Friday, August 31, 2007


We made the trek over the big, big bridge this morning for a heart clinic visit at Columbia. It's not easy. It's not pleasant. But as time goes by, it becomes more manageable.

This web blog began almost two years ago. It was an offshoot of Jeff's original yahoo website, which he set up while I was still pregnant with Jordan. His intention was that the site would be a way of keeping family and friends informed about the baby. The baby..

Since that time, I've learned that this site has actually been a source of reference to some families who have found themselves in similar circumstances. I never imagined that would happen. I'm always in awe when I get an email from someone who stumbled here and learned that they were not alone.

This is what I have to say to those select individuals, and they know who they are.

It is never easy. But it does become more manageable. And eventually, all of these doctor check ups and visits, become spaced far enough apart that the rest of our life feels relatively normal. When we aren't shlepping over the George Washington Bridge to go to the hospital, life with our son is a joy. Joy in the sense of living with a very opinionated toddler...but joy nonetheless.

Yes, he takes medication every day. A LOT of kids do that. In some ways, he looks a little different than other kids. So what? It's the differences that make us interesting.

Do I sometimes think about what our life would have been like if Jordan had been born "normal?" Yes. Do I sometimes feel angry that it wasn't supposed to turn out like this? Yes.

But almost in the same stream of thought, I picture Jordan for who he is...whatever nonsense he created that morning...whatever mischievousness he was involved in, whatever ridiculously silly thing he did or said...and I feel so damn happy.

Nothing else matters.


I don't care how many doctor visits we will have to endure in the future, how many times we will have to hold him down for blood draws, how many cathode stickers we will rip off his chest, how many medications we will have to experiment many tears we will have to wipe away.

It's all been worth it. He's alive. He's ours. And he is such a joy it almost hurts.

Yes, they are.


ps - thanks jschumacher, for the Columbia photo.
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