Today is World Down Syndrome Day! March 21, because people with Down syndrome have 3 copies of the 21st chromosome. Many use this day as an opportunity to educate, or spread awareness of the different challenges that these individuals face. It is a day set apart to celebrate our kids, siblings, cousins, friends, and neighbors with Down syndrome.
Celebrate Down syndrome? Yes, I know, it might seem puzzling to say that Down syndrome is celebrated. After all, who would willingly choose to have a child with Down syndrome?
The truth is, most of us did not choose to become special needs parents. For many of us, dealing with the diagnosis was hard, we had to let go of hopes and dreams. Yet, as time goes by and we find ourselves parenting and loving our children with Down syndrome, we change. We begin to use words to describe them, like “gift,” or “blessing.”
Here at Not Alone, there are four of us writers parenting children with Down syndrome. We have different styles, we have different voices, yet our heart is the same. Today, on Down syndrome day, we want to gather our voices to share with you what we have learned from our children, and the ways in which our love has expanded.
Truths we have learned because of our children with Down syndrome
From Stephanie O. Hubach
Every human being is a unique, dynamic mixture of capacity and brokenness. We each have God-given gifts, and we each experience different degrees of difficulty in every aspect of our personhood. What we call “disability” is simply a more noticeable form of the brokenness and difficulty that is common to the human experience. Tim’s not broken and I’m not whole. Each of us is a dynamic mixture of elements of capacity and elements of brokenness in different packaging.
The image of God isn’t primarily a function of reason. When Christians talk about the sanctity of human life and the image of God, we often assume that one of the hallmarks of people being created in God’s image is our capacity to reason. But Tim has taught me that we primarily image God when we reflect His character. Whose character looks more like Jesus on a daily basis? Mine? Or the guy in my house who dances joyfully, loves deeply, prays fervently, weeps over sin, and forgives quickly?
The deepest prayer life doesn’t come from effectively articulating my needs, but from understanding who God is and trusting Him. I love to hear Tim pray. He shares what is on his heart very openly with his heavenly Father. Out loud. And he utterly trusts Him to take care of his needs. And then he lets go. It catches my attention every time.
The joy of human achievement is best understood in relative terms, not absolute terms. Tim has shown me that it doesn’t matter how your abilities or achievements compare to “the other guy”—what matters is: How are you developing the capacities that God has given to you? It doesn’t matter if you “come in first.” It matters that He is first, and that you celebrate the life that has been given to you.
From Gillian Marchenko
What I love about my two daughters with Down syndrome, and what I want others to know about them is simple: They are normal little girls, made of the stuff other little girls have, flesh, blood, love, laughter, selfishness, wonder, mischief, curiosity, impatience …
When Polly was born I ignorantly assumed she would not be a typical little girl. I made the mistake of thinking she would not be the little girl I wanted. But her presence in my life and the God-ordained appearance of her sister Evangeline through international adoption from Ukraine daily eradicates my pre-conceived notions about individuals with disabilities. Sure, my girls have special needs. But they also have what I call “special powers,” the ability to love without limits, to smile at a new day without drudgery, and to teach this Mama over and over what really matters in life.
On World Down syndrome Day, I ask you to remember that regardless of a child’s ability or disability, she is a child first, and should be empowered and celebrated all the days of her life. If forced to point out differences about my girls, well then, they have ample supply of the good parts of the human heart, gifts from God himself to reveal his glory: joy, love, kindness, courage, endurance. Pay attention to my daughters, and to what they have to offer, because these are the things that most of us find wanting in ourselves.
From Amy Julia Becker
Our oldest daughter Penny, age 7, has Down syndrome, and through the course of her life Penny has taught me two almost contradictory truths about our common humanity:
One, that basing a person’s worth upon their achievement is problematic for all of us. I threw away the baby books with developmental milestones early on in Penny’s life, and I worked hard to let go of expectations of when she should be able to do specific tasks. But then I realized that I needed to do the same for myself and everyone else. If my identity is based upon my ability, then my identity is always in question. I’m always racing to keep up and desperately hoping to be able to prove myself. Penny has shown me that our identity resides in our belovedness, in the fact that we are loved by God and one another.
Two, that once we know our identity as the beloved ones, we are free to explore our abilities without pressure to perform. Once I let go of expectations of who Penny “must” become, once I let go of the idea that I had been entitled to a certain type of child, she then surprised me by demonstrating her very own particular abilities.
Today, Penny is the beloved one, first and foremost. She also happens to love to read, dance, and take care of her little sister. She loves spelling “medium-hard” words and adding numbers together on her fingers. She loves cuddling with her mom and listening to music with her dad and playing Mary Poppins with her little brother. Penny is the beloved one who loves in return.
From Ellen Stumbo
She holds nail polish in her hands, tugs at my sleeve and asks, “Paint nails?” Her smile is like an electric shock, deep love for this little girl running through my veins. “Okay,” I say. She runs into the living room, sets a magazine on the floor, and gently places her hands on it. As I paint her fingernails she giggles, “It tick-us!” I don’t think it tickles her really, but I end up giggling along with her.
Nichole might not get to be a college graduate, but she is 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 matching words and letters, and in saying simple broken sentences, “Paint nails?” I see it as she embraces hurting people and her love brings them to tears, “She makes me feel loved like I’ve never been before,” they say. I have seen worship to God that is so honest and seems so pleasing, that it moves me. I see it as Nichole tries to sing along at church, dancing to her favorite song, “Do not be afraid, do not be discouraged, for the Lord your God will be with you, wherever you go!”
She has partnered with God to work in my selfish heart. A heart that many times is so lost in this world that it forgets that the standards I live for are not the ones set by people, but those set by God. She lives them, and she teaches them to me.
Once, I was sad my daughter had Down syndrome. Yet as we paint her fingernails Strawberry Shortcake pink, I am overwhelmed with love for this little girl, and incredibly thankful that she is mine.
Happy World Down Syndrome Day!
Latest posts by Ellen Stumbo (see all)
- My Child Is a Person, Not Just An Inspiration - October 4, 2017
- Why Women’s Conferences Need to Consider Moms of Kids With Disabilities - September 20, 2017
- Siblings: So Full of Love - August 19, 2016
Special Powers…love that!
My son has used his special powers to reset my perspective as well. Congrats to you on a wonderful article!
Reblogged this on Bummyla.
Reblogged this on downwiththat.
Just read the Mothers Share…contributions. I don’t usually make comments on sites like this, but wanted to say something about one of them. I happen to know Stephanie Hubach and her son Tim. What wonderful individuals they are. I know firsthand how true the words are that she wrote. They are both significant contributors to the lives of all who know them–at home, at school, in their neighborhood, and at their church where I first met them ten years ago.
This is an amazing site!!! I am a mother of 3 downs babies, and I would not have it any other way. I have 2 girls and 1 boy. I have so many words to describe my life with my kids. Crazy, beautiful, spastic, loving, joyful amazing, sweet, precious, having patience, being courageous, strong willed, understanding, uncontrollable at times, messy, and perfect. I know God chose me to be the mother of my babies Aubriee, Ashlynn and Ashton, because he knew I would love with no bounds, and he knew I needed to learn a great deal of lessons from them. Out of everything they have taught me, the greatest lesson is to love no matter what. My family has been blessed and I could not ask for more out of life, so here’s to Down Syndrome day!!! To me I celebrate it every day, but it is nice to actually have a day for my babies so others can celebrate with me!!!
As a mother of a 22 year old with Down Syndrome and the aunt of a 24 year old with Down Syndrome I can relate in some way to each one of the parents in this article. Every parents life experience is different and will change as their children become older. The ups and downs, the fears and concerns and needs will never end. I never know what challenge awaits us around the corner or at the next mile stone. One thing I am certain of, is that without these beautiful boys in my life, I would not be who I am today. The lessons I have learned, the patience I have gained are well worth the challenges we have faced. I am honored God chose my family for these gracious blessings.
These moved me to tears. Thank you for sharing the gift of your children with us. May God be praised!
Thank you, thank you for these beautiful thoughts. My little grandson was born nine weeks ago, seven weeks premature and Down’s. We are just beginning down the path you all are already on. I am so grateful for the hope you have given me– for a happy life for this precious little one, and for the wonderful blessing he will be to all of us. Thank you for this amazing perspective.
Tears of joy from reading this much love. Thank you.
Thanks for sharing your stories! I too, have a little girl with Down Syndrome. Her name is Khyleigh Grace, she will b 6mo on Sun. I didn’t know she had Down Syndrome until the day she was born, she was also born with a really bad heart. She has been sick most of her life. She had open heart surgery on Jan 17th to repair a VSD, ASD, and ductus arteriosis. She is doing great now, other than she not gaining much weight. She is considered FTT(failure to thrive). I’m saying all of this to say, no matter what challenges this little faces in life, where its fighting for her life in the CICU, or challenges that come with having Down Syndrome, she is OUR daughter and we love her no matter what! She is the youngest of 4, and we love her just as much as the others! God has truly blessed our lives with her presence. I wouldn’t trade her for any other baby in the world!
Wow, I can’t type. This little *girl* faces…
*whether* its fighting….. Oh, and she even has her own Facebook page! :):)
I am Khyleigh Grace’s Mimi and so very proud to be hers. She is the most precious baby in all the world. She has angel eyes. They are big and beautiful. She looks at you with such compassion. We were there with Kristin and her family through all the rough times. I pray God will give Khyleigh and her family many precious moments that will far out weigh all the bad ones…He already has so far. God bless you, Kristin. You have amazed me. You have such strength. I’m a very proud mom. May God richly bless all of your lives that have these special downs children…they are truly a gift from above.
Kristin,
Thank you for sharing about your sweet girl with us. My daughter had heart issues when she was a baby, but we did not have to have surgery. I appreciate your words, “No matter what challenges this little girl faces in life, where its fighting for her life in the CICU, or challenges that come with having Down Syndrome, she is OUR daughter and we love her no matter what!” Yes indeed, there is so much love!
Hi Kristen, My son Tim was in and out of the hospital often in the first seven months of his life too. He had a severe case of AV Canal (huge holes in both chamber and also significant malformation of both valves.) He also almost died from bacterial spinal meningitis at 12 weeks….so I know how stressful it is to feel like you are walking some fine imaginary line between life and death! But it was that same line that, in many ways, bonded me to him so deeply too! After he had his surgery (and fully recovered), he really took on a whole new lease on life! It will be fun to see how your sweet Khyleigh grows as she begins to heal from such a rough first start! God bless you friend…you have a precious treasure in your arms–one who will bless your life, and many others, beyond what you can ever imagine! God bless you and your family!
Our daughter, Anna Grace, was born with a deletion in her 14th chromosome and died at birth, she was our 4th child. It breaks my heat that to few mothers want to take home their special blessings, when I wanted mine so badly. I am so thankful for you mothers that have risked it all, have gone though the valleys and the death of your dreams to keep your blessings. I am so grateful that you have answer the call to be loved divinely.
LOVED, LOVED your blog on having a child with DS!! Nothing could have prepared us for the utter joy and celebration our daughter has brought to our family, not to mention the laughter!!! We named her Joy but think we really should have named her Joy with an exclamation point. Blessings!
Debbi, I love that, Joy!
Our family was fortunate to have a brother, who has gone home to God, but who lived to be fifty five years of age. Many of the things described in your statements were things that I experienced too. He was funny, happy, but most of all loving and lovable. What a great gift God gave us. After my parents passed away, I was pleased to have shared my home with him for about ten years before he too joined them in heaven. I seldom have a conversation with my siblings and my children that something he did or said doesn’t crop up. He was I suppose my most favorite “character”, He always brings us happy thoughts and wonderful memories. Thanks for sharing your stories. I loved hearing them.
Marge, thank you for sharing your brother with us! What a beautiful testimony of the love between siblings!
I am the mother of a daughter with Down Syndrome. I didn’t have to let go of hopes and dreams because Erin is adopted. I adopted her when she was 3 years old and she is now 37. Over the years people have told me how wonderful it is that I adopted a special needs child. I always reply that I have been sooo blessed. Erin has lived independantly for about 15 years and has become so self sufficiant. Although she does so well on her own, I tell her she will always be my baby…..she is my youngest.
Thank you for sharing with us about your daughter! Helps us with younger children imagine the day when our kids are on their own, showing everyone how capable they are (although I would not mind having Nichole live with us forever).
Beautiful! Some of the best people I know have Down Syndrome. And for sure some of the best people I know are their parents. Love this.
Thank you for sharing your stories. I have a beautiful girl Katie who is now 19 and getting ready for the prom. She is the most beautiful person I have ever known inside and out. I can’t imagine our lives without her!!
I look forward to those days when Nichole is older, and I get to help her get ready for big occasions, like prom. Thank you so much for sharing!
THAT WAS BEAUTIFUL!!!!
Wonderful! I taught pre-schoolers with Down Syndrome (and other developmental disabilities) for 10 years. Later I had a residential facility (politically way of saying I shared my home which was a licensed facility) with four adult women with Down Syndrome. We had a great time living a fun-filled and rewarding life.
Marilyn, I often wonder what life will be like when Nichole is older. For now, my husband and I joke that we will beg her to live with us forever, but a similar arrangement to what you describe has been something we have tossed around. We do have challenges and many frustratuions, but overall, we cannot imagine life without our sweet rascal in our every day lives.
a question was posted on our Baby Center board about independent living, and my reply was “you’ll have to pry Gary out of my cold dead hands….he’s MINE, I’ve waited 40+ years for this little boy. Maybe someday I’ll consider letting him living in the other half of a duplex (with me in the other half of course)…maybe”. So I totally get your “begging her to live with us forever” remark!! Thank you for sharing your story. Happy 3-21 !!!!
The blog was wonderful…but may I say….I LOVED the LOVING pictures! VERY SWEET!
I myself am a big fan of the pictures too Cindi! As soon as I knew I was on to blog today (on Wold Down Syndrome Day) this is exactly what I had in mind, smiling, bright faces showing that we indeed have so much love.