Why the story matters

As a writer and mom, I’m a big fan of stories.

Around our house, we read bedtime stories most nights — silly ones, sweet ones, ones that rhyme, some we sing aloud.

When my 4-year-old was around 3 or so, I asked him “why” he had done something that earned him a time-out. (I truly don’t remember what it was now.)

He replied precociously, “That’s just my story.”

“Your story?” I responded.

“Yep, that’s just part of my story,” he plainly explained.

I thought it was just weird toddler language at the time, but I think back on that sometimes now and realize that even kids know: the stories we tell, the stories we believe, they become who we are.

I thought of this analogy while reading the outpouring of comments and emails from my recent post, Dear mom with a prenatal Down syndrome diagnosis. It has been, by far, my most popular post to date — and one that has taught me a lot as I’ve connected with others and read their responses.

When seeing hundreds of comments and emails, tweets and Facebook replies — many from different perspectives — I had the unique opportunity to understand why people believe what they do about having a child with Down syndrome. And it is as simple as this: people believe the story they know.

For some, they have been told stories that are outdated. Others, are simply fictional. Some are based on rumors and fables. Others are as dry as reading a medical encyclopedia. Some are horror stories — full of fear and fright. Others are aloof and impersonal.

And some — often told by the greatest storyteller of all (a person who actually has Down syndrome) — are stories of wonder, beauty and joy.

The story that we tell matters. How we tell it matters. Who we tell it to matters. And none of these are small matters.

They are matters that fill hearts, grow families, build communities, bring peace, move mountains, speak truth and change the world.

Thank you for sharing your stories with me — I wish I could share them all, but here’s a handful of some of the beautiful responses to my last post:

“I wish they had told me I hit the jackpot. It’s a slightly different journey then we expected, but it’s a far more beautiful one.” — Sara

“I wish everyone could experience this journey. It’s truly a blessing! Proud Grandma.” — Debbie

“I am the mother of wonderfully funny, interesting, consternation-causing, loving, caring, twenty-four-year-old Miss Emily. I thought I was a good person before she was born. I know I am a better person since she was born. I could ask for nothing more than to belong to that secret sorority.” — Kathy

“My little boy is 5 months old and was diagnosed with Down syndrome at 10 days old. While I still have moments of sadness and anger, for the most part I am just overwhelmed with the joy he has brought to my life. His giggle is his – it’s not because of Down syndrome, it’s just because he is who he is. Getting to know him beyond the diagnosis has been one of the best things to ever happen to me. I feel so lucky to have him in my life.” — Megan

“The journey, as with any other child, is not without its challenges, but oh boy, the rewards so-o-o-o outweigh them!” — Barb

“My brother had Downs and I was so blessed to be able to care for him for many years after our parents passed. They were the best years of my entire life. I was the best me when I was with my brother. No one every loved more than Bob, and no one ever conjured up more smiles and laughter in everyone that crossed his path.” — Suzi

“I have a cousin with Down syndrome and I find myself wishing I could share his story with everyone. He is, quite frankly, awesome in every way. He is now grown, in his twenties. He works at a Dog Daycare and volunteers around the community with my mom and aunt. When I watch him navigate through life, this grown person who I always remember as the little boy from my childhood, I am so proud of him and filled with love.” — Mary

“I wish my grandmother could have read your amazing letter. She died 4 years ago this month at the age of 89. Her son, my uncle, was born with DS. He is a fabulous, funny 62 year old man these days. It was 1951 so the doctors told her to institutionalize him. She and my grandfather did no such thing. He went to school, he took swimming lessons, he read his favorite magazines (TV Guide and Sports illustrated) on car rides to my house as a child. Who would have thought he would outlive his mother and STILL be going to work and being productive today. No one in 1951, that is for sure.” — Wendy

“My beautiful daughter Jenny was born with Down syndrome almost 26 years ago (birthday June 19th). She keeps me grounded, when I may be having a bad day, all I have to do is talk with her and it makes things all better and puts a huge smile on my face. She enjoys life each and every day!” — Kathy

“I’m a 53 year old adult with Spina Bifida which can now also be diagnosed pre-natally. When I was born the doctors told my parents the following:
1) I would never walk
2) I would never be able to be in the main stream school system
3) Would never work and worst OF ALL
4) Never live on my own
I’ve achieved all that and more.
So all you parents who have a child diagnosed with a disability through pre-natal testing, give your baby a chance to prove the doctors wrong.” — Leslie

“My sister gave birth to a baby with Down syndrome 34 years ago. Doctors told her to put him away and forget about him – have another child. Fortunately, Robert’s parents said he is a gift from God and they would never ever give him away. Today, Robert is the Founder of IDEAL WAY, and an internationally acclaimed motivational speaker who has presented to over 100,000 in more than 60 cities across NA in three years. There are no words to express my special relationship with Robert. Most of my life was spent teaching Robert. I know who deserves to be on Time Magazine’s list of most influential people – Robert, my nephew and teacher.” — Addie

“I have a friend who is into his sport here in Dunedin, New Zealand and he has Downs syndrome as well and has full time work. He also drives his own car. Another thing that Hugh does is take part in The Special Olympics. As I am in the mature age range, I take part in the New Zealand Masters Games and I tell him that I call it Geriatric Olympics. He has a good old laugh when I tell him that.” — Fiona

Keep telling your story — even the smallest stories can have a big impact on someone who needs to hear it.


  1. I am just starting this beautiful journey with our second son, Jack. Your latest post was so encouraging to me. I so wish we would have had those words when we received his diagnosis at birth, twelve weeks ago. My friends that have children with Down syndrome have been one of the best gifts as I process this new path. What an amazing family and community we have been adopted into!! I began sharing our story shortly after Jack’s birth as I know God has a perfect plan for his life and want other to see how he is going to change the world!


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