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The Joys of Raising My Daughter With Down Syndrome

As I helped my daughter into her car seat yesterday morning and said goodbye to her and my husband, she looked at me, pointed to the front passenger seat, and said, “Mommy, sit there.”

Hazel’s language and communication skills are strong. At 3 years old, she often talks in three- and four-word phrases, sings words and short phrases of songs, and repeats words and sentences in favorite books. Hazel also “gets” so many things in our life, and I often look at my husband and say, “How did she remember that?” or “Did you hear what she just said?” Then there are the moments when she mimics my body language, crossing her arms and leaning on the table or putting her hands on her chin.

Just like me.

Hazel was born with Down syndrome, and her day-to-day life often reflects the challenges that accompany this diagnosis. From her first days of therapy at 7 weeks old and heart surgery at 2-and-a-half months old, to a significant delay in learning to walk and still-lingering questions about the extent of her cognitive delays, Down syndrome is a normal in Hazel’s life and in our family’s life. She currently has six therapy sessions a week and average one to two medical appointments a month.

As first-time parents, raising a child with Down syndrome is our normal. The doctors’ appointments, therapy sessions, and challenges that often accompany a diagnosis are simply a part of life. And for the past three years, we have raised our daughter the only way we know how: as parents who love, show pride in and want the very best for our child.

Since we first arrived home from the hospital, my husband and I have been purposeful in our reading to Hazel and playing music for her. The result is a little girl who loves books, music and dancing. We have always taken Hazel with us to museums, walks through the city, outdoor festivals and to the local pool. We talk with her and ask her questions. We encourage Hazel each day to challenge and assert herself: to tell us what she wants, tell us what she needs, choose the clothes she wants to wear and the food she wants to eat, to question, to wonder, to be curious.

Today, Hazel is a sassy 3-year-old little girl who happens to have Down syndrome. She attends a typical daycare. She has friends at school and gets invited to birthday parties. She is a picky eater but loves yogurt, applesauce, pretzels, peanut butter and jelly sandwiches and cookies. She has meltdowns and tantrums. Hazel loves her dog and her cat. She adores her cousins. She is independent and strong-willed. She can be a mama’s girl. And Hazel really loves to talk.

We recently attended Hazel’s mid-year parent-teacher conference, and we are so proud of our daughter’s accomplishments. Hazel is doing well. She loves art. She remembers characters and words from books. She engages more and more with her peers. She know the class routine. She’s thriving in an environment that provides her with structure and routine as well as support, challenges and love.

As parents, we are not perfect. We make mistakes. We get upset. We become overwhelmed. But then, at the end of the day when we put Hazel to bed, we hear, “my mommy, my daddy,” and we know we are doing something right.