Being sure.

I think about the conversation nearly every day.

The seemingly scatterbrained geneticist with her big huge textbook on chromosomal trans locations. 20 hours earlier we heard the word lissencephaly for the first time. Only minutes earlier we heard the term Miller Dieker Syndrome for the first time. Karin and I sat nervously on the NICU “family room” couch. A two week old Liam lay in his isolette 30 feet away.

“I have some here if you’re sure you want to see them ” she grasped the textbook and slid her fingers to the page marked by the post it note sticking out.

“See them?” I asked. We were talking about chromosomes. We were talking about my son. About “abnormalities. About life expectancies. I didn’t need to see charts or molecule diagrams at that moment.

“Well, pictures of other kids who have the same diagnosis. So you know what your son may look like due to the syndrome. If you think your OK with seeing them I can show you some pictures of children up to a few years old. ” she said it just like that. Clutching her book and waiting for us to decide, as if what were about to see would have us heading for the hills.

I don’t have any idea how hard it must be to be a geneticist who’s job involves telling brand new parents the kinds of things that are “wrong” with their kids. Things that, though could not have been prevented, bring tremendous guilt since it came from within themselves. How difficult it must be to choose your words. To decide how to frame the conversation without setting expectations too high or low. I don’t envy her position in this.

Karin and I looked at each other for a second both nodding that we were ready for whatever we were about to see. We grabbed each other’s hands and told her we would like to see the pages.

The geneticist opened the book first to herself and then turned it around toward us. We looked on in silence. Looked back at each other and back toward the book and its pages again.

” I’ll leave you two alone for a few minutes to look at the pictures and I’ll be back to answer any questions you may have.” She excused herself without a word from either Karin and I who had now flipped through the four page textbook entry that included about a dozen photos.

“Uh,…” Karin seemed to be choosing her words carefully. “Um, what am I missing?”

I knew exactly what she meant.

“These are the cutest kids I’ve ever seen! Why did she make us decide if we were sure we wanted to see this. What am I supposed to be seeing here?” She said with relief in her voice.

“Well it says here, pronounced forehead, shortened nose, widely set eyes. I don’t know, they look like kids to me.” I said.

I remember laughing. Us both laughing. After twenty hours of mostly tears we had no idea what our future would hold. We had no idea what a life with a Miller Dieker kid would be like. We had no idea if Liam would even make it home from the hospital.

But we still knew what was funny.

And when a scatterbrained geneticist worries you into thinking your child’s head is going to end up growing inside-out but then shows you pictures of a bunch of adorable two year olds, well …that’s funny.

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I think about that conversation nearly every day.

Whenever I see a picture of Liam and marvel at how incredibly adorable he is.

Whenever I look at him and marvel at how handsome he is.

Whenever I’m amazed at how I could have possibly had any part in making something that looks so …

Perfect.

And now I ask you, are you really sure you want to see them?

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8 comments

  1. I have to comment on this. I’m glad you find humor in it I really do. That’s a gift you have in regards to some aspects of life that I don’t. I have it in others don’t get me wrong, but in that I can only find anger right now.. I can only find a dividing line, a separation.

    Because that tale reminds me of how the Norms often view our own, when they ‘view’ OUR OWN. They SEE them as so different, so…ODD. And we see them as, well, as just little kids.

    I am struggling right now with some things, not the least of which is Bennett’s acceptance at public school. Now you’ve seen photos of Bennett…he blends in to a crowd of the Norms visually, for the most part. But that’s where it stops. Everything else about Bennett does not jive with the typical world. I’m about to hit paragraph 4 which will break my blogjack rule so let me just end with this…other people are starting to label him, to pigeon hole him, and I imagine somewhere he is going to end up in someone’s guide as an example of ‘Hey man…this is what your PDD-NOS/Infantile Spasms/Tumor Boy is going to be like…can you handle that…?

    Time for me to start finding the humor in it before my head implodes.

  2. You run into some real idiots in this life. My daughter has Lissencephaly and microcephaly, and is about the most adorable child ever. ALL the kids I know with liss and mds and micro are! Chubby cheeks and long eyelashes are only a few of the “deformities” we have to “endure”. I’m glad that even that early, you were able to laugh at that ridiculousness. Xoxo

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