My second son was born a year and a half ago with hemifacial microsomia. That means half of his face is deformed. I’m not linking to a description of the birth defect, even though I know you will Google it. I’m not linking because the pictures are always the worst cases. He does not look like the pictures.
Still, I knew he was deformed the minute he came out. The nurse handed him to me, and his face looked uneven. I tried to tell myself that maybe it was because babies’ heads are scrunched right after vaginal birth.
His Apgar score was fine, but after a few hours, when my husband left the hospital to go home to sleep, I went nuts. Summoning every available professional — there were very few that late at night — to tell me a diagnosis.
In the morning, they did emergency tests on his hearing, because his ear was deformed, and on his breathing, because the inside of his mouth was deformed. Then someone came to do a kidney test because the kidney and ears develop at the same time during the pregnancy and when one is deformed the other often is, too.
The baby did not pass his hearing test and one kidney did not look right. The doctor told me that the kidney problem is common and he just won’t be able to play contact sports.
I must have looked really bad because social workers started streaming in. I don’t remember what I said, but my brother remembers my first phone call to him: I am crying so hard it takes five minutes for him to hear that the baby is deformed. Then, when I calm myself down enough, I tell my brother that my husband will die when he hears this so I have to hide it from him forever.
This is when my brother says, “I’m coming there.”
I say, “No. I don’t want you to see the baby.”
The world can publish ten thousand books about how parents love any child they get. And it’s true. But it’s also true that there’s a moment, a short moment, when you think you might die from the news.
Right after the phone call to my brother, my husband came back, and I said, “The baby is deformed.”
He said, “Are you kidding? You think I can’t see that? I know.”
We took the baby home two days later. We diagnosed him by looking at pictures on the Internet. We were absolutely stunned to see a whole population of children who had the same weird deformity.
I brought him to New York University’s Institute for Reconstructive Plastic Surgery. Hemifacial microsomia is very complicated because it can affect eyes, ears, nose, throat, heart and nervous system, all at once. Many specialists work together to come up with a plan for surgery. At my son’s doctor’s appointment, I presented him at the front of a room, with a social worker next to me, while fifteen doctors asked questions and examined him.
Here’s what happened: My son’s surgery was performed by one of the best teams in the world for hemifacial microsomia. All the doctors were incredibly compassionate. The support team of social workers, speech pathologists, and administrators always knew what my son and my family needed before we did, and they figured out how to get it. My son has a scar, and his face is a little uneven, but many people don’t even notice at first glance.
I told myself that I should write thank you notes. The team at NYU changed my son’s life, and helped my family at a time when we really, really needed it. That was six months ago. It’s been on my to-do list for six months. It moves up and down. A few times, when I’ve been really industrious, writing thank you notes has been at the very top, the only thing on the list, and I still didn’t do it.
Last week I admitted to myself that my son will probably need more surgery once his jaw grows to full size. And I thought, Oh my gosh, I had better write those thank you notes or we won’t get into NYU for the next round of surgery.
So tonight, I finally wrote them. There were a lot. Each note made me cry. I thought about how much people did for us. How kind they were. How fragile I was. How tiny my son was. Everything. Every sentence made me cry.
And I learned a bit about procrastination. I had been so angry at myself for waiting so long to write these thank you notes. But I do not procrastinate because I am lazy or unorganized. I am not those things. I procrastinated because I could not bring myself to think about the operation again. I was not emotionally capable of writing the notes until tonight. Sometimes procrastination is the best tool we have for taking care of ourselves.