The Real Deal

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At least I wasn't wearing a scrub cap this time... Or eating

I'm sorry, hot husband, you may want to stop reading so I don't embarrass myself...

But the ridonc-u-lous-ly smokin' neonatologist spent quite a bit of time at the nurse's station today. And it wasn't my birthday. Or even my half birthday. And he showed me a picture of his Weimaraner.

FINE. He showed it to everyone (but I saw it first).

Firstborn

I know how lucky I am that I have Ruby loving me. And she LOVES me. A gift of the brilliant and articulate child is that they can trot out their fancy words and imaginings and complicated thoughts and share them with you.

Today she laid some pretty heavy helpings of deliciousness on me and it felt so good to be alone with her in the car, stroking the back of her neck hearing how happy she is that I'm her mama.

After a bit she says: "you know, Penelope is special. Really special. You go and see her in her kindergarten class and she *seems* like a regular five year old... but she isn't. And Lincoln, that Lincoln! He's going to make the best old man & his grandkids (if he has any) are going to just love him."

A few minutes after that, she goes: "I think I'm going to adopt. I mean, you make childbirth sound pretty incredible, I just don't think it's for me".

She's 10 and I so want to be her when I grow up.

Priorities

Another thing I never really understood, because I never really lived it: The grief diet. Hunger is so...unimportant.

Irony Part I

And to think that all this time I was worried about passing along the male-pattern-baldness gene to my kids.

Day 4

Something I'd rather not hear right now? That my son has not changed, that he is the same baby he was before diagnosis. NO FUCKING KIDDING. Thank you for pointing that out. So he still can't walk, talk, wave, use a spoon? Great.

I don't want to hear about your cousin's friend who has a child with Down Syndrome who works for the MTA. I don't want to know that you knew someone who had a kid who had something *really bad* and they have their own apartment now.

The problem with opening up & sharing; asking for words and emotions and reactions is that you often get hit in the face with a frozen pile of shit that stings and smells and makes you want to vomit all at the same time.

The good thing about it is that you sometimes hear things like this: Lincoln doesn't know he has a diagnosis. Lincoln will always believe he is Lincoln. Yes. YES! YES!! This made me believe that someday the grief will subside.

Ton. Of. Bricks. I get it...

lincolnhasfragilexsyndromelincolnhasfragilexsyndromelincolnhasfragilexsyndromelincolnhasfragilexsyndromelincolnhasfragilexsyndromelincolnhasfragilexsyndromelincolnhasfragilexsyndromelincolnhasfragilexsyndromelincolnhasfragilexsyndrome...

This is my brain on diagnosis. Our family has been told that the first few months are the worst. That this is when we will grieve.

I've never been swayed by people who have written things like "I couldn't type the words" or "It was too much for me to bear".
Oh, the taste is bitter now that I truly, deeply know what that feels like.

There are scenarios in my head that are so crushingly sad. I get caught off guard every second of the day by words, phrases, images and sounds that remind me what my baby boy may never get to be. To do. To have.

The things he may be? May have? I don't give a shit right now. Right now he's my baby.