Thursday, January 24, 2013

Back Again!

Sorry for the hiatus. Here is what happens... A bunch of stuff starts happening in our lives (good and bad) and I'm thinking "Man, I need to blog and share this!" but I'm so busy with all of the stuff that I can't seem to find time. Then it starts to back up, and I feel like I want to share but I have all this new stuff to tell and still need to get old stuff told and I hate to tell it out of order... Yeah. This is my neurosis. I create a mental backlog of theoretical blog posts and it keeps me from generating any actual blog posts. Is that proof that I'm nutty?

The only way I'm actually going to get any of this out is to ignore my internal conventions and just get going. I feel compelled to share the last thing first, then go from there. Sorry if it offends your OCD, but if it makes you feel any better it bugs me too.

For those who may not know, Geri's visual impairment is due to congenital glaucoma. That thing that makes old people go blind... yeah, it very rarely is present at birth. The normal treatment for glaucoma in infants is immediate surgery to open the trubecular meshwork (eye plumbing) so the vitreous humor (eye juice) can move normally and drain appropriately, keeping the eye pressure (just what it sounds like) in normal range (10-20 mmHg). If pressures are out of control, they damage and eventually kill off the optic nerve, distort the shape of the eye (causing severe near-sightedness), and create scar tissue in the corneas. Untreated, over a period of about 10 years, the eye would eventually atrophy and rot and have to be completely removed.

When Geri came home, her glaucoma had been untreated for three years. No surgery, and she had been placed on only one medication very late in the game. Not a good plan. She immediately had surgery on her right eye, followed a couple months later by her left eye, to open the meshwork and create drainage. The right eye was awesomely successful. Pressures in that eye are typically around 13 - very normal. The eye has actually shrunk back down a bit, and with her new cornea that eye is in tip-top shape.

Unfortunately, the left eye didn't "take" as well. Pressure in that eye is back up, around 26, and something must be done. Dr. B is going to be putting her under next Wednesday (oh God, that's less than a week... my baby is having surgery again in less than a week... sorry, I just freaked out for a sec) and he will be trying to open the meshwork again. If he can't he will be placing an artificial valve. The valve is a mixed bag, because it's a sure thing to drain the fluid, but it has to be replaced every three years.

Congenital glaucoma is a tough diagnosis. Most parents don't realize this, at least at first, and when Dr. B first said that to me, I was not so sure I believed him. But it's true. It's a lifetime of management and care. Regular pressure checks, repeat surgeries, lifelong medication. It's not something that just gets "fixed" or even "treated" or "managed." The best we can hope for, really, is containment. Keep it under a certain level and intervene every time it pops up. For life. And the risk of blindness never truly goes away. At any point, if the pressure can't be contained, she could become completely and permanently blind. I've been dealing with these realities a lot in the last week or so.

We all want to believe, as parents, that we can fix any problem, kiss any boo-boo, prevent any negatives from touching our kiddos. We have all the answers. It can make us rather insufferable, frankly, to our friends and family because we are used to being The Authority 98% of the time. But we don't really have all that control. We just pretend to, because day to day life requires us to and because the ruse feels rather good and safe.

This is why Sandy Hook and Columbine are so devastating for us. It's why illnesses and birth defects and accidents keep us awake at night. Underneath it all, we know that we truly don't control our kids' every waking minute and we can't prevent bad things from getting past our guard and touching them. We're just not in control. Glaucoma gives me a constant reminder.

The good news, for me, is that I know who is in control. I know that He has plans for my children, and that even the things that look terrible to me in the moment they happen, or the moments after, work out a purpose I can't possibly anticipate. I have only to trust and obey. If I can live in an attitude of trust, then I don't have to worry. I don't have to control anything. It's all in good hands.

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