When our Samuel was ten months old, a professional acquaintance told me the story of her own scare with Down syndrome during her second pregnancy. I sat next to her at the little kindergarten-size table while our kids played at the library. Sam laid quietly on a blanket near our feet, gumming a stuffed giraffe. “We did the amnio because I just had to know. My husband and I couldn’t have handled a child with Down syndrome. Thank God the test was negative,” she told me quite matter-of-factly. I was so surprised at her remark, I didn’t know how to respond. I can’t even remember what we talked about after that, but I do remember saying goodbye about ten minutes later, scooping up my little boy, walking out to my Jeep, and crying while holding him to my chest.
This was the first negative comment anyone made in my direct presence about my son’s diagnosis. I think it hit me so hard because we were very open from the night of Sam’s birth, when we discovered his extra chromosome, that we wouldn’t change a single thing about him. He was created, from his very first moments of conception, to have an extra chromosome. To be our Samuel. To encounter another mother, a professional child educator, no less, who so clearly thought a baby with Down syndrome wasn’t worthy of life broke my heart. That was when I knew we were going to have to work hard to share with our entire sphere of influence that Down syndrome is not scary. It is not detrimental to our way of life. It is not the saddest thing that has ever happened to us. I cannot overstate the profound and positive impact Samuel’s life has had on our family.
If you question this, please go back through the last five years of this blog and see for yourself. Photos, videos, stories. They show joy and light and an incredible number of milestones reached and adventures conquered. Some people worry that having a child with Down syndrome will bring an end to their dreams and hoped-for futures. But as I write this from my porch in rural Africa, I can tell you that Sam has only brought bigger and brighter dreams for our family.
Yes, life does change when adding a child with Down syndrome. There are challenges and new ways to learn to do some things, and there are appointments for PT and speech, and IEP meetings with teams in schools. Not all days are a walk in the park. But I promise I’ve also experienced lots of challenges and appointments and rough days with my daughter who does not have Down syndrome. Far more noticeably, our life has changed in the most magical, joy-filled ways. I never before laughed as much as I do now. I never before celebrated little moments like I do now. And I never before loved as deeply as I do now.
It’s no secret that many countries around the world have been working to decrease the number of children born with Down syndrome each year. In the last few weeks, there has been news coverage on the near eradication of children being born with Down syndrome in Iceland and Australia. Many parents who have children with Down syndrome are blaming these high numbers on a lack of information following what can be a very scary prenatal diagnosis. This is exactly why I am working so hard with other parents, families, medical professionals, educators, and so many others who love someone with Down syndrome. I share our experiences here on the blog, I post on other blogs and websites, I share regularly on Facebook and Instagram, and I am a part of a book project called The Down Syndrome Diary that will be distributed to medical centers and new parents to help give encouragement and hope to families after a diagnosis.
What can you do to become more informed and help spread the word that those who have Down syndrome are worthy of life?
- Share uplifting stories of those with Down syndrome that pop up on your Twitter or Facebook feeds.
- Read books about families how have children with Down syndrome (Bloom, The Lucky Few, to get started).
- Follow Instagram feeds that share real-life journeys with Down syndrome (check out the hashtags #theluckyfew #morealikethandifferent #lifeisbetterwithyou).
- If at all possible, get to know someone with Down syndrome. Look them in the eye, shake their hand, say hello. Tell them you like their shirt or their smile or the way they do whatever it is they like to do. Make conversation or simply be in their presence. Ask their parents or siblings questions if you have them.
I know how it feels to be unsure about how to interact with those who have Down syndrome. There were times I worked with kids with Down syndrome in schools before Sam was born, and I didn’t always know what to say or how to respond. That’s okay! Simply be kind and considerate, just like you would be with anyone else you may meet.
I wish I had no reason at all to write a post such as this. That the world would see Down syndrome for the beauty it brings to all of creation, that differences are unique and to be cherished. But I do have reason to write, and if need be, I will spend the rest of my days spreading the message that my son and every other person with Down syndrome is worthy of life.