Mothering a child with Down syndrome has taken me on the most beautifully winding road.
October is Down Syndrome Awareness Month, and I want you to know my daughter Eliza is a gift. For all her needs, for all her milestones that look different than my other children, she radiates a magical kind of light that shines into my heart’s darkest and deepest crevices.
Eliza illuminates my cheap expectations of motherhood and replaces them with something grander, something much more valuable.
Eliza is Eliza, and that is enough.
Down syndrome isn’t a disease or an illness — it’s the presence of an extra 21st chromosome. About one in every 800 babies born in the U.S. has Down syndrome, and around 400,000 people have Down syndrome.
My daughter is worthy of knowing the love of a mother who will cry for her, who will fight for her. I’ve kept her warm on my chest in sterile hospital rooms and mixed her special formula in crowded waiting rooms. I’ve stayed up late researching specialists and risen before sunrise for physical therapy.
She’s worth every “yes” and every “no.” She’s an explosion of expectations undone, threads of joy and grief unraveled. She’s shown me a strength I never knew, and she’s exposed my weaknesses, too.
It’s human nature to default to equating different with bad, especially when we’re scared.
Fear creeps in and we don’t know what to do, so we shrink back. We begin to see children as commodities to fill a need in us, instead of viewing motherhood as a commitment of filling a need for them, a continual pouring out and filling up not from what they can give us, but from something greater that comes with the honor and privilege of having them in our nest.
A recent CBS News piece about Down syndrome highlighted the fear that is entangled in the unknown, or perhaps better put — what we think we know: “Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.”
Life is better with Eliza.
Beauty is hidden in us all, and taking away that beauty is a great loss for humanity, one that I mourn deeply. The U.S. has an estimated Down syndrome termination rate of 67 percent, with some research and studies estimating much higher. Like any child, my daughter is worthy of a family who will spur her on to love and be loved. Whatever my husband and I have lost as her parents, we have also gained.
As mothers, we should unite in celebrating and equipping each other as we parent children who may have some differences.
In the spirit of empowerment over fear, central Iowa mom Jen Jacob founded the Down Syndrome Diagnosis Network (DSDN), a nationwide organization that equips parents and doctors with up-to-date medical information for Down syndrome, providing guidance for medical professionals on how to deliver a diagnosis. It also connects parents with pre- or post-natal diagnosis with communities of parents who have walked similar roads.
Special needs parenting is not a path I navigate alone. In DSDN “rockin’ mom” groups, women from all perspectives have connected me with amazing specialists, bridged gaps in confusing symptoms, and helped me feel like I can live a beautiful life balancing Eliza’s needs an as active mom to three other young children, too.
(And in case you were wondering, according to a medical journal study of more than 3,000 families across the U.S., 88 percent of brothers and sisters say they are, in fact, better people because of their sibling with Down syndrome.)
I’m early in my experience of parenting a child with Down syndrome. I offer my words not as an expert, but simply as a mother who has seen the beauty that comes with parenting a child who is different.
Being a mom of a child with Down syndrome doesn’t make me a superhero or a saint, it simply makes me a mother of a very, very special little girl.
Down Syndrome Facts
- Children with Down syndrome are more like other children than they are different.
- During the first few months of life, a child with Down syndrome behaves like most other infants and generally needs the same care, attention, and love.
- Language, motor, and intellectual development are generally delayed in children with Down syndrome, and though most people with Down syndrome experience some degree of cognitive delay, though there is a wide spectrum of intellectual abilities, developmental progress and behavior in children with Down syndrome.
- Research shows that the development of a child with Down syndrome is positively influenced by a caring and enriching home environment, early intervention, and improved educational efforts. In most cases, full inclusion in an educational and social community serves the needs of a child with Down syndrome in the most positive way. (From National Down Syndrome Congress)
Down Syndrome Resources
- National Down Syndrome Adoption Network
- Gigi’s Playhouse
- Down Syndrome Diagnosis Network
- National Down Syndrome Congress
*Photos by Samantha Owenson Photography.