Verbal Progress

Geri's speech therapist has had us working a lot on "what?" questions. What does a dog say? What does a cow give us? What do we do with a toothbrush?

She's getting really good at them. In fact, we had a great conversation tonight. We were cuddling at bed time and i asked her a couple of questions we have practiced.

"Geri, " I said, "What does a bird build?"
"A bird builds a nest," she answered.
"What comes after 3?"
"After 3 comes 4, " she replied. I decided to try a brand new question to see what she would say.
"Geri," I asked, "What comes after 4?"
"5 then 6," she told me.

Wow. Just wow. We've never practiced that question. We had to practice the "what comes after 3?" question several times before she could answer it reliably. But, without coaching, she extrapolated the answer to the first question out, not just one step but two steps forward!

It's been fun watching how her mind works. When we started on the questions about birds, it was a hoot. There was an answer her therapist wanted (a bird builds a nest) but at first we got something pretty cute. The first time I asked her what a bird builds, she immediately said "A house." Well sure, I thought. We build houses, I guess she would assume birds do too. And she's not entirely wrong. A human habitat is a house, a bird habitat is a nest. I just smiled and said "A bird builds a nest." The next time I asked her what a bird builds, she answered "A bird house."  Again, it hurt my heart to correct her. In a way, she was right. And in a way, her answer was far more clever than the stock answer.

How's THAT Work?

When we started the adoption process, we often wondered how this would look from day to day. What is breakfast gonna be like? (Noisy.) Will we still take vacations? (Yes!!) What happens if someone gets sick?

Man, we are experts in illness. Especially lately.

I'm a believer that there is NOTHING worse than both parents getting sick. When the kids are all feeling just fine and both of the adults are dragging, it's a miserable time to be in our home. Lots of movies are watched, that's for sure.

Recently, I went and got sick. Well, I've been sick for a good long while really. For about 3 years now, I've been having recurring fatigue and muscle weakness episodes that are nothing short of debilitating. Then, in June, I started having awful stomach pains that quickly progressed to the point of me being bedridden. In early June I was hospitalized for 6 days. 6. Whole. Days.

So what did that look like? Well, when I was in the hospital, Hubby became something of a single dad. Another family from church stepped up HUGE and took the girls every day (big brother was on visitation with his bio-dad's family) so Papa could go to work. When someone's in the hospital, you suddenly feel like you need money. When Papa came home from work he would grab up the girls and some dinner prepared for us by some of the other ladies from our church, then come to the hospital and eat with me. Well, when they were letting me eat. They kept putting me on "Nothing By Mouth" orders. It was, truly, feast or famine!

The gulag in which I spent 6 days, days I can't get back.

After dinner together, Papa would take the girls home and put them to bed, then put in a bit of overtime to make up hours and we would talk on the phone for a while. Rinse, repeat.

When I was released from the hospital, I had a brief period of feeling better and then it all tanked again. At that point, my fantastic mother-in-law made an 8-hour drive to stay with us for over 2 weeks. Which was good, because about a week into her visit, my gall bladder had to be removed.

The bottom line is, we made it. Lots of wonderful people rallied around us and carried us through. Lots of adoption experts talk about setting up your support network. They are righter than right. At some point, you'll need help. At some point, you'll be able to be a help to someone else. But if there's one thing I can promise you, you'll hit a point where you need more hands than you have. Let people bless you with their help and just tell yourself "Today you, tomorrow me."

It's been one week...

...Since Geri started Kindergarten!! Wow, I am still not able to process that information.

I remember a time, about one year ago, that I would have been pleased as punch to have her starting preschool about now. When she first came home, she struggled with so many things. She was so far behind. She couldn't chew or eat solid foods. She couldn't walk or talk. She was so volatile, emotionally unstable. There was this laundry list of difficulties.

We weren't willing to separate her from us for school or daycare or anything of the sort, a decision I'm glad now that we made. She needed that time with us, that attachment building. (I don't say this as a slam on other adoptive parents who made a different decision or took a different approach, btw. This is what she needed, what worked for us, so I'm just glad we trusted our instincts and did it.) When it came time to broach the issue of separation, it was hard for her at first. But the winding road of resources, support, situation, etc that God led us through made it so that each step built a foundation for the next. It all came out ok because of the way it happened. I can't imagine it having worked any other way. Looking back, though, I can understand why I didn't see this way ahead at the time.

It's amazing to look back at where we have been, where we set our expectations at the time, and where we are now. Kindergarten. She's in kindergarten, at a relatively appropriate chronological age. Her developmental age continues to catch up. The miracle continues to unfold, and we are so blessed to be front and center for it.

BLARGLE BLARG BLURG - I'm sick

K, so I've been super not well lately. I didn't go into it as things were happening, but it's been two months of pain and on Monday I get my gallbladder out. Oddly enough, I've never had a surgery and not been totally stoked. This is the third surgical procedure of my life. First was laser vision correction. I was excited. Second was a boob job (Yeah they're mine, I paid for them) and I was pretty excited about that too. Now I'm getting my gallbladder out and two months of unending abdominal pain have me acting like I'm winning the lottery. Seriously, you'd think I was going on some crazy cool vacay or something but I'm really just going to get part of my digestive system removed.

It's funny how normal certain things can start to look. I'm not sure what it's like in other families, but our family has seen too many trips under the knife to be shaken up anymore. I'm all like "Kids, mom's having surgery on Monday," and they're all like "Yeah, sure, whatever... can I watch a movie?" We've watched a lot of movies lately, because it's about the only activity I can handle.

But they sure did love riding on my lap when I had to use a power scooter at Walmart because walking is too painful.

Anyway, If you are so inclined I would greatly appreciate your prayers. I am never maxed out in that department, more is certainly merrier.

In the meantime, thanks for sharing life with us. It's weird to be the patient instead of the nurse for once, but this is how life goes, even when you add other factors (adoption, disability, blended family, etc) to the mix. Stuff still happens, things fall down, things break, life gets taken apart and put back together again, and you learn to be resilient as a family unit. And somehow, it all becomes more tolerable when you add to the craziness because everyone is able to pour their love into the situation and love is what makes this life survivable.

Gleaning

Wow. I just recently read this article and I'm blown away...

http://newyork.cbslocal.com/2012/03/19/bloomberg-strikes-again-nyc-bans-food-donations-to-the-homeless/

Mayor Bloomberg has outlawed food donations to homeless shelters because their fat, salt, sugar, etc. content can't be monitored.

I'm involved in trying to combat food insufficiency here in Colorado Springs. I don't think I've mentioned it on my blog before, but I run a food pantry at our church and have been doing so for about 8 months now. Every week, we distribute to about 100 people. We're on a shoestring budget, and shopping for our shelves has sure put low-income diets in a different light.

There is no question, no doubt, in my mind that food quality has become a divide in our nation, and there are some serious "haves" and "have nots." A person living on minimum wage in Colorado Springs has about $41 per week to spend on groceries, per working adult. Imagine a single mom with three kids, trying to feed everyone on $41 each week. She can apply for SNAP (food stamps) and that's a pretty decent supplement, to be sure. For a family of 4 the max amount of monthly benefits is about $670. Sounds do-able... but in El Paso county 48% of the people who are food insufficient are not eligible for SNAP.

And that's not even remotely considering the effects of generational poverty or food availability. Many people in urban areas live in what have been called "food deserts", where there is no actual grocery store and the only close sources for food are convenience stores, which sell extremely limited amounts of produce, meats, and other raw materials for healthy diets. The only options are massively overpriced cans of ravioli, soup, tuna, etc. Markups are outrageous, food quality is poor, and unhealthy eating becomes a way of life. Fast forward a generation or two, and you have kids who have never developed a taste for fresh foods because all they know is mac and cheese and ramen.

Trust me, I am all for changing these diets. We're blessed to be receiving a weekly donation of fresh produce from Sprouts Marketplace, and our customers are loving it. I want them to have access to healthy foods, things that will benefit their bodies. I am torn, at times, between needing to stretch our meager budget and wishing for something better for our customers and their families. I truly am. But I know that you can sacrifice a lot on the alter of perfection. I sometimes have to settle for full bellies and empty calories in the battle against hunger. It's a trade-off I accept when I must, trying to buck it every chance I get.

However, this is a different population of the food insufficient. The homeless are a whole separate ball of wax.

People who are homeless are unable to cook for themselves. Making a fire calls unwanted police attention. They have nowhere to store food safely, and must carry everything with them. Canned foods are far too heavy. Soft fruits and vegetables are out in the heat all day, banged around in a backpack and damaged. Things get stolen while you are sleeping, or someone might jump you for your stuff at any time. They rely largely on public feedings for their diet because nothing else works for them. When we started the food pantry, I actually tried to bring the homeless in. We put up fliers in the soup kitchens and the parks. No one came. Finally, I got some feedback through a friend who works with the folks on the street. They were not going to come. Food pantries were "not for us."

So public feedings have a large responsibility, one that doesn't exist for food pantries on the same level. We are not a person's sole source of nutrition.

Public feedings have a duty to provide the best food they can, that's for sure. But their main duty is to provide AS MUCH food as they can. There has to be a balance between the two. Now, if the public feedings in New York City are throwing away food at the end of the day because, gosh and golly, everyone is just too stuffed to eat another bite, then this policy perhaps begins to make some modicum of sense. But if even one person was turned away, or didn't get seconds, or could have walked out with a bagel stuffed in their pocket and had something to munch on the next morning or later that night and they didn't because of this law, then that's shameful.

I Don't Need Money

Okay, I hate to bitch and complain but I have to put this out there...

I've said it before, I'll say it again - if you tell me what a saint I am for taking care of my disabled child, you are implying that she is not worth caring for. By making me out to be some martyr, you make her out to be a massive burden.

Which she is NOT.

We went to the Renaissance Festival this weekend. It was tons of fun, we had a blast, the girls got to see princesses and fairies and a real, live elephant! And me, I got to see a douchebag with delusions of grandeur.

Me and the girls were waiting for someone and playing together when a guy came up to me with his two teen daughters in tow. He knelt in front of me and said "I noticed you with your kids and you are just doing such a great job with them. I wanted to give you this." He held out a $20.

"Thanks, I appreciate it," I said, "but I really don't need your money."

"No, please, take it!" he said. "You are an angel! You take such good care of your kids!"

I took his money to shut him up and thanked him. Then I promptly gave it to two teens who had no spending money.

I'm not an angel. I'm a mom. I do for my child exactly what most other moms gladly do for their kids- whatever they need me to do. My child's needs are a bit different from others, but the job description is the same. Take care of them. Love them. Encourage them.  Adding a long white cane into the mix doesn't make me any more a hero than any mom who sat up all night with a feverish toddler.

But hey, I'm used to this misplaced hero worship crap... adding money into the mix makes it more insulting. Is your $20 supposed to lift me out of the apparent misery of my life? Is it supposed to be the consolation prize for having a defective kid? Do you think I need a consolation prize??

I do not need or want a pity tip for caring for a child that I adore. I love my daughter. That's right, love her. She's blind, she's delayed, she's clumsy, she's hard to manage at times... but she's also funny as all get-out, spunky, bright, friendly. She's a fighter, the bravest damned kid I've ever met, and I adore her. Oh, and she's better at this whole potty training thing than her normal kid sister. So maybe there's something going on upstairs after all, huh?

Please, don't treat someone's child like a burden. And above all else, if you have to make a big deal out of things you don't truly understand from the two minutes of interaction you just saw, please don't insult me by acting like your money is going to make me feel better.

A New Record...

... For longest time a blog has gone without an update. Did I get it?? Can I call the folks at Guinness?

Ok... seriously... here's a run-down on why I haven't been writing.

* I became Geri's CNA. That meant 6 weeks of intense training and then studying and then testing. It was really hectic and insane, but totally worth it because Medicaid pays me to provide CNA contact hours. These are hours she qualifies for based on personal needs, which would otherwise be delivered by a stranger, but instead she gets them from the person who knows her best and understands her. Me! And I get paid for it! So I have more money to spend on... errr... medical bills. Sigh.

* Big Brother is on visitation with his father's family. It's great, they're great, he's having a blast, blah blah blah... I still miss him like crazy and fight off bouts of faux-pression (when you're super sad so you want to call it depression because "sad" sounds too light a term, but you know that you aren't clinically depressed and you don't want to freak out your friends and family by throwing that word around) and being sad makes me blow off writing. But seriously, he's having fun. He had a great T-ball season and is taking swim lessons and had fun at VBS. I just wish he was doing all that here, with me. Yes, it's a tad whiny and selfish. No, I'm not sorry I feel that way.

* Geri's seizures are not quite under control these days. She still isn't having them super-frequently, but her neurologist and I believe we can do better so we upped her Keppra dosage, which was really low. I wanted her at the bottom of therapeutic range to minimize side effects, so it's not like we were just being lazy, but she's tolerating it well so increasing is ok by me. We'll have to keep tweaking it until it works, which some of you know is the fun part of epilepsy. Which means that if this is the fun part, the rest of it blows. Just saying...

* Listening therapy has been FANTASTIC. It's made a huge difference. Her expressive language exploded after we started it, and that's been fun to experience. She's hilarious! She says to me "I'm stinkin' cute!" all the time, as well as "I'm gorgeous." I'm trying to get her saying "I'm so modest" but she'd rather yell "I work out!!!"

* I had a crazy illness recently, was ill at home for two weeks then hospitalized for six days then ill for another week at home, and found out I have some form of gluten intolerance. Apparently I caught a stomach bug that threw my delicate balance out the door and all hades broke loose in my belly. So now I'm on a gluten free diet. May I just say that this has always been my idea of hell? I'm of French descent, raised in an Italian community... My food groups are "bread", "pasta" and "other." It's nice how there's a lot of great GF baked goods out there, yeah I know, but they are most definitely not the same. Even really good GF pasta is a bit rubbery, and great GF bread is a bit dry and not as soft and spongy and... I should stop. At any rate, it sounds like torment until you factor in the physical discomfort of eating glutens, and then it doesn't seem so bad. I seriously feel about a thousand times better... and this may even be the source of my weird "migraines." So yeah, I'll take it and I'll like it. Just gotta pull on my big girl panties and deal with it.

*We own chickens now! Three of them... Hamlet, Rozencrantz and Gildenstern. We had four, but Ophelia died in a heat wave, which I think is consistent with the play. Isn't Ophelia the first of these characters to die? They are pretty good layers and the kids get a kick out of them. Little Sister enjoys checking for eggs and chasing the chickens back into their run after free-range time. Geri loves it when I catch one for her to pet. She giggles her head off the whole time, which is really calming for the bird... not! But it's cute as can be and I love seeing her have such fun. And the kids are great about the "we will eat them some day" aspect, since we have made it an up-front term. If you ask Little Sister what the chickens are for, she says "Food!"

I can't think of anything else right now, so I'll go to bed. I'm sure there's more that I'm missing, but I'll get to it another time. Thanks, and stay frosty everypony!

I Love Therapy (when it works)

Sometimes, we try something in therapy and I feel like "wow, that was a fantastic failure! Never again." Other times I think, "That seems like it might work, let's keep at it." Today, I was somewhere along the lines of "This is a miracle and I want to run out and buy all of the equipment NOW."

Today, we tried Geri on something called Listening Therapy. It's not nearly as simple as it sounds. It's an adjunct to sensory integration (SI) therapies that takes advantage of the fuzzy line between the vestibular and auditory systems. A lot of the modulation that is corrected in SI therapy happens through manipulation of the vestibular system. But the vestibular and auditory fun and games all take place in the same small area - the labarynth of the inner ear. And they operate in basically the same way - fluid in the small canals shifts to stimulate tiny hairs that feed into the nerve bundle from the ear to the brain. Oh, and did I mention they share a single nerve bundle, and nerves in that bundle interact with each other en route to processing in the brain?

See that wall in the middle? Yeah, me neither.

So it makes sense, really, that you could stimulate the inner ear through auditory input and get an SI response.

How it works is using specially modulated music played through super-sensitive, acoustically sealed earphones with an expanded range from the norm. Even those awesome noise-cancelling Bose headphones don't have this range. And it's essential - because the music itself is modulated in frequency, pitch and clarity to include a larger than normal range of frequencies in a specific pattern designed to stimulate the brain in precise ways. The patient listens to the music through the special earphones while completing fine motor or gross motor tasks and the modulated music increases focus, promotes normal interaction, reduces anxiety, and basically helps the child to attend better and connect better.

This morning was the first time we tried this therapy. When we were in the waiting room, she was already throwing a fit. It was not looking good. I was already resigned to a very bad morning of therapy. Of course, she hated the crap out of the headphones. She's not a fan of new things on her body, as the failed experiment with the spandex vest demonstrated. But it was interesting... we put the headphones on her and she immediately cried, then stopped and leaned against me with all her weight and stayed there, still, for a minute. Then she cried again. She cycled between crying and leaning against me, totally relaxed, for about five minutes. Then her OT suggested we sit on the swing, as the vestibular input is normally paired with the auditory input and the swing is an easy starting point for first-time users.

Sweet headphones, dude.

As soon as we sat on the swing she relaxed into a state I've never seen before. She was totally still, completely calm, but awake and alert and listening to the music. She would, occasionally, cry when she remembered she was wearing headphones, but in between she was calm and alert in a way I've never seen before. I was in awe. She asked to see a bin that we nearby, and we took out and examined some of the stuffed animals in it, then tossed them in. She was examining the stuffed animals in a calm and focused way.

She tired of the animals, so her therapist went and got the piggy bank toy and we tried that. At first, she was getting upset because it only had two coins and the one at home has a lot more. We took a break, during which she just relaxed against me and listened to the music. Then she asked for it again and proceeded to put the coins in and take them out again and again, in a very calm and organized way. She was examining the coins with her fingers, not even attempting to put them in her mouth but deeply attentive to their physical characteristics using her fingers. We finally had to stop the fun because we were out of time. She got down from the swing, took off the headphones, jumped on the trampoline with another kid (new therapy boyfriend??) and then we left. She was calm, focused, communicative and verbal. She handled small setbacks easily.

We had a 45 minute break between therapies, so we sat down in the lobby for a snack. I was amazed at how calm, alert, attentive and verbal she was being. She even gave me some very good, very easy eye contact. This is usually tough for her, but she looked right at me and we shared a snack while looking in each others' eyes.

When we returned to her PT and speech appointments, she did very well. She was very verbal in PT, telling Ellen exactly what she wanted to do and didn't want to do. When we settled on an activity (of her choosing) she attended to it for the entire session, not being distracted and cooperating fully. She threw almost no fits.

During speech she was starting to lose the bubble on it, but she was still dong better than normal. She was very verbal, very cooperative, and told us what she needed. She engaged in a small amount of stimming behaviors, very briefly, and was easily redirected. She engaged nicely with me and her therapist.

All through this day, ever since the listening therapy, she's been rocking less than normal. She's made easier eye contact. She's stimmed less. She's been more verbal and thrown fewer fits and recovered more quickly from setbacks.

I'm in awe. Utterly in awe. I'm actually a little scared to share this, because it's only one session and who knows if this will continue to work at all. But this first session had such a pronounced, profound, immediate and prolonged effect that I'm very excited. Next week we will try it again and see how she does, and it she responds well then I'm going to find out how we get her a listening set for home. Ideally, this therapy is done for 20-30 minutes at a time, several times a day. Her therapist may be able to lend us a setup, but I'm thinking of buying one. The headphones alone are $160, but it would be worth every red cent if it continued to work this well.

Anyone else using this therapy? I'd love to hear about it, if you are!

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.

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.