More Alike Than Different

The Effect Down Syndrome has on Siblings

Amazing song by a seven year old about his sister who has Down syndrome. This little boy has been touched, and I believe he has a heart unlike any other 7 year old. Enjoy!

My Teacher of Life

The pride I felt seeing my sister graduate from college yesterday made me dream of the day my girls graduate. I pictured all my girls on that day, decked with their caps and gowns. First Ellie, gracefully receiving her diploma, a beautiful young lady with a heart full of love and compassion, ready to live out her next dream and shine her light. I saw Nina, walking, yes walking to receive her diploma, with a father and mother sitting on the stands cheering her on and proud to call her our own. I saw Nichole too, and I had to try so hard not to cry.

I don’t know what will be of Nichole’s future. She is only 2 ½ but right now we do see college in her future (there are many programs available now a days for individuals with Down syndrome) It will be a day full of celebration, of empowerment, and of great accomplishment. My friend Leah wrote of her daughter Angela on her essay in Gifts 1, “The sky is her limit.” And so it is for Nichole.

But what if Nichole is not able to go to college? What if realistically her intellectual capabilities are not found in a classroom of higher education, even in programs targeted for others with intellectual disabilities? Will we have failed? Will she have failed? Will there be less value to her life?

She will never be a doctor, a lawyer, or a scientist. She will not be the greatest athlete or performer. She will not find the cure for cancer and she will certainly not be the next president. But then I look at Nichole and I am trapped in her eyes, unable to look away, unable to question anymore. The little girl that looks back at me is not broken, and she is not less than perfect. The value of her life is not found in all the things that she will never be, but in the things that she is. And at only 2 ½ her accomplishments are those that many of us seek to someday reach.

Nichole might not be a college graduate, but she is my teacher, my teacher of life. She has taught me what celebration looks and feels like. The power of cheering for others and the freedom of dance. She has taught me that a worthy performance is not found in a basketball court or a stage, but on a living room floor stacking blocks, and in saying “crackers please.” I have seen worship to God that is so honest and seems so pleasing, that it brings me to tears. I see it as Nichole tries to sing along at church, raising her arms to the God that gave life to her, or singing along and dancing to a video while she tries to sing along, “Let everything that breaths sings praises to the Lord, praise the Lord!”

She has partnered with God to work in my selfish heart. A heart that many times is so lost in this world and forgets that the standards I live for are not the ones set by people, but those set by God. She lives them, she teaches them to me.

I have seen joy in her, and wished that I could feel what she feels. It is so pure.

I have felt peace and love through her. At times when I am down, she instinctively knows it and comes to pat my back, and then she pulls me tight into a hug and offers a smile, maybe even asks if I need some crackers or chips too.

And every day she works harder than I usually do to master and accomplish new skills.

No diploma will ever be able to credit the value of Nichole’s life or the meaning of her accomplishments. She is already ahead of me in the things that really matter in life, and therefore she is my teacher and I her student.

And someday, maybe I will get to “graduate” and she will be the one cheering for me saying, “You did it mom! You did it!” And I hope that she is as proud of me as I am proud of her now.

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.

Improving Self Feeding Skills in a Toddler With Down Syndrome

Many times children with Down syndrome have a little trouble with their fine motor skills. These fine motor skills are needed when it comes to using utensils and self feeding. It is actually pretty amazing all that is involved when it comes to self feeding once you break it out in small parts.

Nichole has pretty good fine motor skills, but still needs some help. part of the problem is that she gets easily distracted when she is eating. I would say that a good quantity of her meals usually ends up on her face, hair, and floor.

Recently I saw a blog post where a mom mentioned she would put a mirror in front of her child when the kid was eating. I wish I remembered where I saw this so I could give credit to whom credit is due.

Nichole seems to master many skills in front of mirrors. We have a large mirror in the kitchen where Nichole does most of her verbal play. She watches closely as she forms words and sounds, paying close attention to her lips and tongue. I knew right away that having a mirror in front of her could turn out to be the best thing in helping her master those skills needed in self feeding.

Our great friends from Early Intervention had the perfect mirror and they are letting us borrow it until we can get our own.

And let me just say...it works! Nichole loves seeing herself in front of a mirror, and she is so aware of every move! She also talks to herself and strikes her "poses" to see how cute she is.

Although some food is still being wiped of her face and her hair still needs washing, it is amazing how much better she has done when she eats with the mirror in front of her. She is even wiping her own face when she sees she is dirty. She did before too, but now she can see when she if she needs to do more than one swipe to clean her face.

So happy eating everyone!

World Down Syndrome Day 2010

Two and a half years ago I thought my world had shattered into pieces. As I held my baby girl all I could see was her diagnosis; Down syndrome. I did not want to have a baby with Down syndrome. I wished with everything in me that we could scratch it all and start all over again. I even wondered if God had made a mistake, because this was certainly not a part of my plan. Dreamer as I am, a child with Down syndrome did not fit in my future. Maybe if she was gone, my life would make sense again.

When Nichole was two weeks old, we thought there was a possibility of a serious liver condition that could take her life. This is it, I though, God is really going to take her because I don’t want her. Was I really that full of selfishness that it had kept me from loving my daughter?

That day I kneeled down on my living room floor. Not because I was praying, but because I was crying so hard, that I couldn’t stand. I had so many emotions inside of me; they rushed out in tears and sobs. And I did pray, raising my arms, “I choose to love her Lord. With everything that I am, with everything in me, I choose love!” And I meant every word.

That day marked the end of my self-pity.

That day marked the beginning of a life altering journey. One that we continue to travel, and one that we have embraced.

Down syndrome. Back then the words seemed so dark, so scary.

Down syndrome. The words now are full of love, unconditional love. They are wrapped in joy, peace, kindness.

The baby that I never wanted, was the baby that I always needed.

Nichole has taught me more in her lifetime that I have known in mine. Down syndrome has been a gift, a wonderful gift. She was never broken, I was. And God uses her to do His work in my life.

We have discovered shades of color that we never knew were possible. A statement that I read in Gifts and that has proven to be true as we continue to walk this road. Nichole’s life has been so rich and deep. She continues to teach me lessons that are profound in meaning. We know that the value of a life is not based on what we accomplish, but in our ability to love. All because of her.

Nichole saved the life of a once-orphan girl in Ukraine. One that is now a part of our family, and one that we call our own. Nina’s brokenness would have scared us once but now we can embrace her because of Nichole.

John 9:3 has been true in Nichole’s life as the power of God is displayed in her life.

God’s child, God’s precious child given to us.

Nichole.

She is not just the child I always needed. She is the child I always wanted, I just didn’t know it.

The Effect Down Syndrome has on Siblings

When Nichole was born and diagnosed with Down syndrome I wondered what would become of Ellie having a sister with Trisomy 21. As a matter of fact, this was one of my biggest fears. But instead of telling you about our experience of 2 years I want to share with you what a sibling has to say about this.

My friend Adrienne shared what her daughter Regan wrote so parents can see the effect that our children have on their siblings. Regan applied to a fine arts summer program and had to do an essay based on a quote from Oliver Wendell Homes...on that one moment that changed you.... here is her essay:

"When I was 14 it finally hit me. Even though I have always been around individuals with special needs, their effect on my life wasn’t apparent until that moment. That’s when everything changed. I wanted to give back to them, love them unconditionally and teach them.

What brought me to this revelation is the fact that I have a younger brother who was born with Down syndrome. Not only does he have Down syndrome but he also has Autism and a lot of vision impairments like Cataracts and Glaucoma. The day my brother was born, life changed for me. I didn’t really understand when I was five how my brother was going to make an impression on my life in so many ways, but he did. He taught me the right way to treat others both with and without special needs. Because of him, I am a better person. Russell taught me the idea of loving everyone, unconditionally.

That is how my brother has impacted my life and inspired me. I grew in such a way that my desire is to work with children with special needs. I want to be a positive impact in their lives, because I have seen over the years, they don’t always have that. To be given the opportunity to impact children and their lives would be an honor. Even if it was just one child, I’d be the happiest person in the world. I feel I have gained a lot and have so much to give because of my brother. I am Russell’s voice, and anyone else who needs one. I didn’t realize it until I got older, but I had already been doing this throughout my life. Even now, when I’m in school, I try to show my peers through my actions to treat everyone with the dignity they deserve. I’m a friend to everyone who needs one. Russell doesn’t speak and barely communicates, and lives with so many hurdles, yet he taught me all I need to know about treating others and being happy. I would feel like I let him down if I didn’t teach others the same things he taught me, because I have the resources he doesn’t on his own.

Having Russell in my life has helped me to be the best person I can be. His infectious giggle reminds me of how his birth changed the direction my life was headed in. Without him, teaching might not have been in my future. Without my brother being a part of my family I wouldn’t have had the opportunities to advocate for others. Russell is my daily inspiration to continue to be that person who helps others. I will try my hardest every day and will keep trying until I die to make Russell proud by the lessons and ideas he has taught me through the years. “Thank you Russell for coming into my life and changing my life forever.”

Words are powerful. Words hurt.

Retard. Retarded. These are the words that have caused much controversy over the last weeks. The buzz started with Rahm, Palin, and Rush. Some have said we have pushed the limit in what is “politically correct.” But is it? Is it wrong or offensive to use the r-word? Is really a damaging word?

I want to tell you about our family, and I will share with you some personal and raw parts of our journey. I hope after you read this, that you will understand the power of words, and that some words, even when not intended to be harmful, can slowly destroy.

When my daughter Nichole was born, her diagnosis of Down syndrome hung over me like a heavy, wet, blanket. I clung to me. It robbed me from any feelings of love and I wondered if there was a way out. My motherly instinct was nowhere to be found. I went through the motions of holding and nursing (pumping actually) because I had to, not because I wanted to. I cried. I cried several times a day. There was fear in the unknown; there were questions about the future, about our family and my oldest daughter.

Down syndrome. I knew many things about Down syndrome, and I knew of one word that would be used to describe my daughter. It was the R-word. Retarded.

I knew that someday, someone at her school might say to her, “Hey you retard!” With many laughs to follow such a comment. Or we might hear someone explaining her behaviors to another by saying, “She is retarded.”

There was something I knew about the word retard or retarded. It is a word used to describe something or someone that is stupid, ridiculous, or inadequate. It is a word used to make fun of others, to point out their flaws, or to put them down. It is a word used to destroy, to tear down. Was this really a word that would describe my daughter?

Thankfully, it did not take long for me to discover that my daughter was not what the word retarded means. My daughter was and is beautiful. She is not stupid, she is not ridiculous, and she is not inadequate. She has taught me more in her lifetime, than I had learned in mine. She has been the greatest teacher I have had. She has inspired me more than anyone else I know. She has changed my life, the lives of our family, and of those that have gotten to know her.

My daughter has the ability to touch hearts and change lives. A quality that cannot be said of all people. She has shown me more love, joy, kindness, gentleness than I had ever known before. Indeed, her life has great meaning, great value, and she has so much more to offer.

And yet, the word “retard” continues to hang over us. Why? Because it is a word that continues to be used in a derogatory way. It hurts. It hurts our family. We fight this word, every day, every single day. We fight this word because everywhere we go, her characteristic features of Down syndrome set her apart. The stereotype that the word “retard” has perpetuated is engrained in our society, and so we fight, because she is so much more. She is full of potential, love, and joy.

There are obvious ways in which the r-word is offensive. But when it damages us the most is when it is said in ignorance. The facebook status or the teasing of a friend. It is not meant to be offensive, it is not meant to hurt. But even if it is not said with ill intent, it does. It hurts, it destroys.

My daughter is not stupid, ridiculous or inadequate. A word that has been used to mock people with intellectual disabilities makes other like my daughter wake up and face a world that has deemed her unworthy and incapable. Incapable because of a word. A word that is not who she is. She is capable, she has gifts, she has talents.

So next time you hear the R-word, next time if you think you might be about to say the R-word. Please stop and think. Think about my daughter, think about others that like her stand strong against the tide of the word that has labeled them in such a negative way, yet they have so much potential. As her family we stand with her, we stand strong, we fight.

Will you stand with us?

You can take the pledge to end the r-word by clicking here. (if you do, will you leave me a comment and tell me you made the pledge?)

I wrote this post a year ago when we were getting the MR waiver for Nichole, thankfully, it has been changed and is now called the ID waiver. Click here to read it.