I never wanted to be the Dad of the handicapped kid. No one really asks for that. Growing up, they were the kids in the separate room, at the end of the hall at school. I think that I was nice to the handicapped kids, but I didn’t understand them. More importantly, I was never really going to have to understand them because I wasn’t one of them. I could not relate to anything much about them. Through Paul, we got to know some great people that we would not have without him and we learned about those “handicapped kids”. That is a gift I am thankful for every day. I have some great friends today that I would not have gotten to know, if not for Mr. Paul. Everybody has a story, and every handicap has a start, and this is the story of Paul’s first day.
Paul was born on December 18, 2001. Kathie and I had gone through the birth of Paige and knew how things worked. We had been trying for some time and we had experienced a miscarriage in the 5 years between, so we were pretty happy just to be in the delivery room again. When Paul was born with SB, no one was more shocked than we were. We had done everything right and handicapped kids happen to people who don’t do the right things.
I remember the moment that the baby emerged and the mood in the room changed. It was clear that something was not normal. There was a ‘strawberry” on Paul’s back. I had seen something like this before and it did not alarm me. Some of our best friends had just had a son with one of these on his forehead, no big deal, and at least this one was out of sight. But all at once, there were literally a dozen people or more in our little delivery room. There was no cutting the cord or holding the baby like there had been with Paige. They just took him away.
And then it was me, Kathie and a nurse in the room and no one else. I looked at Kathie and asked her if I should stay with her or go with the baby. She said simply “go”. So, I chased down the small army of people taking my son away. I learned we were going to the PICU. I was quickly taught to wash in and garb up. The procedures were much different back then from the PICU now. I followed them to the incubator that they placed the baby and told me that it was critical to keep him away from any possibility of infection. I couldn’t touch him or hold him. So, I just stood there next to him, in his little bubble with no idea what I should do.
I heard a bunch of words exchanged between medical professionals that I did not understand. I understand them now, and it was probably good that I did not understand them then. It would have been tough to learn everything at once. I just remember my baby looked big and healthy compared to all the preemies and the set of sextuplets born that day. How bad could it be?
I eventually went back to Kathie. I couldn’t hold the baby and I knew Kathie had to be worried about what was going on. She knew the baby was a healthy weight and size, and had seemed robust. He had a good cry and everything they tell you to watch for. I told her about the PICU and that there was definitely something wrong, but he seemed ok. Someone would be along soon to explain things to us.
We hugged a cried – half in relief that the birth was over, and half worried. But we knew things would turn out fine, they always did for us, and we did everything right. Finally she asked, “What did you name him?” Prior to this, we had narrowed it down to two possibilities, and were going to decide once he was born. Paul Arthur or Elliot James. I said something like, “You know, I think this kid is going to have a tough time, so he needs the tougher name. Elliot sounds good, but let’s go with Paul”. So we did, and boy did he turn out to be tough.
We had no idea. From then on, we had surgeries, clinics, medications, and learned a whole new language of anatomy and pathology. We learned about the medical culture and about an army of people working right around us that we never noticed before. We learned that a lot of people in this world help out for no reason other than they want to be helpful. And we met and fell in love with a large group of beautiful wheelchair-bound, physically-challenged, hospital frequent-flyer, “handicapped” kids and their superhero parents that we would have never met without Paul. We are truly grateful and hope to stay connected to those brilliant people.