes but I know you all understand!

But like I said I would take it away if I could. The health stuff is big to me. While he appears very healthy, I don't think DS truly is. Though I don't like to think on it, the extra chromosome is constantly doing stuff in their bodies besides the personality stuff. My little guy is developing slower and his body is aging faster. This stuff tears me up and plays havoc with my budget as I try to feed him the best food and give him the best supplements to counteract that chromosome. And it also tears me up that I can't afford what I would like for him.

Life is so full of challenges. I would love to take some of those away from him. Its hard to think he will always have to relay on others but in God's plan maybe that is not such a bad thing. And truly whatever happens with the health stuff, I do have a peace it will all be alright in the end.

Its a hard question because really none of us have the choice and we all do love our children so much!"

"For Katie's sake: yes, in a heartbeat.

For my sake: no...I have grown and changed so much and I am profoundly grateful for the journey. Plus, I just plain old like her the way she is! "

"Change her? No way.

Help her? That's a question my dh and I have talked about. I think there are a wide range of "treatments" coming forward that we all will have to think about and decided if risks outweigh rewards. Yes, I think we will help her be the best she can be, and as healthy as she can be.

I've heard too many adults with Down syndrome say some version of the words "I have the best life ever" to think that a total change in essence is a good idea. The rest of us need to get more of what they have, IMO. And if I could get it, I would."

"YES! I come from a place where I am watching her deal with tremendous pain on a daily basis. DS has caused her to have a higher risk of having this pain. I want to see her better whatever it takes. So yes, I would get rid of it to hopefully rid her of the health problems she is currently experiencing. I would get rid of it for the health problems she COULD experience in the future. I see Avery the way I want others to see her...she HAS DS she IS NOT DS. So yes, I would take it away in a second. DS is NOT who she is, it is what she has. I think she would be amazing with or without it!"

"Yes...I would. I have watched Zack is so much pain over the past year and a half with colon issues...2 colon surgeries at 7 weeks old and one open heart. Then in the past year and a half...seven times under for colon surgeries, 4 of them long surgeries. I would give anything for him to not have to deal with this.

I read somewhere that a parent who watches their child fall asleep in their arms with anesthesia ages significantly more quickly...my poor DH"

"Well, I see an amazing kind of joy and wonder that Aleena has brought to our family and extended family. I've seen her inspire a kind of love from family members in a way that none of the other grandchildren/nieces/nephews seem to do. I've heard my mom tell a stranger that Aleena is the best thing that has ever happened to us. There is something so different and amazing about Aleena. So, I'd have to say no. However, if I could, I would snap my fingers to make communication skills easier for her."

"Nope..I just cannot imagine Kennedy any other way!"

My friend Shelley said, "Well, my obvious answer is no because if my boys had been born with the one less chromosome, they wouldn't be mine right now!
But, if I had the opportunity now to change that, I wouldn't even have to think about it.....the answer would be no. I don't believe that God makes mistakes. I know that my boys have a lot to offer the world and that their lives will impact more people than I can ever imagine. There are so many things about them that I love, and I have no idea what parts of that are because of the extra chromosome. So, no way would I change a thing. There are days that I really wish I could see the world through their eyes....the inexplicable joy they find in the smallest of things.....they remind me every day to slow down and appreciate the little things in life. They add so much to my life and I wouldn't change it if I could."

"For me this is an easy one! I would not take away Erin's extra 21st anymore than I would take away any other genetic trait that she has, as that is a piece of her that God created. I trust He knows what He is doing . I would also not wish for my other kids to have T21 because that is not what God intended for them. I want what God wants. Over the past 22 months, my hubby and I have felt incredibly blessed to have our little Erin, as we believe she is a gift not only for us but for the world. Yes, our kids are hidden treasures! We sure have grown to love that little something extra!"

"My husband and I have had the conversation many times, I would not change it, it is Noah, there can never be a separation. It makes him who he is. I know without a shadow of a doubt, that this is God's plan for Noah. I understand Kayla's point, we all have concerns of leaving them here to live in this world without us. Maybe I would just change the rest of the world, instead. "

"I would never want to change Nick's diagnosis...maybe the medical conditions, but not the extra chromosome.
What I wish WOULD change is the way the world views him. I pray about that too, that God would one day soon open the eyes of everyone to see that the extra chromosome is a gift and a blessing and not a mistake.
I think all of us would agree here that they become our teachers, not the other way around."

"No, I wouldn't want Jack to change; he's perfect and has touched many lives and has certainly changed me; made all of us better people without a doubt. But would it make his life better/easier without that "something extra" that I love? Is it selfish of me to want to keep him the way I love him?

I'm very thankful this isn't a decision I get to make! Very interesting question but I'm afraid I don't have a firm answer."

My friend RK said, "Since I don't know what other challenges Braska would face if she were a "typical" kid, I can't really be sure she'd be better off at all. So I agree that I'm glad I don't have this decision to make...but if I was going to have that choice today, I wouldn't change her. How do I know what parts of her crazy sweet personality, constant smile, and easy going nature are connected to that extra chromosome? I have to trust that she's exactly as she's meant to be, which I do believe, so I wouldn't take it away."

My friend Qadoshyah said, "I would answer no as well. My family has never talked about it, probably because we've never thought of it. He would not be the same person if he didn't have the extra chromosome. He brings us all so much joy and we all could learn so much from him. The only thing I wish could be changed are some of the things he struggles with - mainly his speech delay. I can't wait until the day he can clearly say as many words as he wants! He has a few words he says and he communicates with us well most of the time.

After all, God is the one who created my brother with the extra chromosome."

"My husband and I have talked about this too. I would not change Kasen if I were given the opportunity. I do sometimes wonder what he would look like, etc. without the typical Ds characteristics, but that is just out of curiosity, not out of a desire to change him."

"I do want life to be wonderful for Kasen, as I do for all my children. But I feel God does not make mistakes and Kasen is perfect who he is. I also feel that Kasen will have a wonderful, full, happy and fulfilling life. I always say that I think he will be my happiest, most well adjusted child. Our kids are blessed with not facing the same issues our typical kids do, such as drugs, alcohol and premarital sex. Not that this can't happen to our children, it just doesn't seem to be something they struggle with. With my eldest 2 now "dating", I am glad my son may wait a bit longer in this area of his life. Just some other things to think about and be grateful for."

"I don't have a simple yes or no answer.

Partly yes, partly no. But mostly, my answer would have to be yes.

I would never want to change Oliver. I think he's perfect. And I couldn't imagine him without his cute little ears that are slightly bent over. Or his perfect brushfield spots. Or those adorable pudgy hands.

BUT...I would, in a heartbeat, take away all the, shall we say, unpleasant side effects. If I could take away his sensory issues. Or his speech delays. Or his need to see more specialists than a "typical" child. Or if I could take away his increased risk of leukemia...then YES. I WOULD change those things.

But to me, Down syndrome is NOT Oliver. It is a PART of Oliver. A piece of him. So taking away Down syndrome would not change HIM. I sometimes, in my mind, compare Down syndrome to....cancer, diabetes, heart disease, etc. Hardly anyone would choose to not treat those things in their child. So when I look at it like that, then my answer is YES. YES, I would take away his extra 21st chromosome if it meant I could keep my Oliver but he wouldn't have to deal with some of those things that can go along with Down syndrome."

My friend Courtney said, "No....is the short answer. However if it meant getting rid of the heart defect and lack of communication....hmmm that would be tempting!
BUT Koby is Koby Down syndrome and all and I love him more for it! So...no!"

"There was a time I thought I would take it away if I had an Easy Button. But since then I have grown and have realized AJ is perfect as is. My kids put it perfectly when they talk about AJ. Many times they have said, "What could be wrong with going through life with this much love in your heart?"

What about you? If you have a child with Down syndrome, what would you say?