Friday, February 26, 2010


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Tonight's meds regiment.

A fever and chest infection mean 'round the clock Tylenol and Motrin. Any one wanting to volunteer for the 2:30 and 3:30am doses? We are taking names.

This does not include the waking hour administration of albuterol through a fun breathing apparatus.

Who's life is this?

Mine. All mine.

Very tired.

Thursday, February 25, 2010

Take It All

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I would.

Yesterday Simon was feeling more than just a little punky. He's got another wicked chest cold and a terrible cough that makes him gag that much more than usual. It's a get-purple-in-the-face, make your eyes water kind of gag.

After I was sitting next to him post gag I said, "Simon, I am so sorry that this is happening" and then surprised myself by adding "and I would do it all for you if I could. All of it Simon, I would take all of it and do it all for you. I would take the coughing, I would take the medications, I would take all of the blood draws and Echos, and I would most certainly take the disease. I would take it in an instant and go through it so you didn't have to."

I was such an interesting road to go down. Without question I would do all those things. And in the same instant I had the thought, the kind of fucked up thought that only comes with our very fucked up situation "but all of this is what makes Simon who he is, and I love who he is. He may only be 25 pounds, -30 inches, and 22.5 months of Simon but every single pound, inch, and moment of those 22.5 months is just perfect and loved and held in awe in a way that I couldn't fathom 22.5 months ago."

I'd still take it all. In a heartbeat (there are those goddamn 'heart' phrases again)

We haven't really left the house since Tuesday morning except a sweet little jaunt down Lakeshore with Auntie Dre.

Simon's communication is taking off. We were lying on the bed and playing with the phone. I asked him if he wanted to call some one. Did he want to call MM or PopPop, G'paw or Grandma, Auntie Jen or uncle Frank?

Clear as day he said "Dee" which is his name for Auntie Dre. It was amazing that he had his own process just then and while I was spouting names, he came up with one that was completely his own.

Simon is having his own thoughts. It's one thing to be able to choose from two choices offered to you. It's another to come up with a choice that's completely your own.

I'm sure we're in trouble from now on.

Last night was rough. I think Simon and I got maybe two hours of sleep total. Jaime (bless her, jealous of her), when it's not her night to be 'on' can sleep through the coughing and crying.
In the wee hours his breathing changed and there was clearly some 'pulling' and wheezing going on as he tried to catch his breath.

I know things are worst in the early morning but my mind started racing down that road of "we need to go back to the Dr and maybe even the cardiologist today. I don't want to get admitted. I really don't. What if this is the time we get admitted and his heart is getting worse and we have to go back on IV meds. We've spent 15 blessed months out of the hospital. I don't want to go back. I don't want those days again. Kids from our listserve go in and out of the hospital all the time. It's been so amazing to not have to. I don't want to. I wonder if Carol would be on when we got admitted." Zip zoom vrrrrrooooooooooooooom.
It's amazing how fast that thinking goes. Ferrari's got nothing on me.

He's mellowed some in the last hour. Breathing calming down. He actually seems to be resting peacefully.

Tuesday morning he slept from 8am to 11am and then didn't nap in the afternoon. Rough day but I'll totally take it over the other option laid out above.

I'll take it.

Monday, February 22, 2010

Pace & Perspective

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Simon is on the move. And we're so far behind that it sometimes feels like a million pound ball attached to my heart/ankle.

He's so amazing! He's walking!

Not on his own but he's walking for 1-2 city blocks at a time!! He'll hold on to just one finger or walk at an exciting clip down the sidewalk pushing his walker. For a hundred feet or more!

He won't take more than two to five steps on his own.
He's an interesting little man.

Our Infant Development Specialist from 'school' came by the other day for an in-home assessment and gave me a copy of the report to check out when she was done.
Like always, it's hard to see things quantified on paper. It's so much easier to look at the little man himself. I will say though that it's harder to watch him around his peers but easier than seeing it paper.

To recap:
Easiest to just be in the moment with Simon.
Harder to be in comparison
Hardest to have Simon quantified in a formal report in ink on paper.

There are some great life lesson type metaphors to be made but I'm just a little too tired right now (yes, I went to Bikram Yoga yesterday, got my ass kicked, and will do it again tomorrow).

As it stands Simon falls somewhere in the 10-13 month old range in certain things, 11.5-13 month range in other, and even the 18-21 month range in yet other developmental categories.

He's 22 and half months old.

It's really hard to have perspective around all this and so much of me just wants to trust in the love and support (and toys and games and challenges and language-except for the terribly inappropriate phrases) that I am giving him.
How evolved would I be if I could just let all of the fears and disappointments and need to go go go with the "right" development for Simon?

Super evolved.
I am not.

And yet, I feel most at peace and joy-full when I am not thinking about those things and simply enjoying swimming or going to 'school' or reading before nap time. I love those moments.

We are having good days and that's what matters.


Still... reports and numbers come into the room. They sit quietly but wear bright colors so you can't miss them. Sometimes they place themselves right in the middle of the room so that no matter where you move you bump up against them. It's not a harsh bump, not like scraping up against sandpaper or anything. More like a solid person with slippery cold clothing on. Enough to make you remember a different context/environment.

Simon's room is fun and warm and filled with softness and smiles ('show all your teeth' laughter even).

Reports and Numbers are not part of that. They feel different so you know when they're in the room.

I'm fine while they're here and....really appreciate it when they've left the room (but not the building)

Simon sets the pace. I try to have some perspective.

Then again, I think that sometimes no perspective at all is best and it's just about being in the moment.

F-ing hard.

And great.

But really, F-ing hard. (said with a smile)

The best climbing structures are made out of Grandma material
"Who dressed me?! For reals, who dressed me?!"

A boy walks with his Mommy
(please note the matching jeans and sweater vest style)

He makes a nice looking Bubbie

Not bad in jock-mode either

Muchas smoochas.