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!