How I Shared My Child's Down Syndrome Diagnosis and Found My Village
After a mom learns her newborn daughter has Down syndrome, she shares the news with friends and family and discovers a supportive and inspiring village ready to follow along on their family's journey into the world of special needs.
On June 24, 2010, I became the mom to a child with special needs. With no pre-existing conditions and no family history, my daughter Molly was diagnosed with Down syndrome. Shocked would be an understatement. We were confused, devastated and scared. According to the National Down Syndrome Society, one in every 691 babies in the United States is born with Down syndrome. My Molly was the "one."
It was the day after Molly was born when a doctor walked into my hospital room to tell us that she had 'warning signs' of Down syndrome and she'd need to undergo further testing. There's nothing to prepare you for when a doctor says your child may never walk, talk, or feed herself.
After weeks of tests and unknowns, my husband and I had only told a few family members about our situation. I felt as though I'd failed our daughter. I was worried for her future and our family's future. I hadn't even thought about how to share our news with others.
It took some time, but I eventually decided we could continue being upset over Molly's diagnosis or we could celebrate her differences. Emotionally, I knew I could not share Molly's story over and over to friends and family and I didn't want them to feel the need to respond immediately.
So, we shared the news as a birth announcement postcard—telling friends and family that Molly was blessed with an extra chromosome, yet we wanted no special treatment and we didn't want anyone to feel sorry for our family.
In our announcement, we wrote:
"We want everyone to see her as we do—a beautiful and happy little girl. We also want everyone to treat her like any other baby.
This is not a sad moment. We understand that sorrow may be a natural first reaction that people have, but please understand that we are not sorry.
Molly is a very healthy baby who sleeps, eats, cries, and dirties diapers just like every other baby— she's just got an extra chromosome."
A few days after we mailed our birth announcements, I shared the news on my personal Facebook page and social media channels where I encouraged friends to share their personal connections with Down syndrome. I was honest in admitting that I was still learning about Molly's diagnosis, yet I didn't want anyone to feel uncomfortable in asking us questions.
In turn, it began a great conversation of hope and inspiring stories from others. I had lifelong friends sharing their connections with Down syndrome and others reaching out with heartfelt questions and concerns. And most importantly, many wanted to know when they could meet Molly.
It was that support that strengthened our belief in celebrating Down syndrome and recognizing it daily, but also not allowing it to take over our lives too. With friends and family along with us on our new path, we had a wealth of supporters ready to cheer Molly along and encourage us as a family. With weekly appointments, her occupational and physical therapists served as fantastic cheerleaders, making sure there was nothing but love surrounding Molly.
I'll never forget the day I picked up our older daughter, Maggie, from preschool. Her teacher asked if we planned to enroll Molly at their school in a few years. I had never even considered it. Yet, the teachers and staff practically begged us to let her spend a few days a week with them at school. It was because of their encouragement that we enrolled Molly in class a few years later. And she thrived in the new environment. Sure, it showed us her learning delays, but it also reminded us that she needed to be included in those situations.
Over the years, the positives have continued to outweigh the negatives and I've continued sharing Molly's successes and hard times to include friends and family on our journey. As parents, we need their support, as does Molly, but we also wanted others to continue seeing Molly as a typical kid that just happens to have a few more challenges than others.
Today at eight-years-old, our Molly is thriving in a public school setting, and yes, she's in a special education class but she's treated just like a typical child. She loves bowling, drawing, and playing soccer. Nothing holds her back and she knows no strangers. She's making great strides each day with her reading comprehension and speech.
What started as fear has turned into great joys as we continue our journey with Down syndrome. Molly continues to grow and achieve things that we never thought possible.
And while this was not the path we saw for our family, Molly's Down syndrome diagnosis has provided our family with a new outlook on others with disabilities and has made me a more compassionate, patient parent.
The world of special needs may be scary at times, but for my family, the joys certainly outweigh the bad and I'm thankful for our 'village' of supporters that are along on this journey with us.