On my desk and hanging on my cubicle wall at work, I have several pictures of Namine. They are not ordered in any way, but they chronicle her progression from her time in Jessica’s tummy to about a year old, give or take a couple months. (The most recent pictures that we have, aside from those here on the blog, are at home.) They remind me of what is truly important.

Ever since Namine was born – actually, before she was born, because of all the doctors Jessica had to see while Namine was in utero – our life has been littered with doctor appointments. It has on more than a few occasions taken me out of work so much that even now, a coworker of mine jokes about “Paul’s 10-hour work week.” That’s not the case anymore, fortunately, but there was a time when that wasn’t much of an exaggeration. There was a time when that was being generous, actually.

I suspect that my job has been in jeopardy quite a few times, due to my frequent absences. Companies doesn’t like full-time employees taking what accumulates to nearly half a year off, even if it is unpaid time and not vacation. It is to their credit and my good fortune that the company I work for is not heartless; they recognize the importance of family, and good thing, too.

Spending so much time in the ER, in waiting rooms, hospital rooms, and clinic offices gets across the point like nothing else that this is your life, and it could end at any moment. You need to decide what’s important to you. Namine has been close to death on more than one occasion. (Matter of fact, Jessica knocked on death’s door herself, thanks to a certain doctor’s ignorance and apathy.) I don’t like to visit those memories, but neither do I pretend they never happened. They are a part of me, and they helped to cement the relationship Jessica and I share. Trial by fire, youbetcha. But we are better for it, stronger together than apart, and nothing could tear us apart.

All too often you hear of families drifting apart; husbands and wives spending so much time working that they forget – or worse, no longer care – about their families. Not just each other, but their children, as well. It’s almost a cliche in America, the dad who no longer knows his wife or kids. If I know nothing else, I know this: I will not become that dad. I like my job – I even program in my free time, when I have it – but I love being a parent.

I share a closer bond with Namine than doctors and nurses at Children’s Hospital are used to seeing between a father and daughter, especially when the child was born with as many problems as Namine was born with. It used to irritate me – it still does, a little, sometimes. But I have come to understand that, statistically, having a special needs child presents the father with issues with himself that he is not prepared or equipped, mentally, to deal with. It’s unusual to see a father take such an interest in caring for the child; usually, it’s just the mom, learning to suction and change a trach; deflate, extract, clean and insert a g-tube; rotate and clean jaw distractors; sponge bathe around leg casts.

I’ll never understand why I’m the statistical anomaly – at least according to the doctors’ and nurses’ expectations. I just know the priorities in my life: my wife and daughter. I’d kill for them, and I’d die for them. But until I need to do that, I live for them.

Husband. Daddy. Programmer. Artist. I'm not an expert, I just play one in real life.
  • Iliana

    What you speak of is an unfortunately common phenomenon for the parents of non-disabled as well as disabled children. According to my own father, jaws hit the floor when he asked for three weeks of paternity leave when I was born. No one had ever, in the memories of the people in charge, asked for more than three days. There is a stereotype that mothers take care of their kids and fathers go out and earn the pay check. Seriously, welcome to the 21st century already!