Being a father is an experience one can only truly understand by actually being a father. Similar to being a Marine or a deputy sheriff. You can try to explain to someone what the job entails, the emotions and fears which accompany the experience, and the rewards of earning the title. The only way anyone will truly know what it’s like, however, is to lace up their boots, suit up and do the job. Exactly like being the father to a child with a life-threatening illness. I am all four…
In 2002 I learned that my wife Amanda and I would be blessed with a son. We were young and, like all fathers, I was bursting with pride knowing that my first-born would be a boy. I hoped I would be able to raise him to be strong yet compassionate; tough enough to withstand the challenges life would throw his way, courageous enough to fight the battles which needed to be fought, and caring enough to know when to stand up for the people around him. I knew I was in for a challenge, and had moments of self-doubt as all fathers-to-be do. I knew my life would change forever the day he was born, and I sincerely wished I could do half the job my father had done raising me. Then we had the 20-week ultrasound, and my job as a father took on an entirely new meaning.
Hunter would be born with a severe congenital heart defect called hypoplastic left heart syndrome. Essentially he would enter the world with half a functioning heart. I could exhaust the thesaurus trying to convey how I felt and never truly convey the emotions. In simple terms, I was scared. So I did what all scared boys do. I called my dad. The ensuing conversation shaped everything I have tried to do as a father of a child with a serious illness.
“Dad, it’s a SERIOUS medical condition. Left untreated it is 100-percent fatal. I don’t know if I can do this …”
“Son, that’s the definition of life. It’s 100-percent fatal. Nobody makes it out alive.”
With that simple reminder that tomorrow is promised to no man, I realized that I would never be able to change Hunter’s medical condition. It would be a fact of life as certain as the sun rising in the morning. What I could influence was how he dealt with the unknown challenges he would face. My wife and I made a solemn vow that, no matter what, we would treat him like a “normal” child. Not a day of the past 13 years has gone by that I don’t wish I could change his medical condition, remove the physical limitations he was born with so he could achieve anything and everything he wanted without dealing with the added challenge of his heart. Trade my heart for his. But if Hunter had not been born who he is I would have been denied the greatest gift of my life: meeting the toughest man I’ve ever met … my son.
I’d like to say I was the one who guided Hunter through this journey as he deals with his heart condition. But it has been him who has taught me. As he prepares to enter high school next year and I see the young man he has become, see the compassion he has for those around him and see the conviction with which he pursues his dreams, I strive to do the same. I see the scar on his chest from three open-heart surgeries and realize how truly fortunate we as fathers are to be blessed with the lives of our children. I hear his laugh, the sarcasm in his words as this teenage boy challenges the will of his father (as all teenagers do), and think back to his first open-heart surgery at seven days old. I was so scared of losing him to his medical condition it never occurred to me I’d one day be battling with him over doing the dishes every day and to PLEASE PUT YOUR DIRTY SOCKS IN YOUR HAMPER!!
Of all the titles I’ve earned, “Dad” is the one I’m most proud of. As Father’s Day approaches I realize that being the father of a child with a life-threatening illness is the greatest challenge any man can face. You just do what needs to be done and try your best every day to do what’s right for your child. Enjoy the little things and understand that, when you need it the most, you can find the strength and conviction to get through the battle in the will of your child. I don’t let Hunter down because Hunter has never let me down. As long as he’s not out of the fight, I’m not out of the fight. Hunter once asked me, “Dad, what it’s like to be a hero?” I replied, “I don’t know son, you tell me.” Not all heroes wear uniforms, and you don’t need a cape or suit of iron to be a superhero. Earth’s mightiest heroes are, quite honestly, the children who battle illness and the parents who support them.
Happy Father’s Day.