Not Alone in this Journey

My name is Mary Marek and my family has hit the “jackpot” twice in the last three years.  My oldest, Lily, was diagnosed with coarctation of the Aorta and secondary cardiomyopathy at four months of age.  We had less than twelve hours to soak everything in. Our youngest, Maddie, was diagnosed in utero with Truncus Arteriosus. We spent four and a half months worrying about her before she was actually born. With no family history, this was pure luck.  We felt like we were living in a world where no one fully understood what we were going through. Two baby girls, exactly 1.5 years apart, and reliving the worst situation my husband and I have ever gone through. It was as if someone rewound time and replayed it over and over again. Constant life routines seemed bleak at times, until a nurse explained to us what the Children’s Healing Center was all about. 

“We felt like we were living in a world where no one fully understood what we were going through.”

From left to right: Maddie, Brian, Mary, Lily

Our lives changed for the better when we learned about the Children’s Healing Center while in the hospital with our second child. It is right then that we realized we were not alone in this journey.  The Center has been a positive blessing in our lives over the past 2 years.  There are so many benefits of the Center from being germ free, letting my girls participate in normal activities healthy children get to do, and connecting us to families who share similar stories.

We love how our two girls can run around like kids without us having to worry about them getting sick.  Before the Center, I was stuck at home all winter long with our youngest.  Now my children are able to play with other children their own age and make friends. This is something they wouldn’t be able to do as easily if this place wasn’t here. On top of playing with other children, they get to take part in normal childhood activities such as meeting Santa and going to preschool. 

“Our lives changed for the better when we learned about the Children’s Healing Center while in the hospital with our second child.”

Lily (right) and Maddie (left) get their picture taken with Santa at the CHC.

I believe the most loved characteristic of the Center is connecting with other families and sharing our common yet very different medical journeys. These families “just get it” and understand our journey in a different way compared to other healthy families. We have met some wonderful people which caused us to create some lifelong friendships. Our girls have met other kids they can relate to (and eventually talk to) when things are tough during the many doctor appointments, surgeries, etc. 

The CHC is a blessing because I know I will never fully understand all my daughters emotions and feelings they will have along this journey.  I am sitting on the sidelines trying to be the best coach in this world as I watch my children navigate something I have never experienced myself.  I wish everything was happening to me and they could be normal healthy children. 

The Mareks and another member family attend a CHD Awareness event together!

Our life isn’t easy, but whose is?  Everyone has their struggles and I believe what defines you is what you make of them.  Our girls, and all the other children at the Center, are on these crazy medical rollercoaster rides, but still manage to be the strongest and bravest children I have ever met.  They make me realize how lucky I am to know each and every one of them. So, you could say we hit the “jackpot” a third time when we found the Center. Have you too hit a “jackpot?” Share your story with us, we’d love to hear it.

-Mary Marek, Member Mom to Lily & Maddie