Saturday, March 7, 2009

We Remember

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For the last couple of months we have been attending the one year birthday parties of the boys from our birth group. At each and every one I become overwhelmed with feeling. Fahklempt, if you will. I am all at once filled with immense gratitude that I am still able to count myself among these families watching our boys meet their first year mark. I am terrified remembering with every cell in my body how close Jaime and I came to saying goodbye to Simon not too long ago (he is still longer in the hospital than he has been out). And I am brought to the realization once again that Simon's heart is not held to this world by much.

If love and community and well wishes could keep some one around, Simon would be like a mafia hit with his feet firmly in cement (I know sick right?). But that's not the case. I love my Grandma like that but she is gone. Simon's heart is not well. It's very sick and from all that we have learned about his condition we could be in for a very long haul of recovery. We could be in for a very long haul of a limited and difficult life. And, we could be in for a drastic change in a matter of moments and Simon could die.

Jaime and I held each other tonight as we remembered all this. We remembered all of this wrapped in the lavash of completely enjoying our son these days and wanting so badly to have it continue. I know it's not very Buddhist of us but we sure do feel attached to the little man.

The longer he is with us the more intense it feels AND I didn't think it could get any more intense than that first moment that I saw Jaime hold him April 9th 2008 at 11:17 pm. Here we are almost a year later and just about every moment with Simon has made me fall deeper in love with him, and Jaime, and our family. Ok, maybe not every moment in of itself (there was that "return policy" blog entry) but they all add up to loving this time with Simon and not wanting it to end.

I don't think there are many parents that have this playing around their heads and hearts so regularly. I know, I know, it's a fucking blessing. Great, I'm still talking about not wanting my son to die.

I don't know what to say anymore.

Here's Jaime:

I just had a good cry. It was the first time in a long time- overdue, I'd say. I felt it welling up since this morning at our first birthday party when I noticed he was a little sweaty. Granted, we were in the hot sun and he'd been pretty active. Total normal physiological response. But the fear that it strikes in both our hearts is intense because that was often one of the first symptoms when he was getting very ill each time in the hospital and the most obvious symptom before he went into the hospital.

Then, this afternoon at our second birthday party, Simon clung to me and snuggled and seemed more content in my lap than on the floor. It almost made my heart break with sweetness. He's starting to reciprocate. I really like him and I can tell that he likes me too. He tried to feed me a cracker today. It was disgusting and I didn't eat it but it was so sweet to have him try.

Then I went for a friend date this evening for a few hours and when I got back I just wanted to hold him close and kiss him and soak him in. Honestly, I think I missed him in those two hours I was gone.

Something is changing again for me. I'm falling in love with him on a new level. And with that comes fear, like it does anytime we fall in love with someone. The root of that all is usually fear of abandonment, right? For most people the fear manifests as, "they're going to fall in love with someone else. They're going to see me for who I really am and decide they don't like me. They're going to cheat on me. They're going to just up and leave some day." For some people the fear might be "they might die" but that's usually pretty unfounded. However, for us, it's right in our faces.

It's so hard to ignore that reality each time I feel myself fall deeper in love with him. I love that he's my son and I'm his Mama. He almost died a few times and it's well within the realm of possibilities that he'll get close again or actually do it. The fear of that pain is intense. It's good to touch it sometimes because it's real and it's there. And I can't stay there for very long.

So...onto some happy stuff. We had 2 great birthday parties today. Laura and I are feeling really connected and enjoying each other a lot. And, Simon is STUPID cute as you can see.

Gettin' Down With Saun-Toy

"I got a button and I'm proud!!"

Lovin' it up with Mama

"Howdy folks. Just getting ready for my Abercrombie and Fitch photo shoot"

Simon knows how to just give it up and surrender. We should all be smart like that.

Thursday, March 5, 2009

Loved baby

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We went to see Dr Su yesterday for a post surgery follow up. Dr Su was the surgeon that performed Simon's G tube placement as well as his Broviak removal when we were in the hospital back in November. She has seen him at his worst (Nov) and then again when he was doing really well (in January when she didn't initially think he was a candidate for surgery- then she saw him in person).

When we came in yesterday you could just tell how excited she was to see him. It was cute.

She said his Gtube placement is doing fabulous and even the red spots that are still there at the stitch sites might be nothing more than a stitch that hasn't dissolved yet and he's just having a slight reaction to it. I completely understand since I can still feel a stitch or two from my surgery. How many parents get to say that about their kids...that they know exactly what might be going on for them in regards to healing surgery sites. That's a little messed up my friends.
As we were getting ready to depart I asked Dr Su if this would be our last surgical follow up since we were also seeing Dr Gleghorn (GI specialist) regularly. Dr Su paused for a minute and then sheepishly replied "well, you could just see Dr Gleghorn and not me but I have to say, selfishly, I want to keep up with Simon and know how he's doing."

He is a loved baby. We gave her a flyer for his birthday party and she is going to do her best to come to his birthday party with her 14 month old baby girl. Too sweet.

Then we went up to Cardiology and the PICU to drop off birthday flyers and once again, folks were just gaga over Simon. He is truly a bright light. I feel like it's pretty important to keep sharing it. He is a beautiful reminder of life in all its fragility, and beauty and strength. He says "enjoy this life, enjoy this moment, it's a gem." It's almost like he's demanding it with each smile, each sparkly eyed gaze. It's so good for me to see, it's clearly good for folks at the hospital who always thank me for bringing him by, and it's good for the person on the street who goes to touch him- gets the "please don't, he's immuno compromised"- and can't believe this baby is so sick.

I don't have words really for how amazing it is. So, I just smile and go on being amazed and in awe of my sick, in heart failure, takes too many medications, eats through a tube in his stomach, incredible, shares his light/life force so easily and powerfully, baby boy.

Check him out.
Comb over anyone?
Even a little puke-age can't ruin this outfit
I love me some Mama!!
Don't you just feel your heart exploding with love