World Down Syndrome Day is 3-21-21. Down syndrome (Ds), named for Dr. Langdon Down, is the diagnosis for those blessed with a triplicate of the 21st chromosome. We celebrate this amazing group of people every March 21st because God doesn’t make mistakes; the triplicate didn’t slip his attention. In fact some people with Down syndrome will tell those of us with a typical duplicate #21 that we are the ones missing something.
That missing bit of genetic material may be why the world is such a cruel and serious place. People with Ds are vanishing at an alarming rate.
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Just as life expectancy for people with Ds has expanded to 60-70 years old, babies are being terminated just because they have Ds. Iceland has virtually eliminated births of babies with Ds through abortion. Norway is close behind.
Personally, I was not expecting to have a child with Ds. I wasn’t expecting a baby at all at 42 years old. But 23 years ago, Faith burst into our family and nothing has been the same since. She survived a C-section five weeks premature, weighing just three pounds, and was born with a serious heart defect. We were quickly thrust into the medical world: Faith had closed heart surgery at four months and open heart surgery at eight months, all before hitting the ten pound mark.
When things looked up medically (our fighter would survive!), I learned about physical therapy, speech therapy, feeding therapy, occupational therapy, early intervention, and play therapy. As school age approached, I educated myself on inclusion and decided Faith should be included in a general classroom instead of being segregated in a special classroom. When no Christian schools in our area would accept Faith in kindergarten, which hurt deeply, she enrolled in the public school. What a mission she had there! She touched so many lives of students, teachers, and administrators, and continues to be somewhat of a local celebrity because of all the people she impacted. I’m proud to announce that Faith was the first student with Down syndrome to graduate with a standard diploma in our county!
All of this has been a huge trial to my faith. A lifelong Christian, I was hurt and felt God was punishing me when I thought I had been doing His will. It took some time to get over the hurt, anger, and loss of trust. When the church school our older children attended refused to admit Faith, we left after over 20 years there. But we didn’t leave our faith, and found a church preschool willing to try.
As a young woman, Faith has a boyfriend, she loves her dance classes and voice lessons and has performed in many recitals and plays. With the support of her big sister and brother-in-law, Faith got involved in our original church where she joined the praise team, altar guild, and Bible study (we ended up following her back there). The isolation of the past year has been difficult for this social young woman, but she will bounce back because she’s a fighter.
This post first appeared on Angela Muir Van Etten’s blog on March 22, 2021 at https://angelamuirvanetten.com/. Readers are encouraged to share the post, but are asked to include the website link.
14 replies on “Celebrate People Blessed With Down Syndrome”
I am shocked to learn of diminishing numbers of Downs people and agree with you about what a richer better place the world is with them in it. As the mother of an amazing daughter who had Lennox Gastaud Syndrome I can’t imagine what my life would have been like without her. She was a fighter, now we have lost her to SUDEP, there is such a hole in our lives that will never be filled. In spite of her struggle with epilepsy, she found the world a wonderful place. Would that we could all do that.
Thanks Sue. Those we have lost always hold a special place in our hearts that cannot be filled. I pray that you see “the hole” as a sacred place filled with your loving memories.
Thank you, Angela, for inviting me to be a guest blogger. Thank you also for the part you played as Faith’s educational advocate throughout her school career, your advice and guidance was invaluable!
Your guest post has touched many hearts Paulette. Thanks so much for helping people to understand Ds better. Being Faith’s advocate from 2nd grade through High School graduation was my privilege. We made a great team knowing God was at the helm.
Thank you! You both are an inspiration!
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Yay, Faith!
Paulette, your story (and Faith’s) has inspired me since the first day we became acquainted!
Thank you, Ava! You’ve been a great encourager. ❤️
God intersects our lives long before we know why. I was in Paulette’s BSF discussion group not long after Faith was born and before I was working as a disability advocate. Within a few years, we reconnected on a professional level and the rest is history.
You both are an inspiration!
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Our two “extra chromies” met as toddlers at an early intervention parent group. They hosted parent nights at the PT therapy gym of now Cleveland Clinic/Martin Health Treasure Coast Pediatric Therapy. It was in these days I started getting my feet wet in understanding the workings of collaboration as it works with in the private and public or government sector for funding for individuals with Intellectual and Development Disabilities. We attended Family Cafe via early intervention Scholarship through FDLERS. We also attended a recommended Disabilities Fair by Family Network on Disabilities hosted at Martin High School. We learned to apply for the Medicaid Waiver Waitlist. The rest is history as we both interacted with the Treasure Coast Down Syndrome Awareness Group and sharing and learning more. I became a Governor Appointed Board Member of Family Care Council Area-15 on the Treasure Coast to have further impact helping families like us on this journey to navigate the system.
Many blessings on you Melody as you not only advocate for your son, but for so many others with intellectual and developmental disabilities. May God continue to guide and give you wisdom as you serve others needing your wisdom and understanding.
Paulette, I’ve always admired your tenaciousness advocacy for Faith. Through it you forged a path which may never have been available for others like her. God bless you both.
Awesome! I remember every bit of your story, and I’m so proud to be a part of your family. Way to go, Faith! Love you! 🥰
Thanks for sharing this inspiring article. Our 16 year old grandson with Ds is a blessing to our entire family! There’s been ups and downs but we are better for it. He enjoys geography, fishing and the solar system.
As Paulette said. God doesn’t make mistakes.