Thursday, June 24, 2010

Thank you sir, may I have another. NOT!

Went out shopping today for PJ's birthday party and at one point, I told the husband I was going to return some hats that were gifted to Lincoln that don't fit. He's so sweet, and he says what he says all the time: No, don't go. Stay here. Or: Come home soon, OK? Almost always, I acquiesce. If it's important to him, why not?

Not today. Today I was all tough guy and all: It's OK, I'll be right back. Just going up to Old Navy. I'll be right back. I promise. I kissed his neck and went off on my side mission: Return hats, join husband.

So, I'm in the store and I remember we need shoes for the girls. And socks. And a bathing suit for me (this we *really, really* need). I'm focused. I hunt AND I gather. And I get on line. That's when it starts, internet-people! MY VERY FIRST PANIC ATTACK.

There were two women in front of me on line and a guy behind me... The woman checking out first had a fucking mountain of shit to pay for. I couldn't fathom it. And the woman right in front of me was rifling through receipts in one hand, and clutching a wrinkled shirt in the other.

I started to shake. My pulse went up and it was all I could do not to start bawling on the spot. I also couldn't move from where I was standing. Bitch was glued to the floor. And I'm such a fucking geek; I recognized right away what was happening and I STILL COULDN'T DO ANYTHING ABOUT IT. The tears were coming, fast... I turned my head to the dude behind me as I placed all of my stuff on the shelf where the keep all those hip dog toys at Old Navy, know where I'm talking about? So, I put my stuff there and say to the poor guy: I'm sorry! I have to go! Like. He. Cared. And I pretty much ran out and started texting my husband to find out exactly where he was.

When I found him, the tears were at the gate... but he was there and he was sweet. And he was there and I didn't cry. This time.

Tuesday, June 22, 2010

The Real Deal

Go HERE if you want the best, most up to date and non-alarmist information on Fragile X.

Monday, June 21, 2010

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).

Sunday, June 20, 2010


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.

Saturday, June 19, 2010


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

Friday, June 18, 2010

Irony Part I

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

Wednesday, June 16, 2010

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...


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.