Wednesday, February 29, 2012

Anchors Away!

At some point, I think just after her first surgery, Geri's ophthalmologist mentioned the Anchor Center for Blind Children in Denver. He was thinking we could have her vision tested there in a method that would not require her to speak or otherwise provide feedback for a diagnosis. That way, we could get this girl some glasses and help her see a bit better sometime in the near future. I tucked that little piece of info away in my brain and moved on with the other bazillion medical requirements we were slogging through.

Anchor Center at Night
A bit later I finally researched the Anchor Center online and found out that they are SO MUCH MORE than eye exams. I immediately contacted them to find out what they could do for our little Geri. I was told that she is too old to enter the infant or toddler program, and that their preschool program is only available to children "graduating" from the toddler program, but that they didn't want to leave me high and dry so they would perform a functional vision assessment (FVA) on her and give me recommendations for things we can do to help her at home. I was elated that they wanted to help in what way they could, and jumped at the chance for the FVA because it would help me get Geri's IEP process started so we could get services from the school district. 
The "light walk" and "trail rail" help kids navigate

Monday was the big FVA day, and it went about a bazillion times better than I'd hoped or dreamed. Geri was in a horrible mood, but the teacher of the visually impaired (TVI), Cathy, was very patient and persistent. She gave me all sorts of good information about visually impaired kiddos, and the reassurance was great. 

Lately, we've been getting a lot of diagnoses and medically stuff thrown our way. It was hitting me hard, and I wasn't sure why. After talking with Cathy I realized what was happening - all those test results were robbing me of my hope. It seemed that every day brought a new problem, a new hurdle, a new syndrome. When we had met Geri, I remember looking at Nick and saying "She's still in there. I know it. I can feel it. Her mind is intact." But getting all this bad news heaped on bad news was making me doubt. Was she really in there? Was she capable of learning? Of growing? Would she ever be able to have any level of independence or quality of life? Would the rest of us ever have any quality of life, or would we be caring for the same child until our dying day, bequeathing her to some other caregiver when we passed? Only a few nights ago, Nick and I wept together as he said to me "It's not going to get better. We were too late." 

Cathy said to me what no doctor would. Everyone else was so cautious, but she looked at me and said "Lauren, I don't think she's mentally disabled. Maybe a tiny bit, but not significantly. I see visually impaired kids all day. I also see kids who are visually and mentally impaired. What I'm seeing here is a visual impairment, not a mental one." I told her that our greatest hope is for her to someday reach even a partial level of independence, maybe to have a little apartment and a simple job and some assistance with her day-to-day, but it was starting to feel as if that wasn't going to happen. Cathy said, "I think that's the least you can expect for her."

She explained that rocking is extremely common in visually impaired kids. Yeah, it's very common among institutionalized kiddos as well, but if her rocking doesn't go away it doesn't mean she's still coping. It might mean she's looking for sensory input that her eyes don't give. Visually impaired kids tend to use their parents as "puppets" in the way Geri does. They tend to mouth everything, often this behavior persists into adulthood (although it later becomes a private thing). It's a means of compensating for lost sensory input. Eating and swallowing problems are very common among the visually impaired, too. 

After the evaluation was almost entirely finished she said, "I know Geri is a bit old, technically, for the program but would you like to have her join our toddler group? We have room, and I think that Geri's development makes it a good fit. It's a parent-participation group, so you would be with her. We have sibling care, too, for Mera." I told her that I had been informed that Geri was too old for the program and she said "We're not bound by law. We can make exceptions." 

The gross motor room... sans play equipment. 
On the way out of the building their physical therapist stopped me and said "Hey, we're about to have a gross motor session but only one child is here. Would Geri be up to joining us?" She got a full half hour of PT, one-on-one with their PT assistant. On the way out, Cathy gave me an intake packet and told me that Geri could start the toddler group on Wednesday. 

I cried the whole way home. I wept with relief and joy. Finally, for the first time in months, I felt real hope. Someone believed my daughter has potential! Someone was trying to help! After three months of not being able to start therapies because of wait lists and insurance crap and missed scripts, she'd had her first PT session within just a couple of hours of walking in the doors of the Anchor Center. In that half hour, she pushed a toy shopping cart for the first time and learned to ride a spring horse all by herself. She walked back and forth between me and Meg, the PT assistant. 

Outside play area... not pictured is the "sensory garden"
Today, we attended our first session of toddler time and it was great. Everyone was so nice. She got to go back to the gross motor room, and we got a repeat of the spring horse and the shopping cart. Their lead occupational therapist talked with me for about 15 minutes and gave me recommendations for home. She gave me the name of a private therapy group in the Springs who might be able to help us. We sang songs in circle and she LOVED it. She participated happily, clapping her hands and laughing. She had a great time with sensory toys at the literacy room, explored Braile writing, and had an absolute blast playing at the big light table in the light room. She also picked up an admirer. A little boy with Albinism was following her around the whole time, and his mom said he seemed quite taken with her! First day of school and she already has a boyfriend. 

It was great, for me, to be able to be in a group of parents with kids like mine. It gets really old having people stare at you in play areas (a tall 4-yr-old with bulging eyes who can't walk or talk draws attention, I have found). I could rant for days about how people feel the need to give me these condescending compliments about how "good I am with her." When the little kids stare, I don't mind. When they ask questions, I am very direct and honest with them because it helps them to be accepting if they have some chance to see kids that are different. But when the grownups ogle us and politely look away I get frustrated. Today, every kid was "different" and when the parents looked at me it was because they were reading my name tag. They wanted to welcome us, they were friendly, and they weren't casing my weird child as if she were some scientific oddity. We fit in, and it felt kinda nice. 

I am so excited for what the Anchor Center can do to help us. Already, they've given us hope. I'm looking at Geri and seeing potential again. I'm seeing a girl who WILL walk and talk and go to school and have friends and play. I can't even begin to relate how good that feels. It's worth the drive, that's for sure!

Wednesday, February 22, 2012

Thank God you are God and I'm not...

The two nights before last were really really tough for Nick and I. I'm sure everyone has caught on now to my semi-fragile mental state. I was at my wit's end, and I think Nick was getting there two. Then, two sleepless nights with our little Geri put us both on the brink. 

I was mad as hell at God. When she refused to fall asleep I was angry with Him, wondering why He wouldn't just fix this. As usual, I asked "Why does this have to be so hard?? Why can't doing Your work at least be a little bit smoother??" By night two of the sleeplessness, I was at the point of raging against Him. Not just questioning His ways, but heaping my judgement on Him. "Why did you do this to us??" I wailed. "Is this what we get for following You? Is this how You treat Your servants? I hand You my family and You #*%& is all up??" 

Oh, I was up on my horse and that little filly was very high, indeed. I thought I knew it all, knew what was best. As per usual, I was wrong. 

It occurred to me, as all this was unfolding (or unraveling, as it felt at the time) that the real reason that I was feeling so overdone, so drained, so angry, so frustrated, so irritated, etc. etc. was because I didn't actually love my daughter. 

There, I said it. For the longest time I swore up and down that I wouldn't feel differently about Geri. She was going to be every bit as "mine" as the others. When she had her seizure I was convinced that I felt no differently for her than the bio kids, and at that moment it was true. Truth be told, though, I do feel differently towards her. My love for her has been less patient than for the other kids. I've been less willing to overlook the stress, less comfortable in my role as her mom, less convinced of the bond. Perhaps it's because she's so much more demanding, but in my heart I know that I would have more patience for TJ and Mera if they stressed me out like Geri does. I feel less pressure with them, because the fact that I'm not trying to overcome years of neglect gives me a sense of some leeway. They're happy and well adjusted. If I put them down from time to time, they ought to survive it. I can hire a sitter. My friends can hold them. With Geri, it feels as if there's no wiggle room, no margin. If I don't respond to everything, pronto, and keep her only in my arms then she will explode. Or grow up to be on Jerry Springer. 

The bio kids feel like a comfy sweater of maternal love and affection. Geri feels, often, like a pressure-cooker of responsibility and catch-up. It's hard to love in that environment. It's easy to get overwhelmed. 

Yet the other night, while I was telling God how to do His job, a voice seemed to whisper "Where were you when I laid the foundation for the Earth?" Ouch. I felt immediately humbled. Oh yeah, that's right... You are God and You sort of created everything and it was Your plan that brought me every good thing I've had in my life so far. That God. The one who saved me from sin. The one who brought me out of my own hell and gave me this beautiful life that, even when upended as it is now, is still pretty awesome in the grand scheme of it all. The one who protected me during my years of stupidity, so that I never drove drunk into a post or turned up HIV positive or got myself good and murdered by some weirdo. Yeah, that God. My bad. 

The more I thought about it, I was reminded of something our pastor said on Sunday. He said, in essence, "If you are doing something out of obligation, you will always do the bare minimum and probably with a bad attitude. If you do it out of love, you'll gladly go above and beyond." it hit me like a ton of bricks - what needed to change was not my daughter, but my love for my daughter. 

I was infatuated with Geri. I fell in love with her, sight unseen, and built a pretty picture of her in my head. When she turned out to be different from that picture, I decided that she needed to change to keep my love. True love is built on the reality of the other person, though, and it is only increased by learning more about them. There is no desire to change someone if you truly love them, because then they would no longer be the person you love. 

I had misled myself, and when the mirage began to fray around the edges I figured God was to blame. 

By is grace, He has put a new prayer on my heart and lips and it has changed a lot for me. I prayed to God to make me truly love my daughter. I prayed for Him to make her as if she had come from my flesh, to make me feel as if she had grown inside me. I prayed to Him to finalize the adoption. 

See, we have a legal adoption. Much like you can go to a judge and get a legal marriage. But only in God's sacrament of marriage do two become one. It's a holy miracle that a legal contract cannot replicate.  It's a sacred mystery, the spiritual union of God's sacrament of marriage. (I say that, btw, having had two legal marriages and one sacrament. It's different.) In the same way, I believe that God can conduct a spiritual adoption, one that goes above and beyond the legal adoption by making her flesh of my flesh and bone of my bone, rather than just a legal charge. I took responsibility for her in the judicial system, signed all the papers and such, but I never vowed to God to care for her and love her as my own flesh and blood. I finally did that the other night, and I'm finding I look at her a little differently. 

Maybe it's the Catholic upbringing in me (we love ceremonies, and if you can burn a pound and a half of incense in the process then we are ecstatic), but I'm tossing around the idea of asking our pastor to do up a small ceremony along this vein, more than a dedication and along the lines of almost a wedding. Something in which we make vows before God to raise and love this child. I'm not certain, because it feels a tad corny, but it feels appropriate in a way. 

At any rate, I'm glad He's God and I'm not. I'm too damned fickle and weak. A god who is just like me would cut and run at the first sign of trouble, apply the rules inconsistently, hold grudges and carry tallies, make mistakes all the time, and generally booger the whole works up. I'd be worse off with that sort of deity. 

Sunday, February 19, 2012


I'm fighting a bad bug right now, and it's making me feel utterly crummy. It's called "depression."

Ever since the big bad epilepsy news, and all the harrowing decisions around it, I feel as though I've hit a threshold of my patience. I have very little left, it seems. Every time Geri starts crying (which is about a billion times a day) I feel like I just want to run away and hide somewhere. I sometimes feel that way about Mera and TJ, too. I just want to check out, be vacant, hide out, pull the covers over my head and not have to take care of anyone.

This adoption is, without a doubt, the hardest and most humbling thing I've ever done in my life. See, I've been very proud of my parenting. I have thought, probably all my life, that I would someday be a Great Mom, and then when I became a mom I became convinced of my greatness all the more. Every time someone told me how cute the kids were, I felt like the Great Mom. Every time someone told me how smart TJ is, how cute Mera is, how polite TJ was, how sweet Mera seemed, I felt like this was not a compliment for them, but for me. They were cute and sweet and polite and smart because I was making them that way. Because I'm a Great Mom. Because I'm a goddess among women, able to raise perfect children who ace every test and help little old ladies cross streets and still put an amazing dinner on the clean table when my husband comes home from winning our bread. I'm a Great Mom, look at my happy family and my clean home with pretty throw pillows that I sewed the covers for myself. (That sewing part is true, btw. I miss having hobbies...)

Suddenly, I have a very different kid and the other kids are changing and I am the Great Mom no more. The house is a sty. The meals are less elaborate (and we eat out more). TJ is having issues at school, issues that I can't just fix for him because I'm too tall to blend in with his classmates. "What, I'm not his Mom! I'm a 5 year old girl!" *Pees her pants.* "See?!" Mera is throwing tantrums that you wouldn't believe, and she loves to do this in public. Because it's not fun unless Mom is embarrassed, right? And Geri is disabled. Permanently. No matter what I do about it. She will always be visually impaired. She may never have the cognitive powers of her peers. She might not move out, get married, make babies and play concert piano. I can't fix her. No matter how hard I try. I can't "fix" any of my kids, really. All I can do is my best, and lately my best is feeling like a bandaid on a broken leg.

All of this leaves me feeling totally isolated. I'm convinced that no one knows what it's like to walk in my shoes. No one knows how hard this is, and if I told them, they would think I was mean for not loving my kids more. Because if I loved my kids more, then they wouldn't ever feel like a burden. When Mera throws her fits I should smile and say "She's at that age!" When TJ has a bad day at school I should give him an amazing pep talk and some tutoring at home to turn him around. When Geri throws a tantrum or refuses to eat or sleep I should be saying "The poor dear, think of all she's been through!" instead of growling through my teeth, "Oh, come ON!" I should never lose my patience, snap at someone, let a child sit on the floor and cry, or otherwise be ... well, human.

I am human. Painfully human. I'm aware that, in my humanity, I can't fix everything about my kids. I can't make them, their life, or their home perfect. I want to, but I can't.

Can I share the worst part of it? I feel like a liar. When I take the kids out and people tell me how far Geri is coming and how great the kids are doing, I feel like they would never say that if they had seen us getting ready to leave the house. When I blog about stuff here and people tell me I'm such a Great Mom, I feel like I must have written that all skewed. Did I lie about something, or leave something out? I must have. When everyone tells me what a great thing we're doing for Geri, I feel so fake because this great thing is so hard and I mess it up all the time... not very great. Plus my temptation to feel prideful about this great thing we're doing is always lurking in the background, and I doubt anyone would compliment me if they knew what a hero/martyr I'm making myself out to be.

I'm not a Great Mom. I don't have all the answers. I'm stumbling through about 90% of this stuff, and until the kids are much older we won't know if I'm raising them right or screwing things up. Oh, and did I mention I have a husband, too? Yeah, it's not all on my head only. I'm not the only one working here. Go figure. I forget that most of the time, myself.

I'm not trying to be ungrateful to everyone who just wants to encourage me. I really appreciate all the voices trying to lift me up. But I want to be lifted up by people who know how screwy I am and still think I'm doing my best. I don't want applause from a faceless audience who doesn't see what happens behind the elaborate set design. I want people who know me, and love me, to see my struggles and tell me "you're doing fine, keep going, we're rooting for you and we're here if you need us."

I have a feeling I'm not the only mom who feels this way. And it's not just adoptive moms I'm talking about, either. How amazing would it be if we could all stand together, cry together, ache together, and just be completely real with each other? What if our playdates and mom groups weren't about impressing each other, but about understanding each other? What if we stopped competing and started helping? What if we stopped judging and started really truly caring? What if we stopped hiding and started being right there in each others' messes?

Well, I'm a mess. A real, hot mess. I'm not a Great Mom. I'm a mom who does the best she can with what she has, and who often feels like she's not getting very far with it. But I bet you're a bit of a mess, too, when you think about it. How about we start loving each other's messiness?

Saturday, February 18, 2012

Decision, Decision

Thursday I got a call form the neurologist's office. Geri's EEG results are back, and they show "mild epileptiform activity" during sleep. Translation - she has some mild form of epilepsy. That was, in fact, a seizure. She will, in all likelihood, have another in the future.
Of course, this put us into a discussion of treatment. Although the MRI has not been taken yet, the docs thought the results of this test warranted treatment at this time. The nurse informed me that they want to put her on a drug called Keppra. "It's what we're using for most kids now, "she informed me. "It's very well tolerated, and it's most common side effects are aggression, irritability, and anxiety."
This is the part where my heart just about stopped in my chest.
Aggression? You mean the only damned problem we DON'T have?? Irritability? The defining characteristic of our daughter at this time? Anxiety??? Her constant view of the world around her right now? You want to make these things WORSE???
"I'm not going to survive this," I remember thinking.
She started telling me that the risk of any of these side effects occurring is really quite low. "Although it is higher in children under 5," she says. "And in kids who already have behavioral problems."
Oh for crying out loud.
I pointed our that this basically describes my daughter and she sort of ignored what I said. She told me that we can give 50mg of vitamin B12 daily to counteract the effects of the drug. She was sure it would all be fine, and if not then we can just take her off it! Simple! Prescription is going out today, titration schedule is in the mail. Have fun!
I should have asked more questions right then, but I was too overwhelmed to even begin. For some reason, this upset me a bunch. Maybe it's because we seem to get a new diagnosis for our daughter every other week, and it gets overwhelming because I manage it all. Maybe it's because she also informed me that geri has "diffuse slowing" of her brain waves that could indicate permanent delays and retardation. Maybe I just need more sleep. I hung up the phone and cried the whole time I was trying to put Geri down for her nap.
Nick and I talked about the diagnosis and the planned drug, and he shared my apprehension. I was google searching like a madman, and finding no real information about the prevalence of what some forums called "Keppra rage." I was researching the B12, researching seizures... and feeling overwhelmed and confused. I put a call into Geri's pediatrician for advice and help. Could I have called the neurologist? Sure, but the problem, as I saw it, was that she doesn't know my daughter. She pooh-poohed my concerns that Geri carries all the risk factors for the side effects because she only ever met my daughter for less than an hour in her office. Dr. Kim knows my daughter better, and I wanted his insight.
While I was waiting to talk to him, I did as much research as I could. I found some interesting stuff about the use of vitamins B6 and B12 for treating anxiety. I saw some interesting info about magnesium deficiency being a possible underlying cause of seizures. There was a bit about B12 and magnesium for autism. Some friends recommended a ketogenic diet. My head was swimming. I felt almost certain that we would not be using the Keppra. I was way too scared, and not sure that her seizures were bad enough to use it.
In the end, when I talked to Dr. Kim, he answered my questions far better than the neurologist's nurse had. He reassured me that Keppra is very safe, and that he has patients with autism and Down's syndrome and other conditions that take it and are perfectly fine. He let me know that any side effects would leave with the drug, no permanent damage. He agreed that Geri's condition is mild, so mild that it's reasonable to question the validity of using any medication at this point. We could just wait and see.
But at the same time, he wanted me to be very clear that seizures are damaging to the brain. Untreated epilepsy often gets worse over time, and can turn into status epilepticus - a constant seizure that can be deadly. There's also the possibility of SUDEP, or SUdden Death in EPilepsy. It's very rare, but it happens primarily in the case of untreated epileptics. There is a risk of injury during the seizures, and no telling how severe the next one would be. He pointed out that, although her EEG was mildly abnormal, she will definitely have another seizure in the future. It's not a question of "if" so much as "when" and "how bad." He also mentioned that there could be additional low-level abnormal impulses going on for her more frequently. They may present as staring spells or tics, perhaps so brief and benign as to be totally unnoticed. This low-level behavior could cause damage over time, and could interfere with mood and cognition.
It was a good talk, even if the phone did die towards the end of it!
He stated that he agrees that it's a tough call, that it's good we're trying to make it knowledgeably, and that it wouldn't be unreasonable to wait a while before starting the meds.
We decided to start them, but we want to slow-roll her titration schedule so we have more time to watch for side effects as we increase the dose. Instead of increasing weekly, we'd rather go every two weeks. I still need to notify the neurologist. We also started the accompanying B12 dose.
This was a really hard decision for us, one I've been agonizing over for the past few days and am still a bit worried over now. I don't think there's any way I could make this decision and feel totally happy with my choice. If we medicate, she could have those side effects. If we don't, she could worsen and maybe even have a fatal episode. I'd rather she be cranky than dead, those being the worst-case scenario for each decision. It's more likely she gets cranky, but we can just take her off the Keppra and try something else if that is the case. There's no exit strategy for dead.
So there you have it, the thought process of a mom trying to decide the best medical care for her kid. My biggest lesson learned? Don't believe everything you read on the internet, and don't feel rushed in your decision making (unless there's a good reason.) It's okay that we took a few days to make up our minds. Also, use your whole team. Contact the pediatrician if a specialist tells you something you aren't sure of. Talk to other docs if you don't feel comfortable with the answers you're getting.
And cut yourself some slack if you don't have the presence of mind to ask all the right questions immediately after getting the bad news. You have every right to take some time to process, mentally and emotionally, before asking the right questions.
Sigh... I'm just hoping this gets better instead of worse. I really am. My stress level is very high right now. If her behavior worsens, I think I might go off the deep end. I already snapped a bit tonight. I don't need any of the kids to get worse!
I think I'm going to self-medicate... with chocolate.

Wednesday, February 15, 2012

Cue the Random

I'm tired and not sure what to write about, so I'm just going to throw out some random crap...

1. Wanna have a weird evening? Watch Disney WWII propaganda films on youtube. Seriously, WTF Walt?

2. Geri's newest, adorable habit is making me and Nick hold hands. During grace she grabs his hand and puts it in mine. If he takes it back for any reason she does it again. I love that she loves for us to love each other. :)

3. Mera has a beautiful future as an actress. I wonder if they give out Academy Awards for the gut wrenching portrayal of a sad Bidoof. (It's a Pokemon)

4. My hubby is awesome. Valentine's day was just another reminder. Did he do anything special? Well, he bought me a CD I was wanting and that was cool, but really it was just a date on a calendar that reminded me that he's awesome EVERY day.

5. There are easier ways to spend time with your kid than taking karate together. But now that we're taking it, I can't quit because it would teach him to give up! Sooooo.... I'll let you know when I get my black belt because I couldn't let my 5-year-old see me quit at something.

6. Need to keep a 4-year-old awake in the car on your way to a sleep-deprived EEG? Open their window and blast them with cold air at 80 mph every time they nod off. I felt sort of evil doing this, but it was necessary and part of me was proud of myself that it worked. On a related note, Nick felt a kind of sinister glee in keeping her awake that night. It was payback, and he's just petty enough to enjoy it.

7. Is the desire to be shirtless a developmental stage for boys? Seriously, TJ wants to take his shirt off as soon as he gets in the door. Then, when Nick comes home, TJ tries to convince him to join in the topless fun. It cracks me up.

And now, some cute.
Geri looks like a cyborg pirate with that patch...

"I dunno, whadda you wanna do?"

The shitless stage. It's gotta be a guy thing. 

So pretty!!!

Why was Mera riding the dog? The world may never know....

Friday, February 10, 2012


I have an airtight argument against evolution, and it's this - children are not built to survive. Any human under the age of 6 is designed to self-destruct without massive amounts of intervention from the older members of the species, so how did the first prehistoric toddlers ever reach maturity?

Seriously, they won't sleep if they get "too tired" and they won't eat if they get "too hungry." If a toddler is left to their own devices, they self destruct due to a combination of self-induced hunger and sleep deprivation. This is, in fact, how nuclear weapons are made. Tired and hungry toddlers are delivered to the enemy and, BOOM, it's all over.

When they're not making noise, they're fidgeting. When they're not moving, they're noisy. They might as well have a steak tied to their necks and a neon sign that says "Hey Saber-toothed tiger, I'm over HERE!" on their back.

They have huge, fragile heads and itty-bitty feet. And this disproportion peaks at about the age they start walking. In fact, that's how you know when they're going to start walking. Their heads swell and their feet shrink. Now I'm no archeologist, but I don't think we've found any cave drawings of helmets yet, so there was no way they had any protection.

And there's no way any human tribes with small children ever migrated over long distances. Have you ever tried to take a 4 year old hiking? They're too heavy to carry, and too slow to walk. And when they turn 5 it gets worse, because now they stop every five minutes to investigate something shiny. I don't know how you say "Are we there yet?" in grunting, but I bet a mass migration would result in two-thirds of the children being thrown into a saber-toothed tiger den.

Too little to throw a spear. Too oblivious to gather nuts and berries. Kids weren't designed for the hunter-gatherer lifestyle. We must have been created as adults in a nice, cozy garden because otherwise the kids wouldn't have made it and the species would have died off! This logic is airtight.

P.S. I'm being facetious on many levels. Please don't start having conniptions over this. :)

Wednesday, February 8, 2012

Coming Together

Attachment is one of those weird concepts in adoption. It's treated as a BIG DEAL, and for good reason. Failing to attach, to some degree, with a reference adult can cause all sorts of problems for kids, ranging from failure to thrive all the way to destructive and antisocial behaviors. As an adoptive parent, you quickly figure out that failing to attach will cause your child to become an axe-wielding maniac or, worse, a guest on Jerry Springer.

Yet, for all the importance assigned to it, measuring it is fuzzy at best. There are certain markers to look for, certain behaviors to encourage, but there's no cut-and-dried measurement to figure out if you're on track. It falls into the "every child is different" category, and that means you can't expect any clear answers from anyone who hasn't directly observed your child... after observing about 50,000 other kids in their professional capacity. It ends up being something of a gut call.

My gut is telling me that we are making great strides with our little Geri-beri.

Eye contact is a huge indicator of attachment in children. Making contact is a sign of connection, and making eye contact happen can actually increase a sense of connection, so it's a win-win any way you slice it. Eye contact is good, end of story. For that reason, I started on a campaign of creating and encouraging eye contact. Geri's visual impairment made it hard to tell at first whether that contact was actually happening, but I quickly learned that if she seems uncomfortable and turns her head then I probably made eye contact. Since figuring that out, I have gotten into the habit of practicing eye contact at each diaper change and working it in wherever else I could. God must be on my side, because Geri decided that she loves peekaboo. As a result, we get to practice this skill all day. I've definitely been seeing more sustained looks during our practice, and more eye contact during the games of peekaboo. But last night, she totally blew me away. I was kneeling on the floor, facing her while she was standing so that we were at the same level. We were doing something else, but she stopped and made eye contact with me on her own. She actually got closer to me so she could look me in the eye, held it for about 5 seconds, then reached up and started touching my face with her hand. It was probably about 10 seconds, total, of happy, spontaneous, warm eye contact. The jackpot of eye contact. I was in heaven and I am still surprised that I didn't cry.

Another attachment marker is physical contact, particularly affection. You don't just climb into the lap of a stranger and cuddle, unless there's a screw loose in the brain pan. For many kids who have lived in institutional care, the concept of a hug is foreign. Lately our little Geri has started climbing up into my lap to just be held by me. She sits in my lap for about 5 minutes, then she wants to get down and play for a while, then she wants back into my lap again. This is a GREAT cycle of feeling more brave after being held and then needing to be held in order to feel centered again. It's a version of "checking in", and that's a big deal. A well attached child will naturally check in with their parent in order to gain confidence and comfort while exploring their world. A child with no sense of attachment feels alone in the world and, as a result, would never even think to look for their parent. Checking in is a great thing, indeed. You know what else is great? Real hugs. With an arm around your neck and a squeeze. I got one today. The fact that I had to show her how doesn't detract at all, because she picked up on the concept and started dishing them out. And she is getting used to me kissing her. She giggles when I kiss her lips now.

Interactive soothing and interactive play are also a big deal. Both show that the child is taking an interest in the parent, trusts the parent for appropriate and loving responses, and is able to respond to the parent. They also indicate a brain that is capable of calming and learning! Geri is responding to my soothing more quickly now. Sometimes, all I have to do is pick her up and coo over her and she stops crying. This is a welcome improvement from the days that I could hold and rock her for 45 minutes and see no effect. Or the days when she used to arch her back when I tried to comfort her, trying to be put down, but if I did put her down she'd cry to be picked up. And the interactive play is just plain neat. We spent 20 minutes putting things into a bucket and taking them back out. She would hand me items, I'd hand some to her, and the whole time she repeated the word 'bucket' whenever I said it. Pure magic.

Then there's the mixed blessing of preferential clinging. A kid from an orphanage will go to any adult at all because all adults are the same. "You're big. Take care of me." Any parent knows that it's not a healthy, or safe, situation if your kid will just wander off with any stranger over 5'2" who is willing to hold her. When your child starts to whine and cry for you, that's a good thing. When they start crying every time you leave the room, it's a good thing. When they refuse to let anyone else feed them, it's a good thing. All of these are good things for attachment. Of course, when your back is sore and your arms are numb from holding a 35 pound child for hours and you can't go to the bathroom without someone crying about it and you are unable to eat a meal without someone on your lap, it doesn't FEEL like a good thing, but it really is. Geri's newest tricks? She won't eat if I'm not home. She has to sit in my lap to eat, but she will sometimes jump ship to Nick's lap for a spot of cuddling and a bit of food before wanting mommy again. If I leave the room, she freaks out. She's still a little short on the stranger danger response, but she's no longer trying to jump into the arms of anyone who gets within range. In fact, she seems to now view me as important and Nick as cool and anyone else as furniture.

Oddly enough, I find myself being very grateful for her disability. Her visual impairment builds vulnerability into her. She has to rely on us, there's no other way to survive, and that makes her more emotionally available in a sense. The diaper changes and the feedings all reinforce our role as caregivers. If she had her sight, she would probably not need us to do these things and would not be willing to allow us to. It's an interesting dynamic, really. Many people would shy away from adopting a child with a medical condition because they think it would be too hard. Yet a healthy child has more resources at their disposal for rejecting you emotionally, and that's about the hardest thing there is. Geri's pediatrician actually mentioned this to me before - that he sees the best overall outcome in the special needs adoptions because the child's disabilities serve to facilitate bonding. The disabilities also force parents to have realistic expectations for their child, and that relieves a lot of familial pressure.

Of course, this is just one view of attachment and it's a narrow one, at best. There's no ideal timeline for bonding, and there's no measurement of completion or fullness that can really be applied to all cases. Which really ought to be liberating! Since there isn't a timeline, there's no hurry. Since there's no test, you can't fail! It's a relationship, and like all relationships, it must grow into it's fullness with time. That said, I still relish any evidence of progress because it makes me feel like we might just be doing ok. And when I think about it, I have to admit that we are. We are actually doing okay. Improving all the time, slogging through the setbacks when they come, and generally seeing things get better with time and patience and love. Sometimes it feels like it's falling apart, like it's not getting better, like it's going to blow up in my face, but then something happens to remind me that we're doing great.

And that's the wisest thing I know - don't judge your life by this moment. It's so little compared to the past, and you have no idea what the future holds. Cling to the promises and keep going, because this moment has already gone.

Tuesday, February 7, 2012

Update and Reflection, I guess

So, a word about our Geri and the surgery-that-wasn't. Because it wasn't. We went up to Denver, got her settled in at the hospital, then brought her to the OR for the gas and headed down to the cafe for lunch together. I've been joking for weeks that the anesthesiologist is our babysitter and we were finally getting a date. Well, the date was about 30 minutes long. We had just eaten some lunch (it was yummy) and we were discussing seconds when my cell phone rang. It was the surgeon. I have to be honest, my first thought was "What the heck are you doing? Get back in the OR!! You are supposed to be BUSY!!"

He told me that he was done. When he performed the exam under anesthesia (EUA) on her eyes, the pressure in her left eye was normal! He can't justify operating on an eye with normal pressures, so he completed the exam and called it good.

"Ummmm... what? Seriously?" Yes, seriously.

When Geri had the surgery on her right eye, you might remember that she also had a laser procedure on her left. In that procedure, they basically killed off half of the gland that produces fluid in the eye. That, coupled with her drops, reduced the production to basically zero. But here's the crazy part... fluid has been escaping the eye! I mean, that's the only way the pressure could possibly go down. I keep thinking of blowing up a balloon. If you stop, the ballon stays the same. If you want the pressure in the balloon to go down, you have to open up a hole and let the air out. Well, somewhere in Geri's left eye there's a bit of drainage because the fluid has gotten out. But this is the eye that has had higher pressures all along. The eye that is more distorted. The eye that was "worse." How on Earth can the "bad"eye suddenly start draining after 4 years??? One word... God.

During the exam he also found that her right eye has decreased in circumference by 1mm. We thought it looked smaller, but here's proof. Wow. God is good.

So now the plan is another EUA in 6 weeks, at which point he'll check the pressure in the left eye again and proceed with surgery if it's gone back up. It will go back up at some point, since the laser procedure is only effective for about 6 months and then that section of gland will be in production again. Surgery is going to happen, but not right now.

I'm grateful, in a way, but also too stunned and confused to fully process my gratefulness. It's nice that she gets a longer break between surgeries. It's more time to become attached to us. More time to adapt to her surroundings. More time to gain weight and figure out what caused that seizure and such. More time for us to accumulate money for medical expenses. Yet, the knowledge that we're only on a temporary reprieve makes that reprieve feel almost pointless. I know God is up to something, but what? I have to wait and see.

In the meantime, she's stopped taking naps again and her night-time wakings ramped back up. Which is why I'm sharing the below from a blog I just saw today for the first time, bogueandweejer. Enjoy!

"And I know the exhaustion is just a phase and soon, they'll be in elementary school and I'll miss them terribly during the day. And then they'll be in middle school and too cool to hug me in front of their friends. And then high school when we're fighting all the time and I'm grounding them from their holographic games and hover craft. And then they'll head to college and we'll be like WOO HOOOO!!!! Except we'll really really miss them and look through baby pictures and not even think once about or even remember the "hard" days."