By Matt Mays
The first question that most people are reluctant to ask us is, “Did you know?” The answer is no, we didn’t. Throughout the entire pregnancy we had no indication that there were any issues whatsoever. So, like so many others, we were shocked when our son, Leo, was born with Down Syndrome.
Immediately, there were health issues associated with Leo’s condition. He was five weeks early and was having trouble breathing. The hospital staff took him away to the ICU and thus began our new lives. For the last four years our journey as parents of a child with special needs has included countless hospital stays, doctor visits, therapies, sleepless nights, tubes, wires, medical devices and big bills.
“Since the beginning, no matter how scary and tough things were, Leo has been an amazing source of strength and character.”
But while we live with some of these difficulties and the reality that our child might be a little different than others, the most important part we tend to focus on is all of the tremendous upside. Since the beginning, no matter how scary and tough things were, Leo has been an amazing source of strength and character in our lives. He has made it through all that has been thrown his way with a smile and an amazing sense of calm.
Early on, we were fortunate enough to recognize these traits in our son and it helped guide us through every decision we made for him. Believe me, as parents it is easy to get caught up in an extreme circumstance like ours where emotion can take over and cloud judgment. As long as we remembered to make choices that were about Leo and Leo only, we could feel some comfort in those difficult moments.
“The most important part of this journey has been reinvention.”
For my wife, Laura, and I, the most important part of this journey has been reinvention. Reinvention of ourselves, our relationship, our professional lives. We are more patient. We have learned to tell our story. We are quieter, too, as this new level of understanding we gained leads us to be more thoughtful in our interactions with others, no matter their situation in life.
Leo turned four a few weeks ago. He’s starting to walk, talk and is the most amazing person we know. He started school last week and has been described as a “model student.” He is a fantastic older brother and is on his way to do great things. We just know it.
This is the 19th year of the Spirit & Place Festival and the festival will explore JOURNEY. The festival takes place Nov. 7-16, 2014 all around Indianapolis.
Matt Mays is a three-time Emmy award winning television producer and filmmaker from Indianapolis. His passions are raising his family, making music and film. More at MaysEntertainment.com @MattMays1