What Every Parent Who Has a Baby With Down Syndrome Should Know


I almost always think of the new mom… the pregnant mom… the twosome that suddenly turned into a threesome and then got a big surprise…

Down syndrome snuck into the room.

“Go away, right now.,” they want to scream. “We want our perfect baby.” “We want a trouble-free childhood.”

Milestones met easily. No difficult conversations. No messy situations.

But Down syndrome is stubborn… and it will not be leaving the party.

Those new parents will hear all of the difficulties up front. A doctor or geneticist will think they are being kind and they will lay out as if it were the assortment of utensils used in a famous “Downton Abbey” dinner, the numerous potential difficulties of life with Down syndrome.

I often wonder how parents of typical infants would react if they, too, were seated and forced to listen to all of the difficulties that their children may face. What would they say? Their faces squinty-eyed, searching their tiny treasure for any sign that the potential things listed might be present right this very minute or showing up at any moment.

I get it.

I was you once, searching for other families with three children and looking at them longingly. Why isn’t my family like that? Get this interloper out now.

On this day, I’d like to offer up some truth. I’ve been hanging around people with Down syndrome on a regular basis for fifteen years.

Down syndrome is not a rude guest.

Down syndrome provides you with something you may never have had before: glittering eyes.

roald dahl glittering eyes quote

Down syndrome is full of magic… so unlikely, so improbable, that people discount it and never notice.

If you are pals with Down syndrome, you see miracles. Full fledged miracles. Frequently.

You see the tenderness and joy that is so raw and so real that it takes your breath away.

You see the power of hope.

You witness just how powerful love really is. You see people dealing with adversity in a humble, stoic way. They just deal with it. Don’t belabor it. Courage in every way.

You learn how to live in this moment right now… not rehashing the past or planning the future. Right now. Turns out that’s what matters.

It just so happened that World Down Syndrome Day aligned with Patrick’s one and only basketball tournament with Special Olympics.

He got himself up and ready and filled up the water bottle. We listened to songs to pump ourselves up. We put our game faces on.

Only that’s not a thing in Special Olympics because when you walk out, your teammates are loose and ready and oh so happy to see you. Cheering for you, actually.

They might be wearing fox ears. They could be needing a new jersey. They might be talking to themselves… or have anger issues. But the rag tag group is a team and they are happy for the opportunity.

Watching Patrick play basketball, none of it is easy. The player whose vision prevents him from being able to dribble in any way. The player who likes to defend a little too enthusiastically. The player who has a sweet shot from only one tiny spot on the court… but when it gets up… when it has a chance to fly, man, it’s nothing but net.

In these games, every point is hard won. Nothing comes easy. Even taking the ball inbound can be tricky. The scores are low — but the spirits are high.

Miraculously, Patrick’s team won their second round of games and they would be playing the
Gold Medal Game! We came home, gathered the troops and went back for the game.

The stands were full. The players were ready; nothing had changed. No stressful coaching talks. No pressure from the other players or the parents to perform. Just another game.

The teams were very evenly matched. There were miracle shots on both sides. There was joy and acceptance and fun — cheers from the crowd and high fives from friends. Double overtime. Down from behind. Patrick’s team recovers and impossibly shoots to win, with seconds left. It was a Gold Medal Moment.

I squished that moment in my heart. Tried to feel it and know its smoothness. I had my parents cheering, my children cheering, my husband cheering…

I wanted to transport any new parent and
like the Ghost of Christmas Future show you what you are in for…

Down syndrome is a glue. It’s sticky and attracts the most amazing people.

People like Patrick’s Special Olympics basketball coach who, on his first day of spring break as a junior high teacher of students with disabilities, is front and center organizing the groups and passing out jerseys.

People who have at their core a deep understanding of what matters. What’s real. What’s important.

That glitter glue attracts people who are: selfless; honest; trustworthy; dependable; loving; optimistic; encouraging; and problem-solvers. People who get stuff done.

Our family went to see the new Cinderella movie. It’s a beautiful escape with a wonderful message:

Have courage, be kind and find a little bit of magic.

Those words are my truth. That is the definition of Down syndrome: courage, kindness, magic.

New momma, you are in for some serious magic. But you must take your glittering eyes and really see. In the most unlikely of places, with the most unlikely of people,
you will be blessed.

Blessed by love, kindness, friendship and the clarity to see what counts.

I wish for you not just a Gold Medal World Down Syndrome Day; I wish for you a glittering, gold medal Down syndrome life.

This post originally appeared on Grace In The Ordinary.

TOPICS
JOIN THE CONVERSATION

Related to Down Syndrome

My Answer to the Question, ‘Will He Ever Get Married?’

In our bedroom, our vows hang at the center. They are the first thing we see when we wake up and the last thing we see before shutting our eyes at night. I heard a rabbi say once that “Marriage is not the most important thing, it is the only important thing.” It’s a big statement, but [...]

Our Daughter's Short Life Taught Us So Much About Joy

Dear Down Syndrome, You snuck into our lives quietly alongside several scary diagnoses our baby girl received. We knew nothing about you except that surgery could not “fix” you. For this reason, we feared you the most. We began to research what you would mean for our daughter’s life and became even more frightened. The [...]

What I Realized When My Son With Down Syndrome Gave Me Dandelions

Yesterday, my son, Kelly, came with a special gift for me. He’d carefully picked me a lovely bouquet… of dandelions. I have a bunch of kids, so this was not my first bouquet of dandelions, but it was my first bunch from Kelly. As I was putting the vase on my windowsill, it struck me [...]

When the Doctor Said ‘Sorry’ About My Daughter’s Extra Chromosome

Once upon a time, shortly after KC was born, we saw a geneticist. He concluded our appointment by telling us he was “sorry” about KC’s diagnosis and that if he could “push a magic cure button” for us, he would. Needless to say, we haven’t been back to see him since. But if I did [...]