Saturday, January 26, 2013

Freaking Out

Normally, I'm a pretty chill mommy. With Big Brother and Princess Peanut, I'm pretty darned laid back. For some reason, that's not really the case with Geri.

I distinctly remember looking at her yesterday morning, while we were getting ready to go to her marathon of therapy appointments, and thinking "that one tooth looks like it's off somehow." Yeah, that whole thing about how moms can see everything and notice all and have eyes in the backs of our heads and the soles of our feet (which is why we almost never buy new shoes or get our hair done) is sometimes pretty darned true. Later, during the 45 minute break between OT and PT, I was looking at her and thinking again "that darned tooth looks WEIRD." I reached in and touched it and it wiggled. A LOT. Like, parallel to the floor and back up to vertical again.

I have a six year old. He's proudly wiggled teeth for me and I've responded with just the right amount of acting impressed and acting grossed out (neither one faked, btw) to make him beam as if he'd won a Nobel prize. We've discussed not yanking them out, not swallowing them if you can help it but if you do it will be okay, fair wages from Tinkerbell's crazy cousin who collects teeth, and all of the other things that go along with losing baby teeth. Seriously, I've done this a few times and never been freaked out by any of it.

So of course, when Geri's tooth wiggled, I completely freaked out.

I immediately began to fear for my daughter's life. What if she swallowed it? It would tear her insides wide open with it's jagged edges and she would bleed internally. It was almost certainly radioactive, I'm sure it was, and it would hide in some nook or cranny of her esophagus and give her cancer. Cancer of the throat or the lungs or the spleen or something. It had to come out!!! Now!!!

I grabbed a napkin and wiggled it some more. It moved like a reed in a hurricane, but it didn't want to give. Geri was not a fan of this action. I got a new napkin and tried again. This time, there was a tiny pop and it came out. Geri cried and the little hole bled. And then, I became utterly certain that this tooth had not fallen out. Oh no, it couldn't possibly. It had to have been broken! I examined the tooth, certain that it's anatomy was all wrong and there were pieces of it lodged in her face and burrowing their way to her BRAIN, you hear me, her ever-lovin' BRAIN!!!!And the hole in her gums looked wrong. All wrong. For one thing, a new tooth did not immediately sprout from it. I'm pretty sure that is how this whole thing works, right? I couldn't see anything in the hole. No jagged chunks of old tooth, nor a big, shiny new tooth. Something had to be wrong! I stashed the tooth in a napkin in my pocket, for later examination by the dentist whom I was certain would want an emergency appointment for facial reconstruction later that afternoon, and ran to the doors to get some cell phone reception and call my husband.

"Love, I think Geri broke a tooth!" I blurted as soon as he picked up the phone. "What!?" he demanded. "Tell me what happened." I explained the whole sordid tale and when he answered me, his voice was full of relief and incredulity. "Lauren, she just lost a tooth. That's all." Relief, because his daughter was okay. Incredulity because I had called him in the middle of a nervous breakdown over something so mundane.

This is not in my character. Normally, I'm a pretty level-headed mom. (I said mom, not person. Don't attempt to apply that to the rest of my life!) Somehow, with Geri I am suddenly neurotic and freaked out. I'm not sure if it's the fact that she is adopted, and I feel that looming over us, sentencing us to a lifetime of uncertainty. Perhaps it's because of her special needs. All I know is that, with her, I almost always feel as though someone took my well-worn playbook and threw it on a merrily burning fire. I'm at a loss with her about things that are normally no big deal at all.

I really should have seen this whole tooth thing coming. She's 5. Every time she gets anesthesia, they ask me if she has any loose teeth. Other kids her age are losing their teeth. It's that time of life. But in a lot of ways, she doesn't *feel* 5 to me. She's only been home a year, so in that way she feels like a baby. And she is still pretty delayed from her peers, so she feels around 3 from that perspective. She's started school a year older than her brother did, and I think that makes me think she can't be more than 4. That's preschool age, right?

Yet, somehow, I have moments where I couldn't even begin to tell you her age. Oh, I can spout her birthday like nothing. I repeat it enough for doctors and such. I know hers better than mine, now. I can tell you how long she's been home. I can tell you her current developmental level. I can tell you about milestones and where she is on them.

Moreover, I can easily list every drug she takes and the frequency, dosage, and prescribing doctor. I can tell you the phone number of her ophthalmologist and pediatrician and therapy center from heart. I can tell you the dates of every seizure, the exact heart defects, the particular chromosomal abnormality, every diagnosis and therapy and surgery and treatment. I really ought to try to be an extra on a medical drama. "Doctor, this peds patient needs 50 mils of Keppra and Diazopran STAT!"

But, somehow, I keep forgetting that she is 5. And getting older. Daily, go figure.

So where does that leave me? Over in the corner, with a dish towel over my head, breathing into a paper bag because my 5-year-old lost a tooth. And I will be back there again when she gets hair on her legs, or breast buds, or (oh God in heaven I hate to think of this) her first period. OhmyGodshewillgetoneofthosesomedayandIwillnotbereadyatall... okay, I'm back. Sorry.

I'm realizing that I will never be ready for her body to march on and meet all of it's milestones, whether her mind and psyche follow suit or not. And, frankly, that freaks me out.

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.