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What One Year With My Daughter With Down Syndrome Has Taught Me

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On September 20, 2016, at 5:38 p.m., my Hazel Elizabeth was born. And at that moment, I fell in love for the second time in my life.

My love for her has only grown since.

Hazel was born with Down syndrome and a serious heart defect. After five days in the hospital, four of them in the NICU for feeding and heart monitoring, Hazel came home with us. The next several weeks were a blur of doctors’ appointments, feedings every three hours, and daily phone calls to schedule appointments, secure Medicaid, and plan for Early Intervention. At 2 and 1/2 months old, Hazel was admitted to the hospital for heart failure and scheduled for heart surgery. Four days after surgery, Hazel was home, eating faster than she ever had and screaming louder than I ever thought possible.

But we all eventually readjusted to life at home, and life fell into a calmer pattern.

Hazel grew. She gained weight. The 3 a.m. feeding disappeared. Hazel’s neck got stronger. Her smile wider. She sat up a little, began eating vegetable purees and then graham crackers, and clapped for the first time.

The author's daughter, smiling, wearing a headband

My daughter has loved music since her first week at home, and at 11 months, she went to her first concert to see her favorite band. Hazel has loved books since I can remember. She has her go-to reads and her favorite characters. And she insists on turning the pages herself.

Hazel’s ridden the train and the subway. She’s walked through Central Park and Fairmount Park. She’s visited museums and gone out to dinner with Mom and Dad.

Hazel isn’t always so quick to give a smile. But you will get one eventually. Trust me. And it will be worth the wait.

So many milestones. So many firsts. So much personality. In just one year.

Watching my daughter over the past year has reminded me of several important things in life:

Treasure each day.

Applaud every first, every second, every third.

Never underestimate ability or will.

Smiles do count.

Laughter is contagious.

All you need is love.

The author holding her daughter outdoors in a park

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Originally published: September 25, 2017
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