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How A Baby’s Diagnosis Made His Mom Want to Change the World

Down Syndrome

Dawn Alsept

A Life Changing Diagnosis

I gave birth to our 6th child with the expectation of adding another beautifully brown eyed, boisterous personality-laden child to this world.  I thought I had this raising babies thing down pat, most moms don’t do it six times, so I knew what to expect, or so I thought.

When my Cedar was born he had a surprise to share with us.  He was born with Down syndrome, a fact that had been hidden from us until the moment of his birth.  When those two words were placed squarely in my lap, I was overcome with fear, grief- dare I say even terror of what this life was now going to be like.  I felt life as I knew it was slipping through my fingers and I would never again be filled with joy and happiness.

Coming to Terms with the Diagnosis

I knew nothing of Down Syndrome except for the intellectual delays, the noticeable physical characteristics, and the stereotypes. I learned very quickly that even Google was not on my side, the information I found scared me more than comforted me.  I cried so many tears that my face threatened to remain crimson, and my red sore eyes were glassy and red-rimmed. My fears came in waves as I was scared of the 16-year-old Cedar I had yet to meet, the 30-year-old Cedar who may not carry on a typical conversation, and the 45-year-old Cedar who might be here alone when I am gone.  All of these fears while looking down at the peaceful, angelic face of a babe newly born and weighing 8 little pounds. I prayed, cried, read, and hugged this tiny human.  I slowly began to realize that this babe in my arms was not scary and was nothing to be feared.  In fact, this tiny human was going to teach me as much as I hoped to teach him. Each day I became stronger, I found other families who were in the same place I was, had been the same place I came from, and were moving forward to the place I wanted to be…at peace and smiling once again.  I searched out and found pictures of children who had Down syndrome that were smiling, reading, swimming, laughing, going to school, visiting the zoo, and just being children.  What I didn’t find was all of this hope in one place.  I had to search for it, I had to put together endless key words and search past the initial pages that popped up in Google searches to find the true stories of families raising children like my Cedar.  They were like hope in breadcrumbs scattered here and there for me to find and grasp tightly to. That is when Cedar’s Story started to form at the edges of my mind.  What if I could help the next mom who was glassy-eyed, fear-filled and seemingly alone?  What if she could find that other moms had felt the same feelings as she did, what if she could see beautiful families moving forward?  What if she could find answers that were not sterile and full of medical jargon that she would glaze over in an effort to understand? I wanted to help that new mom and I wanted to educate others, surely there were people as ignorant as I had been.  I wanted them to see not just my child, but also others like him, and recognize them as beautiful humans, not just diagnoses.  I wanted them to see Down Syndrome and think hope, tenacity, confidence, kindness, joy, and amazement.  In short, I wanted to change how the world saw Down syndrome, I wanted to change perceptions.  It was then that I realized my son was changing me in ways I didn’t know possible.  His birth and diagnosis was going to have an impact far beyond the reach of just our immediate circles.  He himself was going to change perceptions and I was going to help with the platform to do so.

Cedar's Story

I had already been an established blogger for a number of years, I knew how to reach people, and so that is what we did. With prayer, and urging, we launched the Cedarsstory.com website in March 2017 and within 30 days we had hit over 20,000 views.  I began receiving messages from women around the world (Philippenes, China, England, Africa and so many more) saying that they were finding hope.  It is with the generosity of a whole community that this is happening, the site shares stories from families around the world from diagnosis to topics that interest those raising someone with Down syndrome.  It is the collaboration of many families, I was just able to help provide the platform to spread the stories. 

So, Cedar was born, a website was launched, a community was knit even more closely than before and all because of a diagnosis.  Down syndrome is not to be feared, it can be a beautiful journey and this little boy is teaching his mom just that. I want to change the world for this little boy, and all the others like him. Visit our blog: http://www.cedarsstory.com

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