World Down syndrome Day 3.21

#World Down Syndrome Day – 3.21

As we celebrate World ?Down Syndrome Day, I wanted to take a moment to share my experience as a mother. Raising a child with Down syndrome has challenged me to think differently about what success means, and to focus on the things that truly matter. It has also given me the opportunity to connect with an incredible community of people who share similar experiences and who are dedicated to promoting awareness and acceptance. And it’s also been challenging, to say the least.

Katelynn and I are truth tellers. We want to share both the good and the bad and provide hope for her community about the world she's often excluded from.

I recently had a conversation with another mother who also has a child with Down syndrome, and it made me pause and reflect on the life of my daughter and how our journey together has helped shape who I am today. The courage it takes to raise a child like Katelynn is the fire inside me that fuels everything I do.

When Katelynn was born, though, it was scary and not celebratory. Her delivery was met with utter silence by the medical team. They whisked her away to the ICU and it wasn’t until I grabbed someone’s scrub and asked if everything was okay, that I learned that my little baby girl had Down syndrome. My heart felt like it just gave up and I choked on my own tears. I couldn’t speak or clear my throat. I had no idea what Down syndrome meant. I was terrified and filled with grief. What did this mean? How could this be? I was so scared. I was scared to go home.

When I finally got to meet her in the hospital, I vowed that I would never waver in my love and support for her. And I’ve made good on that promise. I didn’t know what kind of support I would need. And it turns out, I needed a lot.

Thankfully, my mother moved in to help, and we made it through those early, swirling months. Katelynn grew and thrived, but I compared to other children, and watcher her developmental milestones like a hawk. Gradually, I met other families with kids like mine. I discovered Gigi’s Playhouse, which was a lifesaver. There, I was able to be around other adorable kids with Down syndrome and meet the mothers who move mountains to get them what they need. I now find it a privilege to love someone so different from me. And I have learned to understand, truly, what real acceptance means and to be fundamentally okay with the fact that everyone is different and unique.

Before I knew better, I was filled with fear. Everything seemed to hinge on how fragile I thought she was. I used to treat Katelynn like she was a glass ball, which was exhausting. But I’ve learned that she’s resilient and won’t break. And I’ve moved from fear to courage. I’ve learned to listen to her and include her in deciding what she does. Now, we’re partners, and our relationship is more balanced. And while she’s her own best advocate, doors don’t just open for her. Sometimes I feel like a bulldozer clearing the path so she can keep moving forward. I have to say, that in those first tear-filled, devasting minutes of her life, I never imagined she’d be a cheerleader, on the swim team, and auditioning for the school play. She has no self-doubt, and I never want to dim her light.

Now that Katelynn is a teenager, we face new challenges. And some days truly suck. I’ve learned, unfortunately, that for people like Katelynn, membership doesn’t equal friendship. School is hard. She doesn’t have many friends, and she can be lonely and sad. She posts comments and follows her “friends” on social media — and no one responds. It’s tough. There’s something so missing in our culture that makes inclusion so difficult. We have a lot of work to do to educate our general ed population. And we need to do that work every single day. My daughter’s life and happiness depend on it.

The mother I spoke to shared stories like mine. She also asked me if I could offer any advice to parents who have just learned of their child's Down syndrome diagnosis. I would say: Congratulations! You are not alone. Don't chase milestones or compare your child to others, and most importantly, get help and build a team.

Here are two of my favorite initiatives that help families like mine: Gigi’s Playhouse and Center for Enriched Living.

Let's continue to promote acceptance and support each other on this journey, and work hard to create more diverse and inclusive communities. #acceptance #worlddownsyndromeday