Friday, March 26, 2010

Baby love.

(Charlie and mommy, 8 months old. Photo by Cindy Penner)

Why do I always seem to have way to much fun the night before what I THINK is going to be a quick routine appointment for Charlie, but turns out to be an absolutely heart wrenching experience?

Last Monday I did a little belated birthday partying with a couple of my girlfriends...a few bottles of wine and an ouzo shot later, I was sloppily brushing my teeth and getting into bed at 1 am and setting my alarm for Charlie's supposed "routine" 9 am appointment at Children's Hospital with an occupational therapist. I thought Charlie was just going to have her changing physical needs assessed and that I'd be in and out within a half hour. The half hour appointment was two and a half hours long. I always seem to forget/block out how hard it is to watch my obliviously happy baby girl splayed out naked on an examination table, with doctors and nurses struggling to negotiate her floppy limbs on the way down to it, to check her chest and her breathing. It is especially difficult to have med students sitting in on my visits, as it happened this time, watching the doctor maneuver Charlie and discussing her approaching g-tube surgery. I usually avoid eye contact with the students...because if I look, I can see what they are thinking..."poor lady, awww, her baby is going to die, I've studied awful". Or at least that's what I assume they're thinking. It's just that I know they carefully study hurt or dying children all day long, and i can't help but wonder if Charlie is just a stepping stone on their journey through med school... is she just another dying baby to them? I know that it's probably not the case, but i can't help but feel that way. They'll never know Charlie long enough to have their hearts melted and to see what a travesty it really is that she's being punished with this awful disease.

A neurologist, an occupational therapist, two med students, and a respirologist later, Charlie and I were on our way home. Finally. It was a lot to process considering that I'd left my head at Takis' Taverna the night before... all I could think about was water. Lots and lots of water. Lesson learned!

The next day got even heavier, but at least this time Matt was with me and the ouzo haze had cleared. We started the morning on the wrong foot when we showed up for our anesthetic consult at 8 am instead of 11 am, when it was actually scheduled for. How did I write that down wrong? Anyway, it was my fault, but Matt managed to bite his tongue and let me off the hook for it...we just weren't allowed to speak of it until he had a coffee in his hand. When we got back for the actual 11 am appointment, we were left sitting and waiting for the anestitician until 12:30...we were really losing our patience when he walked in and apologized for making us wait and explained that he'd been researching SMA type 1 and the outcomes after surgery. He then explained that in the one major study he had read about with only 6 type 1 cases 2 babies/one third, didn't handle the surgery well. He went on to say that they were healthy before surgery and one of them died 11 days later and the other needed an emergency tracheotomy...something Matt and i had once discussed we'd never do. So, a surgery that Matt and I were feeling somewhat confident about, we were now feeling completely terrified about. Now I'm actually glad it was pushed back 2 weeks...what if it's my last good two weeks left with Charlie. But we can't push it back anymore. It's a double sided sword, Charlie needs to be really healthy to handle the surgery, waiting until she really needs it, means she's weaker and then the anesthetic can be more dangerous. Also, the doctor said that she's using all her energy just to eat right now, once we get the g-tube in, I can top her up with food at night so in the morning she'll have more energy from not having to work for her food as hard, and I'll have more energy because i will get more than an hour at a time of sleep (but that is the least of my concerns). That and it's inevitable that she'll need it, So, it needs to be done now, regardless of the risk involved.

Once my brain had computed all of the information we had unexpectedly cast at us, I became really depressed. I stayed in bed for two days, leaving the bedroom only to eat and make our Hawaii video...soaking up any residual calming and relaxing feeling that I could get from watching it.

Sometimes I wonder/worry if I'm obsessed with Charlie, and I usually come to the conclusion that i am. But I don't think it's unhealthy, I think it's just your average case of a mama bear doing everything she can to protect her cub. Before I was a mother and before I was in this situation with Charlie, I would sometimes dissect other peoples choices regarding what they should do in this situation, I thought that one should have limits-know when to give up and let go. I thought, "if it were me, I'd know when to let go." But I'm one of those people now, and I don't think I'll ever know when to let go, and I don't believe it to be selfish, it's just because she's a part of me...i can't even help it-it's innate, just built into a parent to protect their children at all costs.

I love Charlie so much that after 2 days of moping around the house, I decided to get it together again, for her. I mean she's such a good girl, so easy going, she would have stayed in bed with me for another month, thriving only off breast milk and Sesame Street, but it's not fair to her. Not fair when I know how much she LOVES to go for a, I finally got dressed at 5 pm last night and took her for a should see her face light up when I put a jacket on her now...what once was torture to her, is now the best gift ever. So, I'm gonna finish up here and go get Charlie's jacket and make up for lost time.


  1. beautiful prose and inspirational mothering. enjoy your walks with charlie :) your video is amazing. i can see why it would be therapeutic to make. God bless.

  2. Thinking of you three always and sending lots of love in your direction <3