September 2013

An unexpected path, an invaluable perspective

julia

For this family, one tiny extra chromosome led to a journey of self discovery

By Suzi Klimek

When our son was born, we prayed for a healthy baby with 10 fingers and 10 toes. Our prayers were answered. Three years later, those same prayers were said for baby number two. And, once again, our prayers were answered. Baby number two was also born with 10 fingers and 10 toes. But there was one microscopic addition: an extra copy of chromosome 21. Otherwise known as: Down syndrome.

Being told that your child was born this way—it was a shock. It’s just not something you think will happen to you.

I remember when the doctor came into my room. He sat down next to me and explained that our daughter likely had trisomy 21. I asked, “What is trisomy 21?”

At the time, my husband was at home with our 3-year-old son. I called him crying and confused. When he arrived at the hospital, he reassured me that everything was going to be OK.

“Julia is our daughter, and we love her unconditionally, so let’s just move forward and figure it out as we go,” he said.

I can’t say that I rolled with it quite the same way. I cried—a lot. I kept asking, “Why us?” People kept telling me, “God doesn’t give you more than you can handle.” And I would reply, “Well…I think God confused me with someone else!”

It wasn’t until I received the first sympathy card that it all made sense to me. I tried not to be offended as I knew the intention was good. It was then that I realized I didn’t have any reason to be sad. I was, and still am, blessed to have this child. She is our winning lottery ticket. But that didn’t mean it would be easy.

Within days of Julia’s birth, we were connected with the Indiana First Steps Early Intervention Program. Julia started physical therapy at four weeks old. Developmental, occupational, and speech therapies soon followed. Julia was not born with any additional medical needs. However, because most children with Down syndrome have hypotonia, or low muscle tone, we knew that needed to be addressed. Because of the hypotonia, our physical therapist said that Julia would benefit from supramalleolar orthoses (SMOs) to help her walk. She specifically recommended SureStep.

We are lucky to live near the SureStep corporate headquarters. Julia was 18 months old when she first started wearing SureStep SMOs, and she was walking shortly after that. Since then, she hasn’t stopped. Now 9 years old, she loves to play soccer, ride her bike, and climb on the playground jungle gym.

It’s funny how things happen for a reason. If it weren’t for Julia, my path would have never crossed with Bernie Veldman, owner and developer of SureStep, and I wouldn’t be the company’s executive director of marketing. I’m thankful that I can work for a company that is so passionate about helping children with special needs.

As people in our community meet Julia, they are drawn to her charming personality. She is a celebrity of sorts. At a local clothing store that we frequent on mommy–daughter days, one of the employees adores Julia and always asks her to model her clothes when she tries them on. Our son’s baseball team has adopted her as a member of their team.

It’s no different at school. Her classmates high-five her in the hallway, help her with her backpack, and open the door if she needs assistance. They even write her letters to tell her that she is their best friend.

Julia is too young to understand her celebrity status, but I know that all the love and attention she receives gives her the confidence she needs to develop into an even more amazing young lady.

As I look back on these nine years, I wonder why I ever shed a tear about having a child with Down syndrome. It was the path our family was chosen to take, and I know we’re up for it. I could not imagine life any other way. Without a doubt, our family and friends have been profoundly affected by this gift. The people we’ve met, the challenges we’ve faced, and even my career choice have all been influenced by one little girl.

Her name is Julia.

Suzi Klimek lives with her husband and two children in Granger, IN. Originally from Wayzata, MN, she relocated to Granger after graduation from Saint Mary’s College in Notre Dame, IN. Klimek is the executive director of marketing for SureStep.

A version of this article was previously published in the June 2011 issue of Family magazine.

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