Friday, August 21, 2009


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Normally our medical visits are categorized as f0llows:

Cardiology visits- the least fun. They almost always include a blood draw and usually take upwards of two+ hours

Pediatrician visits- mostly fine and even vaccinations and extra flu shots are over fast.

GI visits- No biggie except for the height measuring which Simon does not like (due to the need to be lain down on his back)

So when our cardiology visit this past Tuesday went so smoothly (minus the very short freak-out during his Echo) I was thinking that the rest of the week would be cake.

Not so, not so.

It started with me, Laura, waking up Thursday morning with what hinted at a sore throat. Simon seemed fine. So in our special co-dependent way all seemed fine until we hit the pediatricians office.

Simon was chillin', checking out the fish tank and a nurse that I've never seen before hands me a "development survey". First off it's the wrong month (she handed me the 18month old child survey) and second.....where do I start......

Simon spent 4 months in the ICU. He is amazing and incredible and surviving and thriving despite being in heart failure, vomiting several times a day, having a tube sticking out of his tummy, and taking 6 different medications that each come with a long list of possible side effects. Really, he's rockin' it given all that.

And, it hurts my heart when I'm checking off that fucking list and almost every answer out of a possible 'yes' 'Sometimes' or "not Yet' is a 'Not Yet'.
Not yet
Not yet
Not yet

He's behind in every category. I think I had maybe one or two Yes's out of the whole dang thing. I know it makes sense and really he is a miracle child AND I gotta tell you, it sucks to have it come at you all at once that your child, that most precious little ball of life, that you are working so tirelessly at not just keeping alive but teaching to savor and delight in each moment (as you are trying to do as well), that this child is not quite where he's "supposed to be".

I know that given everything that Simon has been through, he is just where he is. It would be extra ordinary and most unlikely for him to be just like all the other kids his age. And I know that every child is unique and different.

Still, we as a culture have created these 'ranges' and when you fall outside of them, there are a whole host of other things that can come into play. Simon is outside the range. It's often a lonely and hard place to be...for both of us. *Cue rolling tumble weed and a melancholy cowboy song*

And I know that almost every second of every day. I don't have to focus on it since there are so many other things to focus on moment to moment. So, when it's all lain in front of me in a matter of minutes, sitting neatly on two pages (double sided), on a clip board in a doctor's office, on a day when I'm starting to feel the tingles of a cold coming on, moments before I have to hold my son while he gets his vaccinations (extra ones for him with the coming flu season), it's not a happy moment.
It's now Sunday and I'm going to finish this.

Simon and I are both starting to feel better. We're no where near over this cold, Simon managing it so much better than I am, but at least we'll start the week on an upswing.

Jaime has been a saint all weekend and Abby is going up for Sainthood as well.

Simon is just perfect, three words and still crawling, he is right where he should be. Here's to a gentle week ahead of us.
Such a punim on this kid right?!!

punim=face in yiddish


Eleanor Chrom said...

Simon is a miracle. We're so happy that we shall be seeing him soon, less than two weeks until the Bat Mitzvah.
Love, Ellie & Sol.

anna said...

Simon is where he is, and it's a sweet, loving, peaceful and hopeful place...where he is, that is. love you all. glad you're less illing.