One Single Piece of Advice I’d Offer All New Parents of Children With Down Syndrome

Welcome! You are now officially members of the club we like to call, “The Lucky Few.” Membership perks include: extended snuggles, celebrating every single milestone, beautiful almond-shaped eyes that will take your breath away when you least expect it and the knowing smiles from strangers on the street that act as our secret handshake — they’re part of the club, too, and just want you to remember you’re never alone.

Baby girl smiling

If I can give you one single piece of advice, it would be to make this your mantra: “Everything is possible.” I know the phrase is usually “anything is possible,” but when speaking about our life with our daughter, Lily, I never liked the way it implied there may be some things that weren’t possible. Lily is living proof that everything is.

Here is where I have to let you in on a tiny secret: Lily is adopted. My wife, Jessica, and I knew we always wanted to build our family through adoption, and we have a background of working with people with special needs. When you choose adoption, there is a list of questions a social worker goes through. For us, the question, “Would you accept a child with Down syndrome?” was the easy one because it was a world we already knew and less intimidating than the complete unknown.

This is where I commend you. Joining this club is so different for every single person, and maybe this is your scary unknown, but you’re here, and if you’re here, then you’ve taken the first steps to face the scary and embrace the adventure. 

Perhaps you’re having trouble imagining what life is going to look like in two weeks or even five years down the road, but the fact that you’re trying to picture it is a great start. Try to remember not to compare — that no two children are the same, and that includes two children with Down syndrome.

Girl on the sand near the ocean shore

Lily, like so many other children with Down syndrome, also has a congenital heart defect which, at 7 months old, led to a cardiac arrest and a brain injury that caused her developmental to restart. At 5 years old, she’s just beginning to walk with the help of a walker or some guiding hands and is working on how to communicate with us through more than just giggles or tears. For two people who thought we knew all about the road we had chosen, we suddenly found ourselves facing the complete unknown.

Girl using her walker outside

There are days the road has seemed long and impossible; days when we’ve sat her down beside her peers and almost cried seeing how far apart they were in their skill levels.  It’s so easy to watch two children playing side by side and get overwhelmed at the differences. Those are the times we’ve needed to remind ourselves of our mantra — that everything is possible. In our house, we call it “Lily Time,” and we use it to remind ourselves that Lily will do everything as long as we allow her to do it in “Lily Time.”

Girl sitting on the steps

I’m not saying to ignore the voices of the therapists and doctors who are helping you along the way. I’m just suggesting that sometimes you need to throw away the charts and the calendars and just watch. Take the time to look backwards and see how far you’ve all come since the day you first joined this club, and choose to celebrate that instead of trying to figure out what comes next.

For the number of days we’ve felt frustrated, there have been hundreds more filled with giggles and hugs; days filled with an absolute pure joy at being part of a club that truly allows you to witness that everything is possible.

Follow this journey on Giggles and Hugs.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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