One Mom’s Advice to a Parent Who’s Just Received the Down Syndrome Diagnosis

Meet Dawn Alsept — wife, mother of six, proud homeschooler, homesteader, and author. In 2016, she became a passionate advocate as well, after her life took an unexpected turn. That was the year Dawn gave birth to her sixth child, Cedar, who has a genetic condition known as trisomy 21, or more commonly, Down syndrome.

It was also the year Dawn learned how to conquer fear and embrace love — a love she never expected to experience. But in the beginning of Cedar’s story, it was difficult to see the overwhelming love and adventure waiting for her.

During her pregnancy, she was offered many prenatal medical tests, but declined them, and her ultrasounds did not show any markers for Down syndrome. She admits that, “It never crossed my mind that we would have a child with special needs. That is something that happens to ‘other people,’ not us.”

And yet, it became obvious soon after Cedar’s birth that something was different. Dawn says that “when Cedar was born, my husband and I both saw a uniqueness in his appearance. We suspicioned Down syndrome, but if I am completely honest, the thought terrified me, so I was in denial.”

It’s ok to feel afraid.

Dawn found herself terribly afraid and unable to completely process the situation life had suddenly placed before her. Her powerful words reflect this, especially after Cedar’s diagnosis was confirmed two days after his birth:

The overarching feeling that permeated every cell of my body was fear. I was terrified of the unknown…the fear that the life I knew and loved was being snatched from me, and I was going to be left with nothing but sadness and uncertainty.

I was scared of the 15-year-old Cedar, the 30-year-old Cedar, and the Cedar who would be here long after my husband and I are gone…it was impacting my ability to be in love with the newborn Cedar who was sleeping peacefully in my arms.

Dawn​ says she felt this fear despite her pediatrician’s “grace in delivering the diagnosis…[which] I will forever be grateful for.”

After a couple weeks passed, a turning point arrived. Dawn fell back on her passion​ f​or writing and sat down to continue working on her homesteading blog. But she ended up pouring her feelings and experience with Cedar and his diagnosis into a blog ​post ​instead.

My outlook changed about two weeks in…I think it was really when I sat down to try to get back into my old groove of writing…What came out when I sat down was ​the very first post​ detailing what I was feeling and going through. The moment I pushed myself away from the computer and hit publish, I felt this huge burden slowly start to ease off of my body.

That post changed everything. Within two days, a mother in England reached out to Dawn, incredibly thankful to have found another mom who was going through the same struggle.

“I figured if I knew so little and felt so much fear, because of my own ignorance, there had to be others like me,” she once wrote. 

She was right.

And so the idea for her blog about family life with a child with Down syndrome, Cedar’s Story, was born. It would be a place to share not only Cedar’s story, but the “the stories of others who were on this path too.” And in that place of community and storytelling, Dawn found comfort and the power to positively impact the lives of others.

When I was processing Cedar’s diagnosis, I felt so alone and scared. I didn’t want any other mom to feel the way I was feeling. I wanted other moms…to know that it was going to be okay and that they were not alone.

Cedar’s Story is a place to educate and encourage you if you find yourself in that same isolating room of fear. Dawn wants parents adjusting to a Down syndrome diagnosis to consider two pieces​ o​ f advice:

Your baby is going to be the light of your life. Remember that they are your precious child, not a diagnosis.

Reach out to a parent of a child with Down syndrome to see what life with trisomy 21 is really like.

Your child will live a rich life.

Dawn has been joyfully surprised to find that a life impacted by Down syndrome is beautiful. And that “Cedar is not suffering.”

I was suffering for not knowing such a pure and beautiful soul that would literally capture my heart and make me decide to change the world for him and others like him…I will change the world and show others that his life is just as valuable, needed, and worthy as any other.

This conviction inspires her to spread a message of hope and courage to help new mothers choose life when facing an unexpected prenatal diagnosis. In the United States, 67% of babies prenatally diagnosed with Down syndrome are aborted — making Cedar one of the lucky survivors. Even though this statistic breaks her heart, Dawn understands why women feel driven to choose abortion. To those mothers considering termination, she offers these words of encouragement.

There is an entire community that will welcome you like you cannot even imagine. This path is not lonely, and there is so much support available to you — if you will just reach out and tell someone what you are feeling.

There are many misconceptions about life with a child with Down syndrome that often breed intense fear. Society assumes that people with Down syndrome will live a “sad and hard” life, but this is far from true. “Cedar has brought more joy and laughter into our home than I could have imagined. His smile and giggle is infectious, he loves big and shows the world his joy, even to complete strangers.”

And yet, there is no doubt that Cedar has changed Dawn’s life and the life of her family. After his birth, their world was different. But unexpected change, the unknown, and even a genetic condition can become a “gift you didn’t know you needed,” if you can strive to see past fear and choose love.

Unexpected change, the unknown, and even a genetic condition can become a “gift you didn’t know you needed,” if you can strive to see past fear and choose love.

Dawn asserts that “having Cedar has forever changed who I am both as a person and a mother.” Before her son, she didn’t reach out to the special needs community. “Truthfully, it was because I didn’t know what to say, which made me uncomfortable.”

Now, Dawn is a passionate advocate fighting for the world to see the worth of individuals with Down syndrome​.​ Individuals like Cedar. Because “there is no less value in Cedar’s life than in anyone else’s, and the statistics that scream otherwise break me.”

It is therefore no surprise that Cedar has deeply impacted his five siblings as well. She gushes that “they are all intensely involved in his successes, and it has shaped the career paths of at least two of my older children.”

You won’t want to change your child for the world.

Given the choice, Dawn “wouldn’t change Cedar, even if given the chance.” She would rather change the world and its perception of individuals with Down syndrome instead. People like Cedar can teach us something too. Something that isn’t terrifying, but beautiful.

Though he has what is considered an intellectual disability, he has an emotional intelligence that is uniquely beautiful. Individuals with Down Syndrome are not a burden, and they are here to teach us to see life through a different lens.

This lens can teach us to “stop and see the beauty around you instead of hurrying along at warp speed.” Cedar has taught his mother to see “beauty in places I don’t often look, and he shows me that everyone needs a little of his joy.”

It’s an education that you cannot get anywhere else, and I want the world to know that if they befriend someone with Down syndrome, they too can be taught about the beauty in simplicity.

Welcome to our family.

Dawn’s main platform for her advocacy, her blog, Cedar’s Story, has touched thousands of people and families all around the world. It equips them with resources to defeat fear and embrace the same joy she has experienced with her son. 

It is the messages from new parents who are still grieving and teary-eyed that I value most…it was about a year into the blog, and a mom reached out to say that she had decided against termination of her unborn child…she had devoured all the information she stumbled across on our…blog and had been given a glimpse into this life with a child who has Down syndrome.

This mother’s biggest fear was​ ​that her child would suffer. But what she found as she read Dawn’s blog was that “Cedar, and the other children…did not appear to be suffering.”

Children and families are not suffering. Instead, those who explore Cedar’s Story will find joy and honest testimonies that contradict the larger narrative about lives impacted by Down syndrome. These families find strong community, mutual understanding, and a courage that overcomes fear. And most importantly, they discover an overwhelming love in a most unexpected way.

To follow along with Dawn’s journey and get plugged into the Down syndrome community, visit Cedar’s Story or join the conversation on instagram at @cedarsstory.

This piece was written as a part of the Extraordinary Human campaign by Voices for the Voiceless to celebrate World Down Syndrome Day.