Wednesday, October 24, 2012

Pencil Rubbings

There is something about October that makes me keenly aware of life's brevity and tenuousness. Maybe it is  the shifting season here as the leaves fall and the snow comes. Maybe it is that my children are settled back at school and I start to miss them through the day. Maybe it is that I lost both of my beloved Grandmas in Octobers past. Maybe it is that October was the month of all the tests and meetings where the doctors all told us to expect our Samuel to die. 

Regardless, it seemed that what is in my heart these days had already written itself. So here is a repost from October 24, 2011. 



I caught myself doing it again - trying to memorize my children. I notice myself studying them, trying to imprint the feel and smell and sound of them into my own cells. With Daniel, it is the long, thin line of his back and the shape of his lips that is just like his daddy's. With Zachary, it is his hands, the out and in and then out again line of his beautiful fingers, and the way he rolls his eyes just like me. With Jacob, it is the way his eyes sit wide of his little freckled nose and the feel of his feet pushed into my back when he crawls into our bed at night. And with Sam, it is still all kinds of new baby things, but especially the squishy soft feel of his newly fattened thighs.

I know that some part of this memorization urge is based on a fear that they will disappear. And in some ways, they will, of course. They will grow up and be big, handsome, hairy men and that will be awesome. But they will not be children anymore and I want to still know this place where they are all soft and sweet and where they still let me cuddle up to their warm loveliness.

I dreamt of this on Friday night after bringing Samuel home from his week in the hospital. In the dream, I was tracing my fingers along Samuel's neck, sniffing that place behind his ears where bigger babies hide their newborn scent for a while longer. I remember doing this type of thing a lot in those first scary weeks where we still thought he might die, especially the day of his first surgery when I feared he wouldn't come back. I could have inhaled him that day, tucked him back inside me where he was safe, where it didn't matter that his lungs didn't work, where I could protect him.

We don't get to do that with our babies, keep them that safe. I knew that before Sam but standing by him while he went through so so so much made me know it more. And I knew before Sam that we couldn't keep them pressed to us, but living with the acute and real fear that he could vanish at any moment made me want to try.

Every so often that vulnerability surges again and I want to hold on extra tight. I take extra pictures and work extra hard to store their words and antics into my memory. But the sound and smell and feel of them isn't something I can keep to take out again another day; that sensory, bodily, momentary experience isn't like the accordion file full of school art projects and successful math tests. Trying to write those things into my neural pathways is just a silly mommy thing I do, and I do it a little more when we've had a scare of our own or when one of the other babies in our CDH community earns wings. 

It made me think of the pencil rubbings that my boys did a couple of weeks ago. They collected fallen leaves from our backyard, tucked them under paper and rubbed their pencil crayons over top to get an imprint of the leaf. They learned that you can't press too hard or you get only the colour of the pencil crayon and miss the veins and shapes and details of the leaf. Outside, the trees are getting bare and the air is getting cold and, soon, these pencil rubbings will be all we will have of leaves for a while. That's just how it is. I am reminded to drink in this fleeting moment with appreciation - not desperation. Pressing too hard doesn't make the leaf stay, it just means that the pencil rubbing I am left with will be missing the nuances.


Wednesday, October 17, 2012

Hooray for poop!

It's taken me a little while to update on how the latest ride on the worry train turned out. A few days after our ER visit, things were still the same. Sam would spend an hour and a half crying inconsolably and then would be fine and then would spike a low-grade fever and retch and then would be fine. On and on. It just wasn't ringing like a GI virus to me. 

When Sam's diaphragm reherniated in the past, he had similar GI symptoms and no respiratory symptoms. I didn't think he'd reherniated this time; that would just be super hard for him to do now that he has a lattisimus dorsi flap repair. But I wondered about other ways he could get a blocked or kinked bowel, possibly a malrotation or adhesion arising from his wonky anatomy and three abdominal surgeries.

I called our people at the CDH clinic and, after much talking and assessing and pondering, Sam went for a chest and abdominal xray. The xray showed that his lungs are awesome. Just awesome. It also showed that Sam had impacted stool in various parts of his colon, including pressing up against his diaphragm. Mystery solved. 

My first response was to feel really upset that I had let Sam's chronic, low-level constipation reach a point where he was in distress. My 'Failure-Mommy' monologue is always at the ready. I started reminding myself that we caught it early and it was fixable without surgery or invasive measures. This was what we were meant to attend to and it wasn't so bad. 

My momentary relief was interrupted by this giddy, adolescent self who started whispering jokes about how Sam was just "full of crap." This was entirely inappropriate, I know. I was listening and nodding while the lovely CDH doctors were talking about the treatment plan. Meanwhile, this immature self was imagining the doctors taking a family history where I had to list family members who were also full of crap and where I gave examples of their full of crapness.

At one point, I buried my face in Sam's neck to smooch him but I was really trying to smother an inappropriate giggle. Wow, will the bizarre coping strategies never end?! I am not sure that I have fallen into uncontrollable crap-related humour before. Oh wait. Yea, I probably have. 

So we are on a new plan and most days it is working and he poops and then eats like a lion. Other days are still rough but but my mama's intuition has settled right down, satisfied that this is what we were meant to attend to. 

This has all made me consider how valuable it is to have doctors who really get CDH. Sam has no oxygen and no g-tube so he looks like he's doing just fine and his long-standing impact from CDH is more digestive than respiratory. I think it is easy for non-CDH folks to see a pretty normal kid and miss the big picture. I am truly grateful for our hospital having a special CDH clinic of people who understand Sam - and who are willing to listen to his mama when she says something is not quite right.