Dear New Mom in the Down Syndrome World,

Dear New Mom in the Down Syndrome World,

Congratulations! Welcome to our community. If you’re anything like I was, that comment probably just evoked an eye roll. I wasn’t much of a joiner in the beginning and you don’t have to be either. Maybe you are a joiner and want to dive in. Do what’s best for you. No matter what, we will always be here.

You can do this. Maybe, you are devastated. Maybe, you don’t know what you are feeling. Either way, process your own emotions. Allow yourself to be disappointed. Allow yourself to be joyful. I promise there will be so many joys. This baby is more alike than different. Don’t feel guilty. You didn’t expect this, and you can’t be expected to accept it overnight. It will take time, and that’s okay. I promise you, that if you put one foot in front of the other, you will get to the other side. Some people get there quickly, while others arrive later.

People are going to overwhelm you with information. Do not put too much pressure on yourself to know everything. You have time to figure it out. Contact your local Down syndrome organization and listen to them. They will provide you with the local resources you need. If you are a social media person, join a DSDN (Down Syndrome Diagnosis Network) birth group. They will connect you with other moms who recently had babies with Down syndrome. You can go there and know it’s a safe place to ask questions. There will be questions.

Doctors will not have all of the answers. I hope your child’s diagnosis was delivered in a positive manner. The perinatologist who delivered the news to me did so in a negative way. He painted a very bleak picture of life with a child with Down syndrome. He was misinformed. There are amazing doctors out there, but you will meet doctors who don’t realize our kids’ worth. It is now your job to shout their worth right alongside us.

Our doctor told us that Sienna would be delayed in talking, walking, and all of her milestones. She just turned 2 years old. She can identify and say 10-15 letters. She can count to 5. She is speaking in 2-3 word phrases. She is not walking, but she is on the go. I celebrate every movement and it has made our days full of joy, laughter, and shouting.

If you want to breastfeed, we have the resources to help. You can do it. It might not be easy, but it absolutely can be done. Here is a link to my breastfeeding journey. I can help and get you connected to other moms who can help as well.

There are lots of unknowns and the medical protocol can overwhelm a new parent. Do not look too far ahead. Celebrate each day. You will learn to slow down and it will be a welcome change in pace. The dreams you have for your family do not need to change. You will have bigger obstacles to overcome, but you will have bigger celebrations. Life’s most ordinary moments will become extraordinary.

Below is one of our favorite essays about this journey you find yourself on. We hope you enjoy it as much as we do. We have been to Italy and Holland and we adore them both for different reasons.

Written by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.



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  1. Thank you so much for this blog post! It very much hits home for me. Throughout my entire pregnancy, we were told that everything looked good, right up until the doctor noticed Theo has a right sided aortic arch. My husband even asked if there were a chance Theo might have DS because this heart defect is common amongst babies with DS and we were told no. The doctor said not to worry about that because of the results from our second trimester screening.
    Getting the news that our little guy has DS felt like a wrecking ball hitting me in the chest. Everyday that passed, though, things got better, the pain eased. It’s people like you, who share their experience that make the news easier to bare. Because of posts like this one, I know that I’m not a bad person for the feelings I felt and for that I thank you.

    1. Oh honey, I am so glad that you read it. Your feelings are completely normal and you should be so very kind to yourself. When Sienna’s diagnosis was delivered, it felt like a cruel joke. I processed many emotions and went through a grief cycle. Time gives us the gift of perspective. I know we are local to each other, so if you ever want to get together for coffee or wine, I am completely open to it. I love supporting new moms. You are in for an amazing journey.

  2. I really enjoyed reading your blog. My kids are now 18 and 14, but the journey still has its rough spots, and I can still use some encouragement.
    I felt so alone with my daughter, but by the time my son was born 4 yrs later, I was an old hand. Having two biological children with Down Syndrome and Autism keeps me literally on my toes. I think I was blessed to get to raise two kids with DS. I think God really had trust in me.
    Thanks for your story. It was really uplifting.

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