by Tony Bombacino

“Life is short”.  We’ve all said it, and those of us who are a little further along on our journey with our 20s and 30s (and beyond) in our rearview are experiencing it even more every day.  Life seems to all of a sudden be stuck in fast-forward.  We might start to ask, “How did I become “middle-aged”?  I’ve somehow almost been married for 15 years, my “little” girl will turn 13 later this year and my little dude, AJ (who many of you know as our Chief Inspiration Officer) just turned 10 this past March.  More than anything, AJ turning 10 really got me thinking and drove me deep into reflection on the past decade.  After unexpectedly being thrust into the world of being a parent to a child with complex special needs, we found ourselves neck deep in survival mode – a mode that unfortunately became our new normal.  As Father’s Day approaches, I thought I would share my reflections as a SND – so far.

Seizures, ER visits, brain MRIs, feeding tubes, misdiagnoses, non-stop vomiting, adaptive equipment, canceled vacations, no friend play dates, sleepless nights and losing hope – Oh My!  That doesn’t have quite the same ring to it as the ole “Lions and tigers and bears, Oh My!”; does it?  Those were all scary things – and looking back, life has thrown me some curveballs, but my path as a Special Needs Dad has been a unique experience itself.  It’s one thing to go through tough moments yourself, but it’s entirely different when you see your child struggling and you feel so helpless; like you’re drowning – when you would give every penny, every ounce of energy and all the love you have just to see them be okay and at peace.  It’s even harder to grasp when your child’s challenges only seem to grow from having seizures ,to needing a feeding tube, to realizing he isn’t learning how to go potty on his own, not talking or walking – and then on to worsening behavioral problems.  It’s a lot to process.

But then, there have been these magical moments over the years when time seems to stop – when all the labels and struggles disappear and you feel completely connected to your child like never before.  He makes eye contact, smiles, plays, is at peace and although he speaks no words it’s as if he’s inside my head and we are one.  I’m grateful that I’ve had so many moments like this with AJ (and so has my wife, Julie) – laughing, tickling, listening to music and doing some of his favorite things (whistling, coughing, letting him go upside down, etc.) where everything is perfect.  I’m not worrying about when he needs his next dose of meds, that he can’t walk, that he doesn’t get invited to birthday parties or that he’ll never play little league. I’m 100% connected to him and him to me. It’s the purest JOY I have felt in life so far.  These are the moments that keep me going and although your moments may be different than those I have with AJ, if you look hard enough, I bet you’ll find some joy as well.

There are so many things that have happened that I’ve learned I was wrong about.  So many tears, so much laughter and so many triumphs along this path that is also filled with heartbreaking defeats and pain.  But, I know this – AJ makes me a better father; a better person.  Without listing out a million different things, here are a few key things I’ve learned in my first 10 years as an SND:

You Don’t Have To “Stay” Stuck In Survival Mode and you can indeed learn how to be happy, fulfilled and “okay” despite all you have to handle and carry with you each day.  On an airplane they tell us to put our oxygen masks on first, but as special needs parents it seems we quickly get (and stay) lost in medicine schedules, doctor appointments, meal prep, therapy options, new treatment options, paying bills, not sleeping and so on – and we just get to a point where we accept that we’ll be tired and sad for the rest of our lives.  My hope for you is that you one day realize that you do NOT have to do this.  We can’t wave a magic wand and make all the bad stuff go away, we can’t find a way to not be tired if you never sleep and it will never be easy to see our children struggle, but you can find a way to thrive even in the middle of the really hard stuff.  Look for a smile on your kid’s face, listen to music that brings you joy, look to your spouse and other loved ones and reflect on an amazing experience you’ve had – and fight like hell to carve out some space and time for your own happiness and peace.  You deserve it and you can do it. 

There’s A Very Thin Line Between Hope and Reality but you can learn to accept your current reality while still hoping for a brighter future without breaking your own heart every time your little person has a setback.  I’m a dreamer, but I’m also a realist.  When people ask me about the outlook for my son’s future, I don’t mince words and usually say it probably looks a lot like his present (he’ll just be bigger ). I’m also quick to add on things like, but you never know what life will bring.  We live in a time with amazing technology and doctors and I am more connected to my faith than ever before.  What I’m saying is, I know that my son may never talk and he may always need a feeding tube, but I will never let that stop me from hoping for the best possible life for him.  I’ll never stop trying to get him the best doctors, nurses, therapists, nannies and equipment possible.  I’ll never stop hoping that he’ll one day say MaMa or DaDa or Luca (his big sister’s name). I’ll never stop thinking about what it would be like to watch him take some steps on his own and I’ll never stop trying to make him smile.  You see, you can be a logical realist and still dream and hope for all of these good things.  The key is finding a way to accept where your child is now while you still dream about the future.  You got this!

You Will Doubt Yourself And Want To Give Up Very Often but please don’t!  As AJ’s Dad, I beat myself up all the time.  I think, why can’t you figure this out, Tony? Why can’t you stop AJ from having seizures? Why can’t you teach him how to eat with his mouth? Why can’t you help him with his constipation or put him at ease when he’s overwhelmed? Why isn’t he sleeping better and why isn’t he learning how to communicate faster and why and why and why?!?  I question if I’m the best person for this “job”. I search my brain, heart and the internet for answers.  I think that I can’t possibly go on for one more day and keep running on this hamster wheel – nothing I’m doing even is making a difference, none of this even matters; right?  WRONG!  You’ve probably felt some of these same emotions and thought some of these same things on your own special needs parenting journey.  It’s completely normal.  You aren’t losing your mind, you aren’t weak and you don’t just need to “suck it up”.  Finding out your child has special needs and adapting your mind and heart to this new world is extremely hard and takes a lifetime to understand and adjust to.  I know you are doing the best you can. Sometimes we have more to give and sometimes less.  Push yourself to be present and give the best of you to all of your kids, but please, stop pushing yourself to and over the edge.  Stop breaking your own heart and telling yourself that you aren’t good enough and that you can’t handle this.  If you’re reading this, I’m quite confident the opposite is true.  Your kid(s), spouse, family, friends and entire circle are lucky to have you.  It’s time you start believing in yourself the same way you believe in your child.  Moving forward, make a commitment to drown the pain with joy and gratitude!

On top of our usual challenges, we’ve all been through a lot this past year or so.  My hope for all of you is that you can find some joy, connection and strength from my personal reflections.  I also hope you make the time to reflect on your own journey and all you have learned and overcome and that you are able to find more peace and grace as you look ahead to the next 10 years.  So long for now and Happy Father’s Day!

by Tony Bombacino

I wasn’t raised to have a poor-me attitude, but let’s face it, life is hard. Life will give you everything you can take, and right when you are ready to give up, here’s a little more just in case you weren’t already stuck deep enough in a rut.  When you’re the Dad (parent) of a child with special needs, I might offer that it can be even harder, or at the very least, a bit more scary, lonely and tricky to navigate. There is more “dark water” to find your way through that is full of unknown bad things that tend to jump out and completely devastate your life in a moment’s notice. There are more emotional wars to fight and off-ramps you must avoid – “easy way out, next stop.” BUT, life is also beautiful, amazing, and precious – and not to be defined only by the bad stuff or the moments when you feel like you can’t get back up.

“The comeback is always stronger than the setback.” – Anonymous

In my previous Special Needs Dad (“SND”) blogs, I’ve written about my “interesting” (okay, challenging) childhood and path to becoming a father, about “re-defining strong” and about how life has prepared me to be AJ’s Dad, but I think it’s important to talk about the reality of this rollercoaster SND journey and what it takes to not just survive, but to thrive in the face of the unavoidable challenges, heartache, fear, sadness, and confusion that will come.

“Those who wish to sing, always find a song.” – Swedish Proverb

My son AJ is now 9 years old. He’s had a feeding tube since he was 6 months old, he’s never spoken a word or taken a step on his own, he isn’t potty-trained and he’s had more than a handful of seizures just in the past few months. He’s not on any sports teams and doesn’t have any play dates. As Father’s Day approaches again, I found myself thinking about the things I can’t do with AJ and being more aware of my friends who have fully capable sons and of complete strangers who have sons of all different ages. I wondered what they have planned – maybe some fishing or a round of golf or maybe one Dad will teach his son how to grill this weekend.  Maybe they’ll watch movies together or just have a game of catch in the backyard.  These are things I long for with my son, but thinking about things that aren’t possible is an emotional trap and something I work hard to avoid – there’s a fine line between hope and reality for us SNDs. Somehow, though, I dig down and always find my way back to who AJ is and don’t stay stuck on who he isn’t or comparing him to other kids. If you’re always focused on the challenge or what you’re missing out on, that’s all you’ll see.

“We don’t develop courage by being happy every day. We develop it by surviving difficult times and challenging adversity.” – Barbara De Angelis

For those of you that don’t know me, I’m 6 6” and around 265 pounds; most people would consider me a “bigger guy.” Yet, people who know me will also likely tell you I’m a softie and very open and comfortable with my emotions, but it’s still hard for me to write and admit this.  I cry, I get sad, I get angry – sometimes I fear the future with AJ. I get upset that I can’t help him more or give him a better life. My wife and I debate and sometimes argue about how to best care for AJ. I also have an 11-year-old daughter (Luca). She’s my little angel, an unbelievable sister to AJ, and blessing to Julie and me. Many times, often after being up during the night with AJ, I find myself struggling to summon the energy and patience to be the Daddy she deserves (and she deserves the best). Some days I question everything – I think back on when AJ had his first seizure out of the blue and how our lives were turned upside down. I wonder, “why me, why us?” I get scared that I focus too much on AJ and not enough on Luca – and moments later I worry I’m spoiling Luca to make up for the extra challenges she has faced as AJ’s sibling.  Some days it’s like being stuck in a continuous emotional, mental, and physical spin cycle.  I know many of you can relate.

“It’s part of life to have obstacles. It’s about overcoming obstacles; that’s the key to happiness.” – Herbie Hancock

Father’s Day for me is a time of reflection. It’s a time to think about what it means to be a Dad and a SND and a time to recognize how lucky I am for all the amazing Dads (and father-figures/mentors) I have in my life (beyond my own Dad, too many to list). Looking back on my first 44 (almost 45) years of life, it would be easy to get focused on the bad stuff and all the challenges and obstacles I’ve faced. I could key in on my parents getting divorced when I was 5, losing my Mom when I was 15 or losing my big bro (and idol) a decade ago when he was only 40. I could focus on various career and relationship missteps (and so could you), but for what?  The older I get the more I’ve learned to embrace my story – all of it. I’ve learned to give less power to the bad stuff and simply accept that it’s going to come, and likely when I least want it to. BUT, I’ve also learned that the key to happiness, enjoying the rollercoaster ride and getting the most out of every day, is as simple as deciding I’m never going to stay down for too long – that I will always bounce back. Oh, and I realized that I don’t have to do it alone. For me, the Three Fs never let me down — Family, Friends and Faith – with a little music and cooking thrown in for good measure.

This Father’s Day, take a break from the tough stuff. See your child with special needs not for what they can’t do or for what they aren’t, but for ALL they are. Be present in the moment without worrying about the future and toast yourself for all you have overcome and for knowing that you will always bounce back. Happy Father’s Day!