Friday, January 11, 2013

Stuff--Part Dos

I'm not downplaying one child over another AT ALL. They're just different. So no mommy-bashing. Sometimes life just works out on a weird, off-kilter sort of merry-go-round spun by a very freaky clown and you get what you get. Welcome to Earth.

I love both of my boys so much I can't stand it. But this one, for some reason unknown to me, is so highly intuitive and compassionate that he loves me so much I almost can't stand it. In a good way.

This is for his "Got Milk" ad. I'm being totally serious. His idea. He saw Leonardo DiCaprio or some other male actor in a Got Milk ad and decided he needed one, too. Not bad for a first take.

Anyway, I'll start with the disclaimer that he isn't perfect. BUT. On the other hand, I can't count the number of times in one day that he kisses me on the forehead or the cheek. Or makes me cards or letters that tell me he loves me, I'm cute, and I'm pretty. It's completely true that if you hear that enough you begin to believe it. After the end of a 2nd disastrous marriage (on both parts), I was one of the most damaged people I know and this kid right here thought (thinks) I'm beautiful, cute, wonderful, and he loves me. He tells me when he likes my hair. He comments when I dress certain ways. Granted, he goes right back to his Lego's or dinosaur creating, but I actually do feel more...beautiful...because of this kid. For me, that was life-changing.

Recently he asked me why I was writing so much. I told him I was writing a book. He asked how long it was and I told him how long it was in pages and by wordcount. By the end of the day, every person he crossed paths with knew about it. He was genuinely impressed and actually the first person to be such an advocate.

It isn't something I'd expect of a child. Or even ask for. He just does it and will continue to do it whether I say anything about it or not. When I get migraines, he kisses my head really gently and tells me he prays for my head. And, believe me, I'm not entirely sure that God himself would argue with Squib. He's one determined little dude.

So, it was with a very unsettled stomach that I left Texas Childrens' Hospital last Friday after his annual Neurofibromatosis Clinic visit. I thought we'd count spots, do a normal exam, and they'd look at the "NF signal" from his MRI and send us packing. But Squib has also been having headaches, a mild change in vision, and weakness in one side. And apparently NF kids also are prone to other brain tumors and that might be what the signals are. So...more MRI's...(plural) and almost a pint worth of blood to be drawn for more genetic testing than is even decipherable (says this biochemist).

It took me until Saturday morning to gnaw all my fingernails down to the quick. Mostly because I wasn't exactly sleeping. I read two trashy novels whilst gnawing and even the prospect of someone's "glistening wet shoulders" didn't do it for me. And now we are on day nine of Squib headaches and I dare not contemplate the means by which "we" shall make it until March 11 (that's six months from the last MRI so we can detect growth speed) without going totally bats.

It's taken me seven years to walk into Texas Childrens' Hospital without breaking into cold sweats. And take this for what it's worth: I really hate to love that place. And I don't know if we're starting on a new journey or if this is just a preemptive looksee. But I'm the mother. It's like telling your kids not to touch. I have to feel everything.

However, that being said....sometimes you have to remind the fear of it's boundaries....

I will not fear. Fear is a mind-killer. Fear is the little death that brings total obliteration. Perfect love casts out all fear. (now is a good time to shut your eyes if "bad words" bother you) So get the fuck out of my house you malevolent bastard.

Scat

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