Today, 3-21, is World Down Syndrome Day, and my first of many celebrating as a mama to a little one with Down syndrome.
By no means am I an expert on the extra chromosome, but I’m eager to share a bit of our story — a bit of Eliza’s story — with you.
When we learned of sweet baby with Down syndrome waiting for a family, Jonny and I both had misconceptions and myths pop into our heads. We don’t know until we know.
I am grateful for families and people who have been touched by Down syndrome that I have had the privilege of watching and learning from, which helped confirm our “yes” toward Down syndrome adoption. I have seen the joy and value of each life God has created, and most of all — I have learned that we are more alike than different.
So, here are four quick things I’ve learned about Down syndrome:
- What is it? Down syndrome occurs when a person has an extra copy of chromosome 21. This extra genetic material can cause delays in the way a child develops. Down syndrome is a lifelong condition. With care and support, children who have Down syndrome can grow up to have healthy, happy, productive lives. (Babies with Down syndrome are not only born to “old” moms — and what triggers the extra chromosome is still unknown.)
- What’s normal? Each baby, child, and adult with Down syndrome is different. We don’t define people who have Down syndrome as “one of them” or “a Down’s baby” — each person has unique qualities, strengths, and challenges. At three months, Eliza is much more like a “typical” child than a child with Down syndrome. She has strong muscle tone, rolls over, and holds her head up.She sleeps through the night and has earned the nickname of little snuggle bug due to her love of cuddles. She giggles, coos, and even belly laughs when something is really funny. My hope is not to hold unrealistic expectations over her, but at the same time, empower her. One of the most common things young adults with Down syndrome express? “Don’t limit me.”
- Will she have health issues? We are so very grateful that Eliza has not had eating or feeding issues, and her congenital heart defects look to be healing on their own. As we have done with any of our other children, we will continue to have check-ups with proper doctors, specialists, and therapists to make sure we’re doing all we can to keep her healthy and strong. While there are medical conditions associated with Down syndrome (including heart and intestinal problems, visual and hearing loss, thyroid function fluctuations, leukemia) no person will have them all. Down syndrome is very rarely a complex or severe disability. It is more commonly described by experts today as a ‘mild to moderate developmental delay‘.
- What does the future hold? People with Down syndrome have as much hope for the future as you and me. So much has changed, even in the last 10 years. In 1983, the average life expectancy of a person with Down syndrome was a mere 25-years-old. Today, it’s 60. While behavior, mental ability, and physical development varies from person to person, many people with Down syndrome grow up to hold jobs, live independently, and enjoy normal recreational activities. College, career, marriage…these are possibilities, and the more we support inclusion, the more hope becomes reality!
Community is so important in the parenting journey, and having people who “get it” is even more important when you’re parenting a child with special needs. I’m so grateful to have connected with Jen Jacobs through a mutual friend. Jen is a fellow Iowan and mama to a little one with Down syndrome, and she formed the nonprofit Down Syndrome Diagnosis Network and co-wrote The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood.
This book is written with compassion (not fear!) and clearly walks you through key points to expect as you raise a little one with Down syndrome. It includes lots of excerpts from real-life parents, and it’s easy to flip to the chapter you need. It’s clear and easy-to-read (not overly medical, which some Down syndrome books are). It uses positive language and I’m so grateful to have it in my toolbox.
What I want you to know is that Eliza is a blessing, not a burden.
She is treasured and loved and we are so grateful for the profound privilege we get in raising her. She makes the world sparkle by just being her, and the joy she has brought our family and friends is palpable. I pray I’m worthy of the calling of being her mommy. Eliza has two older brothers who love her beyond words and a daddy who would do just about anything to make her happy and make sure she knows just how loved she is.
Happy World Down Syndrome Day!
- Watch: Olivia Wilde will change the way you think about Down syndrome.
- Give: Ruby’s Rainbow (College scholarships!)