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To All the Mamas Hearing Down Syndrome for the First Time

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To all the mamas who will hear the words “Down syndrome” for the first time this year — I need you to remember a few important things I’ve learned on this journey:

1. Your child will become your greatest teacher. You will watch this little person learn and master ways to adapt to fit into a world not made for them. It will astound you.

2. The milestones. Forget about them. Your child will do things in their time. Put the books down. Stop Googling and enjoy that little baby in front of you — exactly where they are and not what literature says about where they are “supposed to be.”

3. Your heart will break over and over again by the stereotypes held by society. It’s your job to help break down those barriers. You are now an advocate. Mama bear. Tiger Mama. You will grow to be passionate and you’ll become an expert on your child’s diagnosis.

4. Find your tribe. Lean on them. Love them hard. Confide in them. Cry with them. This is so important. They understand like no one else. And they need you, too.

5. It’s not all rainbows and unicorns. It can be so damn hard some days. And it’s OK to acknowledge it. But when those little lips utter the words “mama” for the first time, or your child reaches a milestone they’ve worked hard to achieve, your eyes will fill with tears. It’s like nothing else in this world. Relish in it.

6. Prepare yourself for the questions. People mean well, they really do. Ignorance is real and out there but you can grow thicker skin. You’ll learn to welcome this dialogue and encourage it in the future. Trust me on this.

7. Your child will find joy in all of life’s little pleasures. The sun on her face. A beautifully picked dandelion. Sand on her toes. Soon, you too will see the world through those rose-colored glasses. It will take your breath away and remind you of what truly is important in life.

8. Your child will connect with strangers from all walks of life. Learn from them. When she greets the cashier at the grocery store, you do too now. The lady at the local coffee shop drive-thru gets blown a kiss. Give her a good tip. Pay your child’s pure love and genuine joy forward — in any way you can. Imagine how much kinder the world could be.

9. Dance in the kitchen.

10. Take the bubble baths.

11. Happiness comes from within. Look deeply at your little person. See that happiness? It radiates and it looks good on you, too.

12. Lastly and most importantly, you can do this! You might not believe that now, but you will. The NICU stays, the weeks on end hospital stays. Sometimes the punches never stop coming, it seems. But when the dust settles and the appointments wind down and you catch your breath for a moment, give yourself the grace and look at the little person before you who has endured so much but still finds the joy every day.

You’ve got this, mama!

Originally published: May 4, 2021
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