Thursday, January 10, 2013

Stuff--Part I

The longer I think about it, the more I find that I can't get over this one thing. Ok, two things if you're counting them as people. These two warriors I've been entrusted with. Fearlessly attacking life and everything in it regardless of risk to life and limb or whether or not they possessed said life or limb at the time:

Squib (left) and Beanstalk (right) in the park.
In this particular photo, Beanstalk is laughing about something that, to be honest, I didn't even understand because he said it in his native language--Klingon. Squib looks either seriously mad or annoyed, but really he was trying to refuse to laugh and a split second later he was busting a gut right along with Beanstalk. I'll never know what for. Blue is in the picture. They share him. It's the favorite stuffed animal of choice. Well, now Squib has Sparkles from the Children's Museum so Blue is playing second fiddle with him.

When Beanstalk was born, I was engulfed by fear. Tragically so. He was born dead, essentially and then they sent me home after four days with this child that had a pneumothorax, club feet, questionable other maladies, pending test results, and I can't remember what else. It grabbed me by the ankles and sucked me right into a pit I couldn't get out of by myself. Even hollering for help didn't work. I asked everyone including God. I could feel it. You know? That feeling you get when you're trying to climb out of a pit but the sides are just crumbling under your fingers and you're screaming, "Hey! Guys? Over here?"

I was a gibbering mas of protoplasmic goo on the inside. And I couldn't have looked too awesome on the outside. Believe me. I think I dropped a good thirty pounds in under four months after Beanstalk was born. And I'm a believing person. I have morals and enough belief in God that I really thought I would have something to lean on, and I think I probably did. But oddly enough it was something Frank Herbert wrote that got me on track. If you are appropriately geeky, then you'll know it:

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”

                                                                                                                   -Frank Herbert

Only I changed some parts after a while. At first it worked as is. But I tried the "I will permit it to pass over me and through me" crap and I'm here to tell you that just doesn't work. It's like walking through your house with mud on your boots. It still leaves tracks. So I tweaked it a bit and came up with something workable.

"I will not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. Perfect love casts out all fear, so you can take your happy ass and your fear along with it and get the hell out of dodge. And when you're gone, I won't care. I'll still be here."


It isn't that I don't get nervous or worry or even get that rush of OMG-ness at times. It's just that I have to stare it down for a second and send it on it's way. I have to hold up my end of things, ask myself if there's anything else that can possibly be done and THEN deliver the mantra. I just really can't even stand to be around fear-driven people.

And those two boys? They wouldn't indulge fear if it smacked them in the face. They've been broken and poked and prodded and dismembered and reassembled and just look at them. They are the two happiest creatures ever to walk the face of the earth. Proof?
Blurry, but a huge smile from Squib two days after open heart surgery and only hours off the vent.
Beanstalk after a series of three surgeries to literally amputate his feet, use the parts to make new ones and reattached them.
That stuff right there. That thing they have? I can't say where it came from. They've been like that from day one. The happiest clams in the ocean. Sure they cry when it hurts, but five seconds later it's forgotten. Forever.

One of my concerns/hopes/dreams was that they grow into a relationship so that Beanstalk would have family around him as long as possible. He can do things, but to add perspective, he's ten and learning to count to twenty and do simple math. We tackled counting to ten last year. But I never wanted to force it or tell Squib he had to watch out for Beanstalk.

Then, on the playground one day, I saw Squib draw himself up to his towering height of 40 inches (heart babies can be short) and about that many pounds, and make that face I knew so well. He stood between where Beanstalk was watching people come down the tube slide and laughing his head off and where another boy had stopped to 'comment.' "That face" is a combo of "I believe I can so do this" and "I will start by gnawing your knees off and when you hit the ground I shall move on to your hips." Add a touch of "over your dead body" and you know the look. He was about to granulate someone who made fun of Beanstalk. And my heart both swelled and throbbed with dire panic. Squib does everything he sets out to do. And the face in the pic up there is not far from his determined litle squint.

Do you know what he said later?

"I don't get it, momma. There's nothing wrong with Beanstalk."

EXACTLY. Take that, tetrasomy 18p and neurofibromatosis whatsits!

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