Keep Going

By Tony Bombacino

Special needs son stroller

I admit it, I wanted to give up today.  Not on life, but on hope – hope for being able to help my son, AJ.  He’s 7 years old now – and he’s never spoken a word, never crawled and never walked.  He hasn’t eaten with his mouth since he was a baby – and he’s had a feeding tube since he was 6 months old.  He clenches his mouth shut when you go to feed him something or try to get him to drink something with his mouth.  His temper tantrums have gotten worse and more frequent – and he’s getting big and strong (think abrupt pinching, kicking, pulling hair, repetitive yelling and humming, etc.).  He rarely sleeps through the night and is more often up 2-3 times per night requiring my wife and I to switch off every other night and to be on “AJ Duty” so the other person can try to get a little sleep.  This also means we often sleep in other rooms so we don’t wake each other up when getting up with AJ.  He doesn’t really like long drives, restaurants or stores – and forget about movies and airplanes and “regular” vacations.  I think I’m pretty strong and all that stuff they tell us we’re supposed to be, but yes, I wanted to give up.

My entire life, people have told me that I’m a very optimistic person, and I (think) I am.  Maybe naïve is the right word, but I tend to see the good in people, situations and life in general.  From a young age, I worked pretty hard to keep a smile on my face and to do all I can to help others smile and laugh too.  I was never much for staying down for long periods of time or having the “poor me” mindset.  I’m sure there are many factors for my views and approach to the “tough” things in life.  My Mom (who was very silly and no matter what she faced was always smiling and joking around) certainly had a great influence on me in this regard, but I’m sure it’s also part defense mechanism.

Special Needs Son on Swing

As we all know, life isn’t always ice cream, rainbows and puppies – life is sometimes hard and unfair.  We all face our own set of challenges at different parts of our lives – for me, it was things like my parents getting divorced when I was 5, growing up very poor and losing my mom when I was 15.  In each case, I seemed to have the internal strength and positivity to keep my head up and the family, friend and mentor networks around me to make sure I didn’t get swallowed up in grief or self-pity.  In high school and college, I faced the typical challenges and doubts; who/what did I want to be when I “grew up”, what should I major in, falling in and out of love and a wide variety of other self-imposed challenges (aka, dumb decisions).  I graduated college with $25,000 in credit card debt and over $50,000 in school loans; less than 2 years into my first job, I was let go along with half the company when we lost our biggest client.  Things stabilized for a good amount of years as I found some career success and met the woman I would marry.  By the end of 2008, I was preparing to be a Dad (a little girl was on her way), but I was also preparing to lose my older brother, Scott (who was also my idol, hero and so many other titles).  His cancer came back and this time, at age 40, it was too much.  By 2011, I was preparing to be a Dad again – this time, a son.  I was so excited I could barely stand it – and I had no idea what was coming.

For 6 months AJ seemed like a “typical”, healthy boy, albeit a little smaller and a slow eater (not in the nature of a Bombacino).  But then, when he was about 6 months old, he had a 45-minute seizure out of the clear blue.  I can still hear Julie’s (my wife, life and business partner) voice telling me what happened.  All these years later, I can still feel her pain when she called me from three states away.  The next few days were full of fear, sadness, doubt, brain MRIs, varying diagnoses and sleepless nights.  Days turned into weeks and we found out AJ was born with a number of brain malformations.  Seizures came and so did the news that he wasn’t swallowing correctly and he would need a feeding tube.  More seizures came in the following months and years – the missed milestones began to stack up – age 3, age 5, age 6 – maybe next year, we would say.  During this time, we were raising our daughter Luca (now 9) and decided to start Real Food Blends — because when you are raising two kids, one with complex special needs, you should start a company with your spouse – right?  Well, yes!

Special needs son therapyDespite all of the challenges I’ve faced in my life (and that you and we all have faced and will face) and despite all of the challenges that AJ continues to face, I knew I had to get back to the good, the positive – I had to find my optimism again.  I decided to step back and get a different view of the same thing/situation; to re-frame things.  I started to look at things through the eyes of AJ.  I started to read more of the posts and stories from the amazing 90,000 + person Real Food Blends Facebook community.  I decided to stop comparing AJ to my friend’s sons.  I stopped asking “why”?  I turned to the things and people I love – my family, close friends, music and my faith.  I decided to look for moments of hope and joy instead of focusing on the disappointment.  This shift has been life-changing.

I’ll leave you with this.  I was born and raised in Chicago – I’ve seen the lake and tall buildings and museums thousands of times – I’ve been to the restaurants and theatre and street fairs over and over — and it’s easy to take it all for granted.  It’s easy to complain about the weather and the traffic and to focus on the negatives.  Every once in a while, it’s important to go to the top of the Sears Tower (it will always be “Sears tower to me) to take in all the beauty from a different view — to appreciate all the little and amazing things we are missing or not paying attention to.  It’s important to re-frame our situations and surroundings in life – and the same is true for our journey as Special Needs Dads.  This year, give yourself a different Father’s Day gift.  Take some time and challenge yourself to think differently and see your child and your life from a different perspective.  It’s worth it.   I wanted to give up, but I didn’t.  Please keep going.  Your family and kid(s) need you, and so do I (and the other SNDs out there).

Happy Father’s Day!


About Tony Bombacino
Tony Bombacino is the Co-Founder of Real Food Blends, makers of 100% real food meals for people with feeding tubes. He is husband to Julie and Dad to Luca and AJ. When he isn’t working or chasing the kids around the house he enjoys cooking, fishing, traveling, golfing and rooting for the Bears, Cubs and Bulls.