pictures

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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Well, well, well and we were off to such a great start too. I haven’t posted lately as things have just popped up. It was a great weekend. My In-Laws came up from NJ to spend some time with the boy. My Mother-In-Law cooked a wonderful meal (for my birthday) that included my parents and sister. Even though I wasn’t the one cooking it was nice to entertain that many people in our new house. I had never had that many people over at once yet. We spent lots of time telling stories and hanging out with the Boy.

Sunday was the 2nd Annual Clam Alley Pottery ClamBake Extravaganza! at my father’s pottery. Last year I was very, very involved in the planning and execution of this event and this year I was, of course, busy with other things. Since it would be way too many people there to bring Liam, Karin and I took turns getting over there for a little while each. It was fun to see family and friends that I haven’t seen for a long time. The event was a success and he sold lots of pottery. Including the “Liam the Lion” pots (pictured below). After the event I was able to bring my Uncle Billy and Auntie Judy over to introduce them to Liam. They drove a long way to get here and it seemed lie the right time to start bringing the extended family over for a visit. They have no kids of their own and so the chance of bringing all sorts of strange germs over were slim. Although my Aunt is very gentle and tender I never thought of my Uncle as the nurturing type. I was pleasantly surprised by how well he took to Liam. They were the only people we have ever introduced to Liam that weren’t phased by all the tubes and machinery. Approaching him the way they would have approached any baby. It was nice.

Monday was quiet and uneventful as holidays usually are and it wasn’t until Tuesday night that anything remarkable happened.

Liam got sick.

I’ll say it again for dramatic effect, Liam got sick.

One last time — LIAM. GOT. SICK.

Now for most babies a cough and the sniffles are no big deal. A pain in the ass? Yes but a fact of life and not something that serious. Liam is a bit different. With Liam’s lung issues a simple cough and excess secretions in his nose can ultimately lead to a lengthy hospital stay. We were a hair’s breadth away from calling 911 to have the ambulance take us back to the hospital but my wife soothed him and got his oxygen saturations back to a somewhat normal level and we were able to stay home. This time of year it is safer to be able to stay home when he’s sick rather then go to the hospital and catch something really bad. You may think that hospitals are clean sterile environments but truth be told hospitals are dirty, dirty places. Its where all the nasty drug-resistant germs live and where all the sick people carrying around nasty bugs go. Knowing that simply walking in the door would mean a stay of at least a week (cultures would need to be drawn and then we would have to wait at least 3 days for them to grow out) going back was the worst thing we could do.

We worked with our doctors over the phone and our nurses here in the house and I am happy to report that Liam is quickly on the mend. We will continue our “sick plan” protocols for at least three more days but his color is back, the cough has disappeared and the think junky stuff we were suctioning from his lungs and airway has returned to its normal consistency. We are very happy and proud of him. Sicknesses are going to come and go for Liam but with each one he beats he gets stronger to fight the next one off so we are glad this one didn’t turn out to be a serious as it could have.

* * * *

I caught Regina Spektor’s performance on SNL and loved it. I’m pretty sure that I listened to her newest album at least once a day the entire time we were in the Children’s hospital. It will always make me think about the worst 3 1/2 months of my life. Track #12 is Liam’s song, all about his hospital stay because remember breathing’s just a rhythm. I hope people were able to see it because she is not as popular as she deserves to be.

I’ve been reading old Vonnegut essays and speeches lately but looking forward to getting back into some fiction. I have Gaiman’s Sandman series being transferred from another branch to my local library and am very much looking forward to those coming in.

It’s late and I’m tired. The boy is asleep for now so I better try to get some sleep. He needs a med and suction in about an hour and a half so a bit of a nap is in order. Till next time here are some more pictures from the past few days.


Some more Clam Alley Pottery


Auntie Judy holding Liam while Uncle Billy looks on.


Some of the “Liam the Lion” bowls.

Great Grampa Andy holds Liam