Where I Found Support When My Daughter was Diagnosed with Down Syndrome

My typical response to any life event is to talk about it. Good, bad or ugly – I’m an open book. Our experiences shape who we are. If we want to be seen and understood, my belief is we shouldn’t be denying or hiding the events that shape our character and make up the pages of our life story.

When my daughter was born with a surprise Down Syndrome diagnosis, all these past open book behaviors disappeared. I felt like I had somehow lied to everyone for nine months. That the baby they had been waiting on didn’t arrive.  That they would reject her and blame me. I was in protection mode. I wanted to keep her and our family close, huddled in tight, safe from the world’s reaction to our new life.

It took me five months to publicly share her diagnosis.  The days and weeks leading up to that were the most anxiety-riddled days of my life.

 

Hiding from your truth, in any form, is the most painful thing I think one can do. No matter how harsh the judgment, keeping it inside is far worse in my experience. It’s a denial of self, of who you are and what you’re feeling. Come to find out, the world is a lot kinder than I gave it credit for.

 

 

My respite in the first five months of Rory’s life was found in the arms of strangers. When we came home from the hospital, I did what any respectable person living in the 21st century would do. I searched online for anything and everything Down Syndrome-related. And then, I went on Instagram and typed in all the hashtags (like #theluckyfew or #morealikethandifferent) I thought would be relevant to Down Syndrome. 

 

That’s when I found the light in all of the darkness. As I sat in a dark room lighted by the glowing screen of my phone, I scrolled for hours. With each swipe I found another brave family documenting their lives, loving children and siblings with Down Syndrome. Smiling babies, moms gushing over their sweet child, and siblings playing with their brother or sister filled the tiny squares on the screen. The words of the mothers behind each post were like a balm to the deep cuts on my heart.

 

These families shared the truth of Rory’s diagnosis with me. They showed me that life would still be good and joy would still be had. Social media gave me a direct connection to people living what I was just starting. I could ask questions, express fears, and join a community that I was once blind to.

 

I would post photos sharing my feelings and, within minutes, I would be found by a mama who had already gone before me or one who was walking the same timeline of events. These families welcomed us in, commenting, and encouraging me on each post.  They pointed me to resources and told me it was ok to feel the way I did. They told me my little girl was a gift when I thought the world would tell me she was a burden. It was so healing.

 

 

A sweet mom connected me to The Down Syndrome Diagnostic Network. The mission of Down Syndrome Diagnosis Network (DSDN) is to connect, support, and provide accurate information to families with a Down Syndrome diagnosis.  We had a poor diagnosis experience, followed by little direction on how to care for a child with Down Syndrome, and no connection to local families on a similar path.

The DSDN paired me with moms all over the world who shared my experience, along with the same birth year as my daughter. They also armed me with the tools to go back to my medical team and provide them with the resources needed to train their staff on delivering a compassionate diagnosis to future families. The DSDN closed Facebook group was my safe place to ask hard questions, share raw emotions, and receive advice regarding local medical and therapy options. These connections opened a floodgate of resources and information. From Facebook groups focused on interventions, therapies and diets to video testimonials from families who shared a similar diagnosis experience, this online community was invaluable to us.

 

On the path to healing, I gave myself milestones that I wanted to meet. They served as personal markers to know when I was walking out of the woods vs. lingering in the heaviness of my emotions. Before I could share Rory’s diagnosis, I wanted to be able to deliver the news in a confident manner. Most of my early confessions to close family and friends were met with tears and “I’m sorry”. I wanted to be able to stand strong and speak the words of our reality without crumbling into a ball of tears.

These online connections, and dare I say, friendships, made that possible. They knew what to say when very few in my physical presence did.

 

They knew though this experience was hard, it wasn’t going to be sad forever. My confidence in championing our new reality grew. My pride in my daughter increased as I grew to understand her diagnosis.

 

Social media provides me with a community of families that help our family navigate raising our daughter. Many I have met in person and talk to weekly, if not daily. Because of these women, my family and closest girlfriends, I no longer feel scared for Rory, our family, or myself.

I share our story in hopes to help the next mom scrolling the internet looking for something that will help her know that it really will be okay.  Each time I receive a DM from a mom, I feel so privileged to be in a position to offer her hope and am grateful to my daughter Rory for connecting me to people from all over the world.

 

If you’re looking for other Down Syndrome resources, check out the below.

 

  • The Down Syndrome Diagnostic Network  – The #1 resource.  Anything a parent who just received a diagnosis needs is here: practical advice, emotional support and more.
  • The Glory Days Co – This is my clothing brand dedicated to encouraging families with special needs children. On the site, you can download a guide to help moms with recently-diagnosed babies. In it, I list all the resources that helped me and including a list of Instagram accounts to follow.
  • Cedar’s Story – This blog is written by a former social worker whose sixth child was diagnosed with Down Syndrome. Here, she helps spread information, awareness, and others who, like her, are gifted a child with Down Syndrome.
  • Baby Lemonade Blog – Amber started her blog after her daughter, Kara, was born with Down Syndrome. She created the space to help families find Down Syndrome support, resources, and understanding.

 

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