This was a coping mechanism to come to terms with becoming responsible for the well being of a human being—from keeping his bottom clean to helping him become a contributing member of society.

It didn’t take long to realize that changing a diaper isn’t a big deal not only because it isn’t but also because EJ’s condition gives us other things to worry about such as making sure he is breathing, that he’s getting his six doses of medicine daily, and that the hole in his stomach is providing him the nutrition that he needs.

Thinking about taking care of all that at home on our own seemed more daunting in the days before our discharge from the hospital than the thought of changing a diaper did before he was born, but as it turns out, taking care of EJ is the easy part, especially compared with making sure to take care of yourself as well.

One milestone I remember from the hospital occurred shortly after we transferred to Transitional Care and learned how to feed him using his Gastrostomy Tube (G-Tube). After months of watching nurses do something for EJ that most parents begin providing for kids in the first days of life, I finally got to provide for my son in this most basic of ways, and it was a true joy.

During one of our many follow-up appointments back at Cincinnati Children’s Hospital Medical Center over the past two weeks someone observed us, EJ, and all his equipment (double stroller, ventilator, suction machine, emergency bag, monitor, and diaper bag) and said, “He must be difficult to take care of.”

I’m blessed to be surrounded by family and friends who inspire me to be the best dad I can be, and the one thing all the parents I look up to have in common is they would still be the same great moms and dads to their kids even if they had a couple extra machines or tubes to lug around.

The difficult part isn’t turning on a machine a few times a day or having to spend a few extra minutes loading stuff in the car. Anything related to EJ is the easy part. The difficult part is taking care of yourself and being in a position to put him first at all times.

Spending an extra five minutes making sure EJ is comfortable and safe before leaving the house is no different than spending extra time to help with homework or read a bedtime story or change a diaper even though you know mom will do it 15 minutes later and you can pretend you didn’t know he had soiled himself.

EJ’s condition is for life, but so is good parenting.