THE BLOG
05/29/2016 08:33 pm ET Updated Dec 06, 2017

My Daughter, My Hero

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Here's a recurring scene in our kitchen: my vibrant 6-year-old daughter on her step stool, elbows on the kitchen counter waiting for Mommy to gather recipe ingredients. She taps out a drum rhythm with her measuring cup, eager to dump flour into the large bowl in front of her. I get lost for a moment, looking at this little beauty in front of me. I don't take one single moment for granted, considering the journey we've been through together.

When I found out I was pregnant with Anya, I was excited and nervous at the same time. It made me grow up overnight knowing I would be responsible for raising a child. I began to relax into it and enjoy the pregnancy, writing down possible baby names. I sang lullabies to the new life in my belly. I followed the weekly "How big is your baby?" stages of development in food terms. "Now the baby is as big as a blueberry, a cherry, a kumquat..."

Because I was over 35, it was recommended that I have a CVS test to rule out any birth defects or genetic issues with the baby. I almost didn't go since I was so sure that everything was fine.

I still remember the day I received the results. "The baby tested positive for Down Syndrome." Jumbled sounds echoed through my head. I was in complete shock and couldn't find words to respond. I felt dizzy as I clutched the phone. I asked softly, "Is it a boy or girl?"

When the woman told me that I was having a girl, I collapsed to the floor and burst into tears. I was growing this precious life inside of me and was in love with her already. I was also suddenly afraid of all the unknowns. Anya's father and I had separated early into the pregnancy, so doing this as a single mother only added to my fears.

Immediately I began scouring the internet to find out everything I possibly could about Down Syndrome. What would her life be like? How could I best prepare as her mother? The information was conflicting and not very reassuring. So I called the National Down Syndrome Society to see if I could attend a social or support group. They connected me to an amazing group of parents who completely changed my outlook.

One summer day I went to the group's annual pool party in Bucks County, PA, and got a chance to meet all of their beautiful children. For some reason, up to that time I had never had the opportunity to even meet anyone with Down Syndrome. The kids were running around, swimming and splashing, and I felt so reassured to see their joyful playfulness.

That winter Anya was born with four holes in her heart. She required a month in the NICU and, at just 12 weeks, she had open heart surgery. Over the next few years, Anya would require six more surgeries including several sets of ear tubes. She faced all of it with so much determination and courage, and I gave the very best of myself as her mom. As a baby she had the immune-boosting benefits of breastfeeding for 15 months exclusively through pumping and bottle transfers. And as she grew I always brought healthy, homemade food to the hospital, along with bags of toys and familiar blankets. The nurses even let me climb into her hospital bed next to her every chance I could.

Thankfully today she thrives. In addition to regular appointments with her pediatrician and specialists, I also take her to a holistic pediatrician for adjunctive therapies. I don't know what the future holds, but taking a comprehensive approach to Anya's well-being, one that includes natural approaches, empowers me. I give her daily massages, a super healthy diet and special supplements for kids with DS after I learned that the 21st chromosome requires unique vitamins to stay healthy.

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All mothers worry about their children, but when you have a child with special needs, that worry can get magnified. It's easy to start wondering if she'll get married, or drive, or who will take care of her when she gets older. These are concerns that I have to consciously keep in check each day, focusing on prayer, positive visualizations of her future and keeping a sense of humor and lightness with her. Rather than focusing on unpredictable circumstances, I shift my energy to the positive, and savor each moment in the now.

I'm raising this beautiful child to have the healthiest, brightest start possible. I'm so happy that she follows my example of living a healthy lifestyle and I make it my mission every day to be a better person as her mom and role model. Getting to where we are has had its challenges along the way, but I am immensely grateful for each step of the journey with Anya. In her six short years, she has taught me more about strength, courage, love, life and happiness than any other person. She is my hero and angel, and I'm excited for each day with her by my side.

Tap tap! Her measuring cup beats a little louder on the countertop, bringing me back into the present moment. We share a giggly hug and get back to baking, part of our daily magic together.