Marci + Freya: Journey With CdLS

Written by: Marci Dunning

My name is Marci. I spend hours everyday trying to convince complete strangers that my daughter's life has value and purpose.  That she deserves to take up space just as much as any other human on this planet.  Sometimes I have to convince friends and family of the same thing, but I'm getting ahead of myself.

This is my daughter Freya. She is my youngest of four children. She is 4 years old. She has the most infectious smile. She loves to play, eat, go through the car wash, swing at the playground, and generally enjoys most things a typical 4-year-old would. However she is anything but typical. She has a rare syndrome called Cornelia de Lange Syndrome.  This affects her growth and development. It is the reason she has a limb difference we lovingly call her lucky arm. CdLS has touched every part of her life and will continue to do so every day she is alive.

When Freya was a year old, and I myself had stopped trying to convince myself that everything was "okay" and "normal" I went to Instagram to find other families that looked like mine.  Maybe a mom that had a couple of kids, one with a very specific rare syndrome, would be sharing their story publicly and could show me what my life would look like a couple years from now.  Maybe, just maybe, she could show me that me and my family would in fact be okay. I found no one.  Not one family with multiple kids, one with CdLS, was sharing their story publicly.

I was devastated.  How in this social media world was no one sharing? Who would show me it would be okay?  Then a thought hit me. What if I could be the person I so needed? What if I could somehow reach back in time and pull the exhausted, grief-stricken, sleep-deprived Marci off the floor and tell her it would be okay. Obviously I couldn't do that, but I could start sharing our life and maybe just maybe I could show the mom that just got her child's CdLS diagnosis that life was going to be okay. 

So I set up @Freyasluckyarm on Instagram and started doing just that.  I shared therapy moments. I shared my kids interacting with their sister. I shared family activities. I shared myself crying over Freya not gaining weight. I shared everything.

I was met with a lot of positive comments. People telling me how great of a mother I was. How cute Freya was. How they loved to see her face everyday on their Instagram feeds. I was elated. 

Of course I got my fair share of hate comments.  People being mean just to be mean. People just trying to get a rise out of anyone for their own pleasure.  I expected these comments, and honestly they didn't bother me.  What I did not expect were some of the people who told me that they loved seeing Freya on their feeds telling me if they were pregnant with a child with Cornelia de Lange Syndrome they would choose not to have them. They still personally did not think that a child like Freya would add value to their own lives. These comments are the ones that haunt me.  

Am I truly making a difference in sharing our story?

Do people see my life and think I am the great one, I am the saint, but still don't see Freya's value?

Should I even keep posting?

And then I will get a message from a parent that just got a diagnosis of Cornelia de Lange Syndrome for their child. They are scared. They feel alone. They have been down the rabbit hole of worst-case scenarios the doctors have laid out in front of them. Then they see Freya's smiling face, and think just for a moment that everything will be okay.

This is what keeps me going. This is why I do what I do. It is not for my family. It is not for strangers on the internet. It is for the Mom crying alone in her closet because her life is being shattered with a life-changing diagnosis for one of her children. It is for her, because she is me. Both of us need to know everything will be okay.

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Many thanks to Marci for sharing this piece for CdLS Awareness Day!