What should I say to parents who have a baby with DS?

When I have to carry both boys in public (almost always) I rely on the Boba wrap for Ezra and carry Henry on my hip because he is not walking independently yet. So with Ezra forward facing in the Boba wrap and Henry on my hip, the three of us set out on an errand. A woman commented that I have my hands full. Yes. Breathing hard, I laugh. She says they are cute. I agree. Then she asks how the baby is. I say fine. I genuinely don’t realize what she is asking for a few seconds.

The lady says, “No, no, no. Is the baby healthy?” She’s not being ugly or cruel. I told her Ezra has 46 chromosomes and not 47 like Henry, but they are both healthy. She nods slowly with a sad smile and expresses her love for her daughter “even though she has DS.” She asked if I knew the odds of having another with DS and expressed genuine fear at thoughts of expanding her family.

We have something in common. We both have toddlers. They both have Down syndrome. They are both our first born.

I couldn’t help but wonder how her friends and family welcomed her daughter in the world. Everyone’s journey is different, but I just can’t shake that maybe she heard more negative than positive. I saw her eyes. She carried hurt that day. I couldn’t do anything but remark on her daughter’s beauty. My heart still carries this interaction a month later.

So my advice on how to react to a baby with Down Syndrome is as follows: Be excited! New life is incredible! It is appropriate to say, “Congratulations on the birth of your baby!” when a baby is born with Down syndrome. You may say anything you would say to anyone else! “Wow! Congratulations! He/she is beautiful! Yay!”

Never offer “I’m sorry” in response to learning a child has an extra chromosome. There is nothing to be sorry for; All life is worth celebrating. Be positive with your body language too! Everyone has a different road to acceptance with their diagnosis and some may still be working through it! Don’t assume anything. If the family begins a conversation about DS, join in! If not, just stick with the positive statements you’d make anyway!

Don’t go silent! Ask about how their child is doing. Every parent loves to gush over their little love regardless of their “atypical” label. Our son is incredible- his personality is a blast! We love to talk about him!

At first, we confirmed diagnosis only to our immediate family. We were still working through getting adjusted and bonding as a new family: party of three. Adjustment as a new family is a journey in and of itself without additional diagnosis. We just wanted to make all our attention towards getting to know and loving Henry. And I wanted everyone to be excited and get to know and love Henry without putting any stigma on him.

I was so afraid of negative reactions to his diagnosis: I only wanted positive vibes in our home. Until I could find my footing as a new mother for Henry and be empowered and strong as his mother, I didn’t feel I could make any public announcements about his extra chromosome. So we made no public declarations, stayed pretty silent on all of the social media outlets, and did not participate in any of the Down Syndrome celebration or awareness events for his entire first year. Whichever way parents need to adjust is okay, but still send warm wishes to the new family no matter what!

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