Mothers Share Truths Learned Because of Down Syndrome

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!

Ellen Stumbo