06/21/2011 10:51 am ET Updated Dec 06, 2017

Poor Baby, Poor Mama?


So I've spent a huge amount of time in the past year trying to get clarity about how my son processes the world. He's a very intense, sensitive child, but also very outgoing and gregarious, which can be a confusing combo. He's fine/He's not fine/He's fine/He's not fine, all day long. The total upside-down-ness of our lives in the past two years made it much harder to be able to see him clearly. There was a lot of "context" as the doctors and experts call it, what with my racing to Philadelphia to help my parents die, resigning from the only job I'd ever had since he was born (for which he was often photographed, so I think he thought he was famous), and then my lovely boyfriend moving in with us all at pretty much exactly the same time -- all within three weeks. I mean, c'mon, universe! You've got to be kidding! And yeah, my book came out in those three weeks, too. Le Woah.

So "context," I get it. But now that I have the ability to look in the rear-view mirror, I see how that context just was a message muddler, something that slowed down my efforts to help Zack. So many doctors and therapists, all agreeing that Zack was under self-inflicted pressure, not processing information correctly; his teacher just became more and more frustrated with him; his father didn't understand what I was seeing, the struggle that was visible in his eyes, that he would release by saying "I'm an idiot" when he couldn't stop doing whatever motion/sound/action/noise he was making... Three years. It's taken me three years to get in the same room with the answers.

And now I have a diagnosis (that I will not damn him to). I am relieved to have the beginnings of a way to understand him, so I can start to help him understand himself.

We have a future filled with trials (and errors), new schools, new doctors, new helpers, new tutors, new commutes, new friends, new camp, new new new. It's very overwhelming to me; I can't even begin to imagine how it feels to him, he who has such a hard time keeping his beautiful, poetic mind on any task or thought for long, unless it's a book (his secret haven) or a video game (his guilty pleasure).

And I'm feeling sad. And I feel guilty for feeling sad. I never thought I wanted a perfect child, but having to come to terms with the fact that my child will need a lot of special care and love and attention and hard work and defending and protecting is not coming easily to me.

And in one of the random tests we had to have before we start medications today we discovered that he has an imperfect aortal valve, which allows the blood to flow backward. It should have three flaps, and look like a Mercedes Benz logo; his has two, that kind of high five each other in a casual way as they pass each other, instead of closing like a lock for that brief, necessary nanosecond. I saw his heart's imperfection with my own eyes on the sonogram, the same way I saw his face for the very first time before he was even born... his sweet little profile suddenly appearing out of the static on the screen when I was six months pregnant, the same impossibly cute, kewpie-doll nose that still graces his face today.

He can't have a fragile heart! He has so much else he needs to carry, so many extra burdens. And I know I have to be so strong for him, and fight for him. But I have a fragile heart, too. And it's aching, just a bit right now.