How My Son With Down Syndrome Inspired Me to Create a Children's Book

Fear can keep us from embracing new situations. I found this out first hand when I learned, at birth, that our son had Down syndrome. I was filled with fear. It was fear of the unknown path we were embarking on. It was fear of the young man and adult he would one day become. It was fear of a future I did not understand and fear that was deep seeded in antiquated stereotypes.

When I turned to the internet, I found even more fear. I was afraid of all of the health conditions that could arise: the heart problems the delays, the therapies… all of it perpetrated my fears. It was then that I had to make a choice. I could live frozen by this fear and allow my life to become colorless like the misty gray fog that seemed to be embracing me, or I could change it.

 I chose to change it.

I chose to change my own perception and help any mom that would come after me and fall into the same snare of fear I had tripped into. I found that in embracing our new life and helping others, I no longer held on to fear. In the first year of my son’s life, I fought fear and I learned to reclaim my joy. By helping other moms on this path, I also found gratitude for this detour that I wouldn’t have chosen, but would now never change.

The fear is gone now and has been replaced by hope, and a genuine excitement for the future. My son has caused me to become the biggest advocate for him and all those with Down syndrome. Together we have launched a well-received website that has thousands of hits a month and received an honor from Feedspot for our efforts. We have provided gifts of welcome baskets across the nation, shared diagnosis stories from around the world on our site and we have launched a brand new children’s picture book to show the world there is nothing to fear because children with Down syndrome are beautiful souls that one should count themselves lucky to encounter.

Down syndrome is not the monster of a diagnosis I thought it was and my son is proving that to me every day. I want the world to know this so that mothers who receive a diagnosis either at birth, or prenatally, will see that fear does not win. It is my dream to put so much positive out there that fear takes a backseat and barely sneaks in as an afterthought.

Dear fear, you did not win, we are conquering you.  

When I was a child, I had a set of books that I could look at for hours. They were small picture books of children and their farm animal pets having adventures. I loved these books because I could pretend I was having the adventure, and what child doesn’t love the idea of a farm with animals? Fast forward to the present and I am now the mom of six children. I have shared these cute stories from my childhood with my children for many years. However, when I pulled them out for my youngest son, my child with Down syndrome, I began wondering if I would be able to find books of children who looked like him, doing fun things that he would like to do. I found very little and decided it was time that the world at large saw children with Down syndrome enjoying the same things that all children enjoy. The farm life is now a part of my daily living, as is Down syndrome. I hadn’t yet seen a book showing a variety of children who had Down syndrome immersed in being children, so we created one.

It was a beautiful sunny day in June when I invited 10 children to the farm to have a photo shoot. It was fun and lively and the result was a beautiful picture book that anyone can enjoy. There is no mention of Down syndrome, but for those unfamiliar with the genetic condition, one will see the pure joy of childhood. Those who are touched by Down syndrome can be encouraged by seeing so many young children together in one place enjoying their adventures. The storyline is simple, with rhyme and cadence that begs to be read aloud. I would have been wonderfully impacted by seeing something like this when we first got our son’s diagnosis, I don’t know that I had ever seen more than one child with Down syndrome before he was born, let alone 10 in one children’s book. My hope is that this book will open the door to conversations, that it will be used in classrooms when the topic of diversity comes up, that new parents will be given a copy to see the abilities and adventure awaiting them regardless of a Down syndrome diagnosis.

Our book is available on Amazon beginning on World Down Syndrome day (March 21, 2018) and we would love for the world to embrace our lovely children.