One Family’s Story…The Savicki’s

A Family Story.   The Savicki’s 

We will be sharing stories of the amazing families that make up our beautiful community. This week we are hearing from Christine Savicki.  The Savicki’s took that initial grief and fear and turned it into something beautiful.  

“Be the change that you wish to see in the world.”― Mahatma Gandhi 

Our little boy, Brody Majka Savicki, was born on October 2, 2008.  Having a baby is a defining moment in our lives, one that should be filled with tears of joy, hope and love.  However, happiness, joy, hope and excitement were far from what we were feeling when he was born.  Because of that, we have decided to share our story.    We hope that sharing our experience, will provide families with the support, understanding and encouragement they may need when they need it most. 

 If you, or someone you know, has just been given the news that your new baby has Down syndrome, we hope you will see, and believe, that your life is going to be  a little more challenging, but more rewarding than you can imagine, and as “normal” as YOU make it.  More importantly, our hope is that we help to ease your fears. Our baby, now a little boy at 4 1/2 years old, has done everything that a typical baby does, as will yours.  He’s just done it on his own schedule, which happens to be slightly delayed in some areas, according to the typical milestones charts.  But, the most important thing is that he IS doing everything that we expected our baby to do, before we found out he had Down syndrome.  He does everything we thought, under preconceived notions, he would never do.  He has learned to eat on his own, just like any typical little boy.  His speech is wonderful, and he talks up a storm with a vocabulary I never knew a 4 year old could have!  He learned to walk and jump and run and play!  He laughs, acts like a silly typical little boy, he plays and dances, and yes, he can be naughty, just like any other boy.  He knows how to spell and write his name; he knows how to count; he knows his phone number and address and birthday.  He knows everything that any other boy his age knows, if not more!!  He’s in a typical preschool program with typical children his age, just like any other little boy!  He makes us smile and laugh every day, and reminds us of what is truly important in life!  We treat him as if he doesn’t have Down syndrome in regards to our expectations, and more importantly, we never, ever lower our expectations or expect less of him because he has been given a diagnosis.  We never treat him, or let him know, that he is any different, because he is not!  He amazes and inspires us in every little thing he does, no matter the simplicity or complexity of it.  The love you will experience is like none other, and the things your new baby will teach you will be breath taking, awesome and life changing.   Our story goes a little something like this:

 Our first baby….                                                                                                                                                         

Our bags were packed…..

The anticipation was almost over and the excitement of welcoming and meeting our new baby was rising and rising….

…finally the day was here….

But, on October 2, 2008….our “perfect” day was shattered by 2 simple words….Down syndrome.

The words and emotions that followed were frightening and overwhelming to say the least;

“Open Heart Surgery, AVSD, Single Crease on Palm, Large Space between toes, Early Intervention, Therapy, Medicaid, Developmental Delays, Inclusion”

We were so scared.  We felt, despite what we were being told by family, friends and doctors, that it was NEVER going to be OK.  That these people had NO IDEA WHAT WE WERE GOING THROUGH OR FEELING!  This baby was not who or what we wanted or expected.  I wanted to run away, to wake up from what MUST be a terrible dream.  “Your baby has Down syndrome, and he will need open heart surgery to repair the hole in his heart”.  And we thought, “Who’s going to fix the hole in our hearts?”  I felt disconnected, depressed and broken hearted.  “This happens to other people!  Not to us!”  It was a long first few weeks, but soon our hearts opened up, the tears turned to smiles.  Acceptance set in.  Almost 6 months later, heart surgery on our beautiful little baby took place, and soon we were back home picking up with our lives.  And now, 2 ½ years later, we love our baby more than we ever dreamt possible!  He is thriving, happy and healthy!  We have come to know that “More is Better”! We wouldn’t trade that extra chromosome for all of the money in the world.  He as a one more chromosome than you and I, and we are ALL better because of it!  And…..we are NOT scared anymore.   

In part, much of our shock, sadness and grief were due to our lack of education and lack of awareness regarding Down syndrome.  As a result, we vowed to help educate new parents and families, as well as our entire community and beyond.  We founded The Brody Savicki Foundation, and it is funded primarily by our annual event, Brody’s BUDDY^tm Ride.  We are raising awareness pedal-by-pedal. Our hope is to educate people on the UP side of DOWN, and to help people realize how “normal” people with Down syndrome truly are. The Brody Savicki Foundation’s purpose is to continue to educate and raise community awareness about Down syndrome, to assist families financially in regards to medical needs of individuals with Down syndrome, and to provide activities, scholarships and other events for individuals with Down syndrome. We believe that every individual with Down syndrome should be able to chase and achieve their dreams, and our goal is to be able to assist in any way possible. Down syndrome is a disability: a disability that does not define one, and one that does not stand in one’s way!