Onward

After weeks of evaluations, we are now in the thick of OT and PT appointments and daily OT and PT work at home, and sensory activities, on top of three types of patching to help fight the double vision Stella experiences. More VT (vision therapy) will come after we finish laying the foundation with OT and PT.

We swing Stella in a blanket hammock each night. We do odd-seeming but clearly very powerful reflex integration exercises. We toss bean bags, and when we miss we re-enact the errant bean bag’s flight and laugh at how it plopped on the side of the coffee table instead of landing in the laundry basket. We become bears, after: setting up a blanket cave, laying fish in a river of blue silk scarves set up across the room, and cuing up gentle river sounds on Spotify. Mama and baby bear take turns hiking to the river, hunting for fish, and then hiking back with fish in mouth. And we put that fish on a party plate because we are fancy bears, with CLASS. And it’s magic because Stella will do bear walks again and again and use flat paws like therapy dictates instead of the fist or twisted finger-tipped paw she naturally prefers. She cooperates with her “exercises” to a much greater extent than I dreamed possible. Much of it is not labeled as exercises. It’s just fun stuff we do that happens to be really beneficial. We are mindful of fitting in lots of silliness and games and stuff that have nothing to do with therapy, too. Because you’re only 4 and a half once, and you better enjoy it. And, okay, Stella’s cooperation followed an extremely rocky start to the new therapy paradigm that resulted in a two-week reward calendar that culminated in a trip to the Disney Store to get the plush toy of her choice. She chose the peas in a pod. How adorable and wholesome is that? I mean honestly.

We are also trying to figure out where Stella will go to school next year. A process that I never imagined would be this complicated and crazy. While her therapy needs and developmental status were being evaluated, all the application deadlines passed. But just in time, I found the perfect school. A private school in our neighborhood with transitional Kindergarten that would be so expensive but so worth it. But will they have a spot for Stella? Will they think she’s ready and are they willing to help support her quirks and current challenges? I don’t know. She goes in to be reviewed this weekend. It’s out of my hands now. If she doesn’t get in, I’ll have to scramble to get on waiting lists. Or something.

I’m pretty stressed out and worried again. I read endlessly about neuroplasticity, which actually helps a lot. Not only with hope for Stella’s binocular vision and associated motor skills but also for better coping and handling of stress on my part. Stella’s brain can change and so can mine. So can yours. Watch this if you don’t believe me. (I just ordered the book: The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science.)

I think we’re doing okay. We are getting most if not all of our daily exercises in every day and we are not battling. We are having some real fun along the way. Not so much with the patching, though. Most days, we have been missing one of the three types of patching. It feels like a bit too much right now–how much can you push a little one before the solution becomes a problem? But we’ll figure it out. Stella’s developmental optometrist is in constant contact with us, proactive about new solutions both short-term and long-term, and very tolerant of my incessant questioning and reporting and occasionally getting upset about it all.

Ah yes, the word of this day is “but.” As in, “This kind of feels impossible BUT we are making it work” or “This is hard and I don’t know how we’ll fit it all in BUT we will find a way” or “I am scared that Stella will hate this activity and we will fail to do what is necessary BUT I have to try” or “I know Kettle Chips aren’t healthy BUT I need them at 9:30pm on a consistent basis.”

We would do anything for Stella. Before these evaluations shed more light on the extent of the issues she faces, we felt our parenting was to blame. We have more complete answers now, and new wind under our sails! The key is a worn out cliche: just take it one day at a time. If I think about a year or two of daily OT, PT and VT exercises, and the reasons behind them, I feel sad, overwhelmed, and discouraged. If I just think about today (or even tomorrow), and what I can do to help now, I come up with creative ideas that work, and wind up feeling buoyed by small successes. Like the above bear scenario, which while a tiny drop in the therapy ocean, felt huge. She hated bear walking, and now she asks to do it again and again. Charlie Sheen, you don’t know what winning is.

My only guilty failing is in giving Stella a piece of hard candy for her nightly reflex integration exercises. It feels wrong, but I was desperate. After discussing with Stella’s occupational therapist and seeing how she worked with Stella, I plan to come up with a special toy for her to hold during nightly stretching and other exercises instead. Preferably something that lights up and features a small keyboard worth of buttons to push and explore. Tips welcome.

My daughter is so resilient. She is a bright spark that nothing can fade. I didn’t think it was possible but I am even more proud of Stella now. And sometimes, of myself too. Go figure.

Advertisements
Posted in Uncategorized | Tagged , , , , , , , , , , , | 7 Comments

On my parenting journey, and “Far from the Tree.”

My child is strong and healthy. That said, at just four years of age, she has already taken part in occupational therapy (OT), vision therapy (VT), cranial sacral therapy, and yoga therapy (also called Integrated Movement Therapy or IMT). Her vision conditions, and early feeding aversion, have presented us with atypical challenges. Yet there is nothing “wrong” with Stella. No affliction that will define who she is. Deeply grateful for her essential wellbeing, I am always striving to provide the support she needs. An odd and awkward balancing act, at times.

I’ll admit that during her tube-fed days, while entertaining the worst possible outcome, I told myself that if she had to live her life with a feeding tube, the intervention could inform positive trajectories. I dared imagine her future as a groundbreaking artist exploring the increasingly common intersection of biology and technology. Or perhaps she could come to value food more than any average, orally eating person, and find renown as a chef who never enjoys more than a fleeting taste on the tongue but whose culinary innovations leave the ordinary far behind. These ideas seem foolishly focused on fame and success, but in my darkest postpartum, tube-feeding moments, they allowed me to envision a happy future for her wherein her difference was not just a detriment. I took comfort in knowing that the most inspiring people often have the most trying backgrounds. After a successful tube wean at just a few months old, she became an eater in short order. She is now four, and her sizable appetite won kudos this Thanksgiving from Cody’s 94-year-old grandmother. I can’t lie: I wear that compliment like a gleaming badge of honor. If Stella had needed her tube indefinitely, though, I like to think that we would’ve embraced it yet not let it dominate her identity.

I have worried about her far too much, and still do. More VT and OT are on the near horizon. Strabismus and amblyopia can affect motor skills, so the VT and OT are linked. When Stella’s eyes aren’t working together well, our world becomes less stable along with her binocular vision, and tantrums skyrocket. I question myself, my personality, my attitude, my words, my own diagnosed deficits, and then I question doctors, and PubMed.gov, and Google, to the point of black-hole depression. Instinctively, I blame myself for Stella’s every struggle. I prepare myself for the worst while researching, hoping, and double-checking in pursuit of the best.

My experience with motherhood is a soft, tropical breeze compared to the realities faced by the parents featured in Andrew Solomon‘s incredible and essential book, Far From the Tree: Parents, Children, and the Search for Identity. But then, toward the end of this gripping tome about parents of exceptional or “different” children,  he notes that a couple in London chose to screen embryos, essentially genetically engineering their child, so as to avoid the father’s severe squint. (For those with stereoscopically typical selves and kids, “squint” refers to strabismus or misaligned eyes.) This particular anecdote helped bring the entire book home for me, and felt like a sucker punch to the gut. I imagined their alternate-reality, unscreened child, much like Stella or perhaps the inspiring Stereo Sue, who would have been born cross-eyed. Surgery, glasses, and vision therapy could have corrected it, with much joy and love to be had in the meantime. Yet, strabismus was deemed too much of a burden. What an ugly and spiritually impoverished world, I thought, in which technology eliminates differences. What a waste of potential and perspective. What a horrible message to send: “We only want a ‘perfect’ child.” As if that exists! Then I think of the four eye doctor appointments we recently attended in less than two weeks, and I’d be lying if I said I didn’t wish to spare her from stingy eye drops, and double vision, and headaches, and frustration, and eye patches, and exhausting daily vision exercises. But you can’t take the squint from Stella. It’s part of who she is. To cut that out of the picture would be to paint a completely different child, the thought of which is dark, insane, and brutalizing in the light of our love for her.

Stella’s vision and the severe pain from my milk, and subsequent trauma from repeated insertion of an NG tube by ER professionals and yours truly, have likely affected her personality or personhood. We’ll never know to what degree. To assume that the impact is solely negative is a biased, ignorant, and even dangerous assumption. Among many other strengths too numerous to name here, I see a child who is an incredibly strong and increasingly eloquent self-advocate and self-starter, and who is very in tune with how she feels and what she needs. (She is the opposite of a doormat–not angry, but aware and, well, adamant!) It’s possible that these building blocks could lead her to become a defender of others’ rights and wellbeing as well.

As I marvel at Stella’s abilities and resiliency and simply enjoy mothering and being with her, I am anxious about possible gaps in development and the winding road stretched out before us. As children grow, visual demands increase. More “near work” and expectations of longer attention spans. Learning to read and write. Using scissors. Making friends and maintaining eye contact and higher level relationships with them. With bifocals and a year of vision therapy (undertaken at age two) under her belt, Stella’s visual abilities have served her well until recently. Her visual system apparently has begun to reach its coping capacity and needs help in order to support her continued development. She will benefit from an increased eyeglasses prescription, and an OT evaluation to help create a more targeted approach to vision therapy. In the meantime, I pray surgery won’t be needed and wrestle with uncertainty about whether she should go to Kindergarten next year, as vision issues flare, and her birth date just a week before the cut-off for Kindergarten acceptance.

For the sake of sanity and enjoyment, I longed to read something other than strabismus-oriented studies, optometrist’s blogs, and medical journals. But I wanted meaning and relevancy, not fluff. Far from the Tree was the answer, and led to some sleepy days for me. I read all 700+ pages almost compulsively. Filled with the stories of parents of children with Down’s Syndrome, autism, dwarfism, criminal behavior, and more, the book is sometimes harrowing but always heartening. I found it a welcome relief from typical parenting fare, which tends only to feed modern parental neuroses and our fear-driven obsession with perfection. Most of the parents featured in this book love their children with a depth they may not have achieved outside of their unexpected journey. The line between difference and disability is often blurry, and in that gray area lie gifts for those open to seeing and receiving them. The vibrancy of deaf culture and the contributions of Temple Grandin are good examples, among many, many others poignantly detailed by Solomon.

I feel differently about my role and experiences as a parent, thanks to Far from the Tree. I was affirmed by the book, and I think just about any parent would be. Current turmoil and all, I am more determined to do whatever I can for Stella’s vision, yet less destructively worried. And this mindset may fuel better decision-making. Check out this passage from page 22, which brought me to tears:

“The attribution of responsibility to parents is often a function of ignorance, but it also reflects our anxious belief that we control our own destinies. Unfortunately, it does not save anyone’s children; it only destroys some people’s parents, who either crumble under the strain of undue censure or rush to blame themselves before anyone else has the time to accuse them.”

To Andrew Solomon, with whom, by the way, I share the dread-filled experience of waiting for the results of a baby’s head CT scan, thank you for writing this book. In regards to my daughter, I’ll inevitably worry, and wonder how much intervention is enough or too much, and blame myself at times. But as a parent, I move toward the challenges ahead with more grace, having read Far from the Tree.

Posted in Lessons in parenting, motherhood, Stella's eyes, Uncategorized | Tagged , , , , , | 11 Comments

How do you solve a problem like IKEA?

Ah, the joy, elation, and shock that zinged through our brains when upon entering the giant maze, Stella demanded to go to the play area at IKEA. Smaland. We’d never even tried or considered it before. But finally she was ready, independent, proactive, long since potty-trained, and wanted to have fun without us, while we embarked on the sojourn that is an IKEA shopping trip. It was truly glorious.

As we signed her in, we were told in a dead serious tone that there is no jumping into the ball pit. No jumping. Into. The ball pit. A small pang in my gut. A spark of doubt that I instantly mostly extinguished in anticipation of kitchen shopping without herding and wrangling. Stella could hardly wait to get in there, and we had a kitchen to plan! It’s the heart of the home you, know, and duct tape currently holds our decrepit failing one together. We are on the verge of kitchen failure and no bypass will help. Only a transplant from IKEA. This procedure is urgent.

Ominously, the rule was repeated a couple more times as we checked in. Perhaps they noted Stella’s high energy level, they way she could barely stand still to get the prison sticker slapped on her back. Perhaps they knew that the rule was inhumane, and everyone needed to hear it ten times for the grim reality to sink in. Oh, also, sort of an addendum to the main “no jumping” rule: There is no going under the balls. The gist: Sit in the ball pit like you’re an 80-year-old enjoying a warm sitz bath, and you’re golden.

Stella was escorted into Smaland, and we turned the corner to catch a glimpse of her behind the glass. She was already in the ball pit by the time we turned the corner. I saw her get out, look around surreptitiously, and execute a very timid jump. Trouble. But also, not my problem. I noted a small foot peeking up through the balls next to Stella. In that corner of Smaland, she’d find her people. They would likely band together and stage a coup, which is a character-building, free-range activity. So, off we went to look at eco-friendly and eco-unfriendly countertops and high-gloss cabinets and to discuss the merits of single- versus double-basin sinks of different gauges.

In the meantime, we chatted with a couple people. A countertop guy and a kitchen expert. Like, we really conversed with them instead of pretending to listen while fake-nodding and monitoring Stella the climber. Before we could even decide on anything–perhaps we were too giddy to focus–the buzzer was going off and it was the first time in my life I could identify with Cinderella. Our cart was about to turn into a pumpkin! Oh the relentlessness of the clock! We must run, run, run to Smaland before our child turned into a mouse, or something!

The matronly gatekeeper solemnly informed us that Stella had jumped into the ball pit, and been temporarily removed, TWICE. Later, I asked Stella what they said to her, in an attempt to glean some indication of how the staff handles rule-breakers. Are they angry and mean? Are they calm but firm? In response to my simply stated question, Stella dropped her shoulders, head, and voice, looking at the floor and saying slowly and in a resigned tone, “No jumping in the balls.” Fair enough, IKEA. Fair enough.

Some quick googling will reveal that the “no jumping” rule is either new, or not universal. Here is an image, from IKEA’s Swedish site (the home site!), showing a girl at the tail end of what is clearly  a jump into the ball pit! Apparently in the U.S. as recently as 2006, as one blog post I found revealed, it was not only okay to jump into the ball pit, but encouraged by design! Other more recent blogs share tales of woe, stories of reprimand, lamenting jumping ban. For example, see the extremely aptly named post, “No Jumping In the Pit?!?!

It’s obvious and business as usual, isn’t it? Someone got hurt in the past few years. Hopefully not maimed. Their family sued IKEA, and now no child in our entire country can jump into Smaland’s ball pits ever again. Apparently, a waiver is not enough. Only total censorship of enjoyable activity will do. But does it really make kids safer? Doubtful. Kids are actually not walking bags of rocks. They are smart, and can figure things out. They can learn to watch out for other kids. They can communicate with each other and work out ways of jumping in without landing on each other. The Smaland staff probably have to invest a lot more time and energy monitoring the ball pit, and scolding kids for jumping from what is literally a one-inch height into the ball pit. Oh yeah, I forgot–you’re supposed to “slide in.” Oh wait–there’s no slide. All around, it’s a slap in the face of fun and, frankly, a dumbing down of childhood.

Yes, I’m making a big deal out of nothing. But perhaps I wouldn’t care so much if this rule wasn’t part of a really lame epidemic of risk phobia that results in kids’ independence and activity being severely limited. It’s sad. They are receiving terrible messages over and over again, along the lines of: ‘You can’t handle basic responsibility. You can’t figure this out on your own. The entire world is dangerous–stop moving so much.’ You could say it’s my pet peave, along with packaging. Equally oppressive.

Stella now refuses to go to Smaland. I don’t care how glossy my cabinets will be. Like a flimsy birth veneer, IKEA has lost some of its sheen.

Posted in Family update | Tagged , , , , , | 3 Comments

Eating lunch (or not) and why I’m packing brussel sprouts

Stella attends preschool across town.  It’s a long, crosstown haul, but obnoxiously scenic. We skim the north end of Lake Union, gazing across the glimmering water at the cityscape, Space Needle, and all the quirky houseboats that the line the shores. The trek takes us through Fremont, past the troll and across the world’s most frequently opened drawbridge, a title clearly earned due to low clearance and heavy boat traffic. This bridge adds an element of excitement to our commute in that at any moment, it could go up, sending our already slim chances of being on time out the window.

Near that famous/infamous bridge is a natural foods grocery store where Stella loves to enjoy a slice of pizza or beans and rice. Now that it’s official and obvious that everything people enjoy eating–especially brown rice–is unhealthy and potentially lethal, those two options seem more equally weighted. Kind of takes the pressure off, you know? Stella often demands to go there after school, and I usually say “no-we-can-make-pita-pizza-at-home!” But sometimes, when I’ve only consumed a mere four cups of coffee and half a muffin all day, we dine there and then walk down to the chocolate factory for twelve-ish free samples and a bar for my stash. A stash used to be secret, until this week when I found Stella on a chair she’d dragged across the house, finishing off the stash of very dark chocolate, saying slyly, “I’m a chocolate robber.” My point? Stella is a good and eager but sometimes sneaky eater. Clearly, she prefers to hold out for what she perceives to be the best possible food options. She does not consider the lunch I pack to be a great option and has found ways to avoid it altogether.

You see, Stella typically eats about two bites of lunch at preschool. That’s not new and, actually, not uncommon. At pick-up time, I often see other parents peeking into their child’s lunchbox and frowning dramatically. This year, Stella did some mental math when she noticed that I stocked a large Ziploc bag with bunny crackers, chocolate chip granola bars and the like. This is the snack pack all parents must provide as back-up in case the impossible happens and a kid eats their entire lunch and is still hungry. Stella is now using that snack pack knowledge to game the system. She is not eating her lunch. Instead, she waits a while and then asks for snacks from her snack pack because she is so urgently and desperately hungry, but only specifically for her snack pack.

My plan is to extinguish this habit by replenishing the nearly empty snack pack with very un-exciting snacks. Kale chips. Raw nuts. Maybe some raisins if I’m feeling less evil. Definitely some nutritional yeast and old soy sauce packets. If they had a better shelf life, I’d stock it with brussel sprouts. Onions might work, actually. That’s it–I’ll just pack a bag of onions.

It’s been years since I worried about how much Stella eats. But it annoys me to an almost pathological degree when Stella snubs the salami, bell pepper, and pita bread, or organic f’ing adorable round tortilla chips and cuban black beans, or pumpkin-shaped cheese sandwich and grapes. I choose these things because they are wholesome but also because I know she likes them! But no. The thrill of eating half of a sawdust-like cereal bar is too great. She can not resist.

And for those of you who are still not on board with my frustration and see my tactics as cruel: When I first heard about this lunchtime avoidance/snack-pack-reliance practice, I oh-so-compassionately packed bunny crackers in Stella’s lunch so that she would just accept her lunch, eat at least some of it, and not bug the teacher about raiding the snack pack for bunny crackers. This strategy failed. Stella did not eat the bunny crackers! No, because they were provided lovingly in her lunch and did not have to be commandeered from the snack pack, apparently. Can I get an “ARGH!”

But it’s all good. My plan is in place. Lunchtime order will be restored. If I could just rig the Fremont Bridge to stay up when I’m in the vicinity, we’d be golden. Aside from inevitable brown rice arsenic poisoning.

Posted in Uncategorized | Tagged , , | 2 Comments

Look what the cat granddaughter dragged in!

Hello, blog. How are you? What? Those bags under my eyes? No, ten years haven’t passed. I’m just really tired. Mom tired. Recently-nighttime-potty-trained tired. You get the picture. Not a picture of me until my next haircut, though. I need bangs to distract from the bags.

So, Stella wears bifocals now. I think they are making a real difference. She had a growth spurt and the stress of that seemed to  bring out some crossing at near, even with glasses. The bifocals keep her eyes straight, and as a result I see renewed interest in painting, drawing, and writing. When it comes to art projects at school, Stella is a severe minimalist–we’ll see if that changes.

She also took the Wachs Analysis of Cognitive Structures Test (WACS). The point was to find out how Stella’s vision affects her development–and it showed delays in visual motor and visual information processing. I’m not even going to get into the particulars right now. There are a lot of them and I’m still mulling it over. I’ll just note that Stella’s pretty darn amazing. What did Darwin say? Something about how it’s the ability to adapt that determines who survives and thrives. Stella’s brain figures out ways to do things that should be almost impossible. Which is kind of why I’m throwing my hands up at this point.

Yes, Stella gets frustrated sometimes. Very, very frustrated. (It’s partly why I had the testing done.) But so do I. Someday after ripping off her shirt buttons in frustration, she’s going to look at me and say, “You, all right? I learned it by watching you!” The test results claim that everyday tasks are harder for Stella and that her frustration is partly due to intelligence–she is aware that things are harder than they should be and she wonders why she can’t do things more easily. So I take that into consideration. I’ve been presented with an option for working on this. The thing is, she can do so darn much. And she’s only four, and newly so. She’s already done a year of vision therapy and patching.

Stella joyfully participates in yoga, creative dance, and gymnastics. She swims regularly–without floaties now, too. She enjoys going to preschool three times a week. She loves puzzles, workbooks, books, playgrounds, watercolors, and pretend play involving silly bumblebees that bump into walls and make popcorn, and two dogs who have a cat for a granddaughter. If you trip, Stella will ask if you are okay. She remembers book after book. She is sweet in quoting them, like when she says to me, “I’ll eat you up I love you so!” and then pretends to chomp on my arm. Every night before she goes to bed, we all sing the alphabet backwards, then I tell her, “I love you always, and I love you lots.” She sometimes says, “I love you always, and I love you SEEEEEEBS.” Just to be silly, to make us laugh.

While day-to-day things can feel harder for us at times, I’ve always secretly chalked it up to the fact that she is sensitive like me. For example, you know all those instances when a little kid innocently answers a question, and everyone in the room laughs heartily because the child’s reply, tone, or all-around cuteness is just so cute? Stella f’ing hates that. Actually, she seems truly wounded by it. Sometimes her response is anger, but more often in such moments I see her face fall dramatically, her breathing deepen, and tears well up slowly and steadily–the kind of tears that are raw and unmasked by anger, pushed up from way down inside because it’s a real hurt. I figure she’s smart and she doesn’t like being laughed at when she’s not trying to be funny. I mean, do adults like that? Not so much.

Social situations can be tricky for us, sure. When Stella doesn’t want to talk to you, she really doesn’t want to talk to you. But is that the sign of a problem? The fact that she doesn’t do things just to please other people? Just because an adult is asking something of her? It can be awkward when Stella doesn’t respond to people in the way they want or expect. She buried her head in my shirt to avoid looking at or talking to her pediatrician at her 4-year check-up (he’s a man–I think it’s time to find a woman to replace him). But I see Stella’s social side, too. She has friends. She loves her classmates, teachers, and family. She comes around, when she’s ready. I do think her vision affects her. I also think she’s simply her own person.

We continue to monitor her vision and look for ways to support her. But mostly we admire and enjoy Stella, just for being Stella.

Aside | Posted on by | Tagged , , | Leave a comment

Perilous Play

Please do not do anything fun or exciting. Don’t you know that the world is scary, and you are incapable of navigating it on your own?

The Micromanagement

“Make sure both feet are always on the rope,” said one mom. Her hands had a death grip on his ankles as she literally placed her seven-year-old son’s feet for him as he climbed a net-like structure. A mild panic overtook his facial expression. He descended in terror. Mom suggested a swing instead, and he obeyed. Surely a fun day, full of awakening, for that kid. Inspiring that he found a way to move without ever lifting a foot. His confidence must have skyrocketed!

“Stop that! The hill is not a slide!” A fed-up dad literally spat those words out, so disgusted that his five-or-so-year old son slid down a small dirt slope, leading to sand, on his behind. The same dad expressed complete revulsion at the “soup,” a mixture of berries freshly plucked from nearby bushes and water from the fountain sullied by a bit of playground sand, that his daughter proudly produced in the bucket they’d brought. “Don’t get that on your hands! Don’t touch that!” I couldn’t help it. I rolled my eyes and I hope he noticed. Maybe he only sees his kids on weekends? They knew how to play. When he told them not to do something so basic and harmless, they had to good sense to act puzzled and ask, “Why?”

While it’s easy to focus on these killjoys, who allow their own anxiety to rule, there are many parents who understand the joy, learning and healthy sense of accomplishment that free play brings. I focus on them while we’re out. The way I did when my three-year-old daughter literally climbed over that seven-year-old’s head. And when she rolled down the hill, past the fearmongering father, in glee.

Happiness overtakes me when I hear the words, “I love you.” But when Stella says, “I did it!” I truly share her thrill.

Aside | Posted on by | 2 Comments

Merry Christmas and a Happy New Home

Back on October 1st, after a family vacation in California, a third birthday purposefully infested with ladybugs of the stuffed, cupcake and pinata varieties, and well-executed flower girl duties in Minneapolis, we moved into our first home.

We’d looked at about 40 houses. With. Stella. You get how astounding that is, right? As we drank champagne after getting news that our offer had been accepted, I realized I remembered frighteningly little about the abode we were about to drop almost all of our non-retirement life savings into. Because with Stella in tow, only half of my attention ever went to the house we visited. Maybe 60% on a good day when our real estate agent had luck distracting Stella with dandelions (God bless that woman). I’d say the record low was 15%, when Stella wouldn’t let me put her down and also insisted on snacking continuously. Try assessing property while holding a 35-pound human and balancing a small container of rice crackers—which, if they are food, are incredibly vulnerable and insecure, because they weigh nothing, are easily flung, and if you look at them the wrong way, they’re crushed. So, add the tasks of rice cracker protection and emotion coaching of a giant clingy toddler to the pressure of finding the right home and you’ve got a recipe for half-assing a momentous process.

I don’t think I ever opened a kitchen cabinet, in any of the homes we looked at. We managed to find “the one,” apparently mostly by gut feel. Way too late, I peppered Cody with hysterics along the lines of, “Was there some sort of weird pantry in the kitchen? Um. Doesn’t that place have a lot of road noise?” Sometimes my ignorance resulted in delight: “Wait. There are two bathrooms? And another unfinished one in the basement? Sweet!” And because Cody and I moved several times during our apartment-dwelling years and consistently failed to check on this crucial detail, with devastating effect on quality of life, I looked at Cody and he looked at me and we both had terrified expressions and no words were needed. We realized simultaneously that we didn’t know if the place had a dishwasher. It did. But a week into living there, we realized it was broken and we’d been eating off dishes that had been weakly rinsed in tepid water. Then we bought our real shared dream, a new dishwasher with features we never dared imagine after two years with half an ancient dishwasher on wheels that we hooked up to our sink all classy like. The new stainless beauty? It’s been sitting in the corner of the kitchen with the plastic still on the sleek handle, taunting us, because we simply could not hook it up to pipes that turned out to be corroded beyond belief. Water flow was restricted to the diameter of a human hair, then Cody touched it and its structure went from pipe to pile. Fixer-upper ownership is a rabbit hole of setbacks, with bursts of dizzying progress that illuminate how lame the rest of the house is.

This wonderful place with all its infuriating, fabulous potential was built in 1959, and has some classic mid-century style. And some of the ugliest 70’s light fixtures ever produced, and three layers of gross vinyl underfoot in the kitchen—held together by a seam of frayed duct tape. Those, for example, are the little touches most people pick up on during the search process. Thankfully there’s a lot to love. I adore the globe lights, the high sloped ceilings, the generous eaves that keep the place feeling cozy and protected in the rain. I love the beautiful wood floors with their new matte finish, and all the open space. We settled for a neighborhood we hadn’t initially sought out, and wound up with some very friendly neighbors who welcomed us with coffee, soup, and a My Little Pony. Score, score, and score.

Despite wanting so badly to move out of a rental that came to enrage me, I was shockingly sad when we did. Though technically not Stella’s birthplace, it’s where I became a mother. Its location, if not its living space, was to die for. My hope is that someday we’ll be able to afford a home we love in that neighborhood, but not yet. Not by a long, pathetically out-of-reach shot. That little blue craftsman is where for 48 straight hours my pregnant self worried psychotically about having eaten carpaccio, where I went into labor with Stella, where we brought her home for the first time, where she encountered and overcame painful feeding troubles (by now the sweet triumph overshadows the heartache), where she learned to walk and talk. From there we’d stroll to the park, cafe or grocery store down the street, once or more a day.

Stella loved her home, and we loved its location, but it wasn’t sustainable or financially prudent. It was small (too cramped to welcome family, all of whom live very far away) and dumpy and needed a lot of work and as renters we weren’t about to do it ourselves. I’d gotten to the point where I blamed that place for all my ills. It was unfair. Though I’m pretty sure the house could be indicted for crimes against Feng Shui, as in: Having to use a hamper for a closet-blocking side table and spilling my chamomile through said hamper for the tenth time (I just know someone smoked there back in the day because I could smell it when the floor got wet), a closet that made our clothes smell like a rotting consignment store, ten inches of usable (admittedly cluttered) kitchen counter space, the need to again clean any pot or pan to remove possibly lead-containing wood-paint dust before use (though it did add a nice smokey flavor to stews), wanting to have people over but always refraining due to over-the-top insecurity about the burnt vinyl floor that looked disgustingly dirty even when clean, worn raw floorboards that creaked maniacally, and menacing plaster that appeared to bubble and drip from the walls like sad lava. We’d worked hard and saved money and we were tired. Mainly from the parenting demands of toddlerhood, but also from challenges including eye patches. Sheer exhaustion that threatened to eat us whole. Especially given a completely lack of grandparents, aunts and uncles around to help with Stella, we knew we needed more of a refuge. A place we could make work for us, and provide comfort for us. We’re still tired, because of all the DIY needed around here, but Cody and I are more hopeful and less stuck now. And there’s something energizing about that. Stella is witnessing our efforts to build, improve, and create something we’re proud of. That’s got to be better than hearing her mom yell at utensil drawers with road-rage intensity.

There’s a bit of an underdog element to the story of our first home. We beat out four or five other offers, two of them all cash, thanks mostly to a pre-inspection and partly (maybe?)  to a letter I wrote. The elderly owner had died, and his children wanted to sell the house as quickly as possible, preferably to a family. We served up a very solid down payment, excellent credit scores, and a pre-inspection that told them that we weren’t going to back out. Of course, I like to think that my writing helped us get this house, not just through earnings that helped make the down payment possible but by sheer force of charm and skill. I love that there is now a bit of legend associated with the purchase, a tale I can flagrantly exaggerate as the years pass.

We’ll overlook the fact that 10% of our renovation budget was spent removing dead trees–one of which fell on our neighbor’s house two hours after we officially took ownership. That’s right, 120 minutes in. A month before we even lived there. Turns out several trees, about 60 feet tall, were suffocated by swarms of ivy. But. While we were told that a new roof was in order, and so we’d mentally allocated thousands to that cause, a well-regarded roofer told us we had five to ten years on our current roof. It seemed to balance out. The kitchen needs to be replaced, though the footprint can remain just about the same so maybe that will downgrade it from outrageously expensive to mindblowingly pricey. The decrepit main bathroom features metallic wallpaper with “exotic” topless women in a tropical setting. While far less tantalizing, the master bath also needs to be completely updated as well. The toilet in there is frumpy. Cheesy, too. I didn’t think this was possible, but it’s the toilet version of a boxy Christmas cardigan with snowmen around the mid-section.  It’s way wider and dumber than any toilet I’ve ever seen and whoever designed it should be ashamed.

Whenever the toilet gets to me, or I feel like this was too much to take on, I think about those two cash offers and how they saw the value but in the end were told to suck it. And I smile. This place was a good find. We’ve painted. We’ve replaced some doors. The electrical has been completely updated. Cody is re-plumbing the place, and one day, we’ll throw a party to welcome our new dishwasher. After a tutorial from my dad during my parents’ visit, Cody replaced the windows. My dad got rid of an exterior door, transforming a previously unused area of the kitchen into a space for what I supposed you’d call a breakfast nook—you know, with a booth. We got rid of fabulously horrendous wallpaper, so gloriously bad that I felt a tinge of remorse. That stuff had balls. The original oak floors look new. There are sky lights in the kitchen that make gray Seattle days a bit brighter. Several times, Stella has caught sight of the moon through them with the excitement of someone who discovered it for the very first time, and in those moments I feel 100% sure we made the right decision.

While the location isn’t my first or even second choice, it’s convenient and in-city, and the upside is immense. Stella took some convincing, however. Of course. This is a big adjustment and when we feel dead tired for no reason we blame it on the stress of moving. Stella was going to have an adjustment period, we knew. During the transition, she was “off.” She wasn’t herself. Very emotionally volatile, and I even saw her eyes cross once–with her glasses on. Stella was stressed out. And no wonder, as she began her first foray into preschool just before the move. During a visit from grandparents, Stella hit rock bottom. A traffic-laden ride home was the last straw on the camel of a rocky day, and she threw the biggest tantrum I can recall. Ever. The screaming was so intense, so visceral, that I started to think something was seriously wrong.  Like medically and/or mentally.  I frantically scanned my brain to figure it out. And then Stella yelled, in pained fashion, at the top of her overworked lungs: “I WANT TO GO TO THE OLD HOUSE!” Oh.

That was weeks ago. Since then, she’s mentioned the old house several times. Stella’s vision has been assessed and is fine. Her toe-walking is still increased, after having been reduced with help from vision therapy, but she’s definitely herself again. Stella is currently hooked on red beans and satsumas. She is incredibly sweet. She frequently tells us she loves us, she enjoys school, friends, and gymnastics, and delights in everything about Christmas, even the otherwise forgotten paper ornament at the back of the tree. By now we’ve decorated (partially), developed new rhythms and pathways and chasing rituals, walked to the nearby school playground in zig zags, taken the bus to the store, and put up a Christmas tree–and then another tiny tree just for Stella. We got a pair of alien-looking, yet clearly very comforting (to Stella) night lights for her new room that she loves. We made, frosted, and ate cookies, patted pizza dough, cleaned up the yard leaf by leaf, snuggled up and read dozens upon dozens of new and old books. We’ve done the million little things that make a place feel cozy, happy, and familiar—even houses with oozing walls, splinter floors, and style-challenged toilets.

Just yesterday on her way out of the kitchen, Stella suddenly stopped, turned to me, and said, “The new house is my home.” And that’s how it became official.

Posted in Family update | 3 Comments

New glasses, a new outlook, and a wide open space.

Happy New Glasses Day! On our way to celebrate with ice cream. I'm clearly enjoying my three-dollar vanity frames and colorful, American, toddler-girl version of Harry Potter.

Apologies for my last boring update. I felt obligated to ramble through our ophthalmology appointment. More of a Lord of the Rings style saga than a mere appointment. That said, writing it all out helped me put the many little oddly shaped pieces together. A couple of weeks later, we went to Alderwood Vision Therapy Center for Stella’s progress evaluation, to get the input and opinion of Stella’s developmental optometrist, Dr. T, who oversees her vision therapy. We’d forwarded Stella’s records from Children’s ophthalmology department beforehand.

Today, Stella has fabulous new glasses, with the same old prescription. While her ophthalmologist told us to up the prescription, including accommodation of slightly increased astigmatism in one eye, Dr. T advised against it–in line with my questions and reservations. Stella’s alignment is perfect and her acuity still great (both eyes 20/20 up close, less than a line difference at far) with the current, lower prescription. So why encourage further farsightedness and astigmatism with automatically amped-up prescriptions when she’s doing so well as is? As always, I pay attention to how Stella and her eyes are doing. If Stella shows the need for an increased prescription, we will rush out and secure it for her. But not until then.

We have decided to continue with vision therapy for a while, in an effort to amp up that left eye a bit more and solidify her vast gains. Treatment usually runs for nine to 12 months, and we’ve actually only done about eight by now (with a few weeks missed, so really about seven months actually completed). I’ve had this hunch about Stella’s vision: Now that her peripheral vision has opened up, her eyes are in a better position to work together optimally, and just as importantly, she’s more open to the world, including vision therapy. Stella’s vision therapist, Bethanie, is now on maternity leave. Though a quick hug was the only sign of it, I felt the moment was an emotional, if only temporary, goodbye. Bethanie saw us at our worst, and helped bring out our best–mainly for Stella but also for me. It’s a credit to her, really, that Stella’s degree of openness has changed so dramatically that switching to a new therapist during Bethanie’s leave has been no big deal at all. I’m incredulous when I think back to Stella’s early days of mute and reluctant vision therapy sessions. (Okay, and desk-clearing outbursts.) Sure, Stella threw a tantrum today at the outset of our vision therapy appointment with Mandi, but I think it’s because I abruptly took away the giant stuffed dog she was cuddling as we waited. Regardless of the reason, she turned it around two minutes later and sailed on through. By the end, I had to coax her to make an exit.

As I discussed with Mandi today, Stella uses her eyes together–she performs successfully with the quoits vectogram exercise. She can now catch a ball thrown to her. While just months ago she flat-out refused to look up and catch a slow-floating balloon, she now bats one around to herself, or plays catch with one, unprompted and just for kicks. Her toe-walking is now a fraction of what it was. The yoked prism goggles are now comfortable for her to wear, whether base up or base down, whereas getting her to wear them at all was once a Herculean task of mass distraction. She can see a new world in her periphery. There are too many good signs to list. Frankly, you can tell how well (or poorly) we’re doing by my appearance. I accessorize and wear skirts a lot more now. I can’t let Stella’s bouncy curls and chic glasses completely steal the show! Though, they always do. Stella collects compliments the way I collect freckles, and awkward silences.

Yesterday, Stella enjoyed her first independent gymnastics class. It felt like a big shift, after a couple years of “mommy and me” classes (some of them only marginally tolerable to me, and many times her!) covering music, swimming, Gymboree, and her previous gymnastics class at the same academy where she’s now enrolled. For the first time, I was not at her side but watching from distant bleachers at the edge of the vast facility. She took to her teacher right away, holding her hand several times. She sat with her classmates on the balance beam, following the teacher’s motions and kicking her feet in that carefree, unselfconscious way little kids do when they’re content. She smiled a lot. Her eyes were wide open, taking it all in. She drifted away from the class about three times, tempted by the rings, the rope swing over the foam pit (which they were able to gain access to), and to proactively re-arrange the colorful floppy stars on the ground that marked the route of an obstacle course. But I also saw that straying as positive, and part of the process. She is confident to explore, yet she’s also responsive to her teacher and learning to stay with the group. And this was just her first class! A couple of other kids’ parents stayed with them through most if not all of the class, but I simply was not needed. If she’d needed me, it would’ve been fine, and frankly, expected as part of the adjustment. The fact that she dove right in, though… that was hugely telling to me. Completely reaffirming.

Backing up a tad. She missed the actual first class, because I locked the keys in the car. So instead, we went for a walk and I’d planned to cringe inwardly the entire time because I felt like a complete failure, having talked about the class and built excitement about it and, well, paid for the series of eight classes for which no make-up sessions are available. At the outset of our stroll, I was holding her with both arms, in front of me. Stella started beaming suddenly. Then she looked directly into my eyes, with a twinkle in hers, and a hint of laughter in her voice, “I like you, Mommy.” Instantly, my guilt went away and I grew about two inches taller.

In short, during the first class, which should’ve been the second class, Stella was completely unfazed by my absence. Thrilled, even, to be out there embarking on an adventure as a “big girl.” I was so proud and delighted I could float. Unbelievably, I was completely, 100% relaxed. Stella was, too.

Then, midway through the 45-minute class, I felt the searing of emotion in my throat, and tears welling up, briefly. It dawned on me how central I’d been to Stella’s comfort and wellbeing for so long. In the usual motherly way, of course. But also in getting her through some trials: Helping her overcome her feeding aversion which entailed an extremely obsessive effort to figure out what was wrong, then pinpointing the perfect position and timing and planetary alignment in order to ensure that she’d eat, and so it seemed only I held the key and only I knew that we needed to do to get rid of her feeding tube which had become the main problem and it all felt very much like her health and development were going to be flushed down the toilet if I was not hyper-vigilant at all times and when I pondered the situation there were no periods (or sleep) between thoughts, just a few commas in a continuous run-on sentence of anxiety that would not end for several months. Not long after, her eyes crossed severely, after likely having been slightly misaligned all along, and my new task was to address her vision issues and the toe-walking and tunnel vision and accompanying anxiety they created for her. I had the sense that my presence, my being in perfect tune with Stella, was critically important on many levels. Me, me, me, I, I, I! I was very, very important, you see, because Stella needed me all the time. But it’s become clear that she’s on the other side now, having gathered all the wisdom that three years on the planet yields, and emerged from her challenges triumphantly with only some fine-tuning that remains for her eyes. So, yesterday in that expansive, wide-open gym, I relished the opportunity to sit back, and watch her be the happy, well-adjusted child she has become. She looked over at me a couple of times, excitedly telling me something I couldn’t hear from such a distance. But I could feel it. And it was downright miraculous.

P.S. It’s clear that Stella prefers wide open spaces. Yesterday afternoon, as is typical, she tried to walk out into the middle of frigid Lake Washington. “Adventurous” is now one of the top adjectives used, by friends and strangers alike, to describe Stella. And that’s the truth, Ruth.

Posted in Uncategorized | 5 Comments

Judgement Day for Stella’s Vision, Part 1: Ophthalmology’s View

Well, on Friday morning, Stella and I made our way to Seattle Children’s ophthalmology department for her yearly exam. The high-level stats for those keeping score and not wanting to sift through a lengthy post: Clear improvement of stereoscopy, virtually unchanged acuity (still one line different at 20/30 and 20/40, though one examiner saw equal acuity), half a diopter increase in the prescription in both eyes (still 1 diopter greater prescription for the left eye), still no crossing with her glasses, and if I want to, we can stop patching for at least a few months and see how she does. The improvement in 3D seems huge–her eyes are working together!

Here we are, at another crossroads, 14 months from Stella’s initial ophthalmology appointment wherein glasses were prescribed and followed quickly by patching, and nine-ish months from the start of vision therapy. (A typical course of vision therapy is nine to twelve months.) This was slated to be our last month of vision therapy (with regular six-months check-ins, and therapy brush-ups as necessary as Stella grows), but I’m interested in perhaps continuing for a couple months to solidify her gains and help that left eye catch up further. This will be decided in a couple weeks, during part two of Stella’s assessment, in the office of Dr. T, our developmental optometrist/vision therapy practitioner extraordinaire. I’m also eager to hear her take on the ophthalmologist’s findings and prescription.

I’d like to pause and explain why I take Stella to see both an ophthalmologist and a developmental optometrist. I’m a big proponent of vision therapy but I’d be a hypocrite if I dismissed ophthalmology, wouldn’t I? Ophthalmology may have its blind spots but I love getting another, more traditional point of view to consider so I have all the bases covered. It really, really bothers me when people write off vision therapy and developmental optometry based on ignorance and bias. When I bring it up in discussions with other parents on Little Four Eyes (mainly the Facebook discussion board), it usually gets ignored, though there are a few supportive voices. I’m learning to keep my thoughts here, in my own posts on the Little Four Eyes blog, or in welcoming vision-therapy-focused forums, so as not to seem intrusive with my rabid pro-vision therapy agenda. The horror! How controversial of me! (Insert eye roll here.) I don’t take it personally, and simply want to share what’s working for us with anyone who is unsatisfied with the status quo. Because if you look closely at the status quo, it kind of blows. Patching alone is proven less effective, typically with far less enduring results. It addresses the weak eye, but not binocularity, not the brain-eye connections involved with fusion. Amblyopia is a brain issue, not a simple eye problem. So I have created a more powerful, comprehensive plan for Stella than the traditional, ophthalmology-only path would provide. It’s not “either-or.” I’m not narrow-minded about it. Vision therapy has changed Stella’s life in multifaceted ways. Hence my enthusiasm.

Relatedly, I’m no longer so nauseatingly nervous about evaluations of Stella’s vision. It’s simple: I am confident that we have done our best. We’ve done everything possible. I know that Stella has benefited tremendously in measurable “data collection” sort of ways, and in less number-friendly ways that are clearly observable to the people who know and love her. Once again, I am reminded of her tube-feeding and weaning days. The medical system is letting down many tube-fed children, by not helping them wean when physically ready. Quality of life plummets as tube feeding continues. And why does it continue? Because dietitians and doctors are focused on numbers, rather than the child. They are concerned with milliliters of intake, weight and height percentiles, and not the child’s (or family’s) experience or enjoyment of life. They ignore the absence of the powerful but unmeasurable sensation of hunger, and hyper-focus on the measurable absence or perceived inadequacy of oral eating. What I love about vision therapy is its intrinsic holistic nature. How Dr. T held Stella’s hand and escorted her in, and noticed Stella’s toe-walking upon meeting her. How Bethanie notes even slight changes in Stella’s behavior or demeanor during exercises. How Stella’s vision is not evaluated in a vacuum, detached from her personhood and day-to-day reality. I feel that many areas of medicine, not just ophthalmology, could learn a great deal from this model of care.

Back to Children’s. About thirty-nine people were involved in the eye exam process, so I’m not sure I’ll recall exactly how it went down, but I’ll do my best. I’m going to go ahead and break it down because while mind-meltingly boring to many, it could be helpful to other parents and maybe a practitioner or two. I hope so.

Stella underwent a series of exams, then eye drops to dilate her eyes, then another series of exams. And woven in with the charts and cards and gazing at robotic puppies through many lenses was a series of contradictory statements and findings that I found confusing. At the same time, I did note an effort by the Children’s ophthalmology team to be respectful and thorough. All of that considered, I’m not sure we’ll be going back. I may consult with another ophthalmologist, to at least see how the experience and approach differs.

The initial examiner/assistant declared equal vision in Stella’s eyes. Yay! At 20/40. Boo? This supposedly age-appropriate acuity represented a decrease in her right eye, as it had been 20/30 in her previous ophthalmology exam. This person conducted both the first run at the standard eye chart testing, wherein Stella calls out the pictures/symbols she sees, and teller cards screening. During the latter, Stella saw the lines on all the cards presented, with both eyes! That has to mean something great, doesn’t it? Stella even pointed at the lines, instead of just looking at them. Seemed like she nailed it, but what do I know? Very little, it seems.

In the very exciting component of stereoscopy testing, as it reflects binocular vision or lack thereof, Stella showed real improvement! She not only tried to grasp the fly’s wings, as always, but she saw all three 3D characters on lines A, B, and C. Previously, she’d only indicated seeing the character pop out on line A! I felt like this was a big deal, but the moment felt anti-climactic for some reason. Maybe because there was no reaction from the woman doing the exam so there was no feedback in that moment about the improvement. I wanted a parade! At least some balloons and champagne. Step it up, Children’s!

Then the friendly orthoptist, like a breath of familiar fresh air, breezed in and gushed over Stella’s super adorableness. As I recall her doing at past appointments, she checked and re-checked Stella’s acuity–with particular interest this time, after seeing that it had supposedly changed. She decisively measured acuity of 20/30 for the right and 20/40 for the left, as in all prior ophthalmology appointments. Stella just couldn’t quite get the symbol presented for 20/30 with her left eye, but I really thought she whispered it once out of the three or so attempts. This woman was in tune with Stella’s history and status. She cheered the fact that Stella’s glasses still keep her eyes perfectly aligned at near and far. Because that is big and not to be overlooked! She put a negative lens in front of Stella’s glasses lenses, and discovered that while Stella did pretty well, her alignment did suffer a bit with the lower prescription. So I knew then that Stella’s prescription would probably not be decreasing. A bit disappointing, but not a big deal. In any case, it was reassuring to have someone be extra thoughtful and careful. As always, this orthoptist was delightful, and seemed genuinely invested and interested.

While I can’t guarantee the accuracy of my recollection of the order of events, I believe the eye drops were next. At bedtime the night before, and in the morning prior to our departure, I informed Stella about what was going to happen at the eye doctor–including the tingly eye drops. I explained roughly how and why events would unfold. Maybe that helped, because while she squirmed a bit, there was no yelling, no panic, no crying. Amazing. In short, Stella rocked the entire situation like a rock star who ROCKS. It impressed me, and everyone else, that she handled everything so calmly. Then she cruised through a 30-minute wait while half-watching Dora, impersonating a monkey while climbing chairs, and cracker snacking while making me nervous about insidious hospital germs being transferred into her mouth along with each bite.

Then the moment of truth, I thought. Nope! Another guy came in and looked in Stella’s eyes with that little handheld light, various lenses, and the contraption that looks like an old timey miner helmet combined with a futuristic mind reading device. At one point, he said, “Perfect!” What was perfect? Her posture? Her left cornea? This is how I think, people. Yet I held it in. I didn’t question him, mainly because Stella was shy and uneasy around the dude. So I was focused on her.

Okay, finally! The ophthalmologist came in, on a throne carried by an elephant, and warmly greeted us. She was accompanied by another dude. A student? A new resident? Not sure, but this was clearly a teaching situation. Stella eyed him with suspicion. The doctor casually and quickly delivered what could be considered an “intro,” saying that Stella looks to be doing quite well but needs a prescription change. Cool. I didn’t think too much of it as she proceeded to review the notes a bit and take her own measurements of Stella’s eyeballs. Not long into this consultation, another of the several small but confidence-undermining errors of the morning unfolded. She noted that Stella’s acuity was now equal at 20/40 in both eyes. I was all, “It is? Actually, I’ve heard both–that they’re equal and that they’re not.” So she looked closer at her folder and realized the mistake. This is the problem, I think, with Children’s “team medicine.” On one hand it may be reassuring to have many minds and specialists working on the issue of Stella’s vision, but as with her hospital stay at Children’s for GI and feeding issues, it seems to create confusion as information does not consistently track smoothly from one person to the next, to the next, to the next. Which makes me feel hyper-vigilant, as it’s up to me to prevent disaster. Fun!

This next bit almost seems impossible, so I’m thinking I must have actually misheard her. But here’s what I recall. On the topic of Stella’s unequal but close acuity, she said that everyone has a dominant eye, that many doctors don’t consider it actual amblyopia until there’s a two-line difference, and that Stella’s eyes seem to be working together well, but we may want to consider patching. Huh? We’ve been patching for at least nine months. I cut her off as she continued to say, “We are patching,  two hours a day.” She said something like, “Well, two to three hours of patching a day certainly won’t hurt…” I hope not, because you prescribed it, lady. I really am wondering if my hyper-vigilant self simply cut her off too soon and created this whole mess–so put a big mental asterisk there. She then said that it was up to me, but that we could take a break from patching and see where Stella’s acuity lands in four months, at her next appointment.

This when the doctor acknowledged my point of view as a parent. Nice! She said she knew that patching can be tough and that if it was agonizing, a break might be a really good thing for both of us. With a laugh, she said sometimes parents need patching breaks more than their kids, and besides, she was confident Stella would be just fine even if–worst case–her acuity went down slightly in that time, because Stella is still young and has more time for effective patching. I think I forced a laugh, but I really did like her nod to parental sanity. She also pointed out that if I thought it would be hard to get Stella patching again after the break, I could just continue our two-hour-a-day regimen and we’ll reassess next time. On the surface, these statements seemed 100% delightful. But then they sunk in and I saw their underbelly: a mentality that embraces years and years of unpleasant patching as the sole treatment for amblyopia.

When it comes to the actual examining and measuring, I get the sense that this doctor is very skilled. Efficient, calm, and precise. She asked Stella if she’d be willing to sit out in the waiting room and teach other kids how to cooperate during an exam. I was already very proud of Stella and this comment made me smile. Stella for the win!

At the very end of this saga of an appointment, I didn’t quite follow the reasoning about the prescription. I hadn’t eaten anything. My blood sugar was low while vigilance remained high. Maybe I shouldn’t feel such an impulse to completely understand all the makings of the figures in that glasses prescription grid. Maybe I shouldn’t be noting every comment everyone makes as they do the exams and comparing and slicing and dicing them. Like when the student guy took a turn looking in Stella’s eyes and the doctor told him he’d notice a “duller” something or other, and that was just a downer to hear. Maybe I should just trust that this is the right prescription and no mistakes have been made, no key bits of information overlooked. But dude! It’s not exactly smooth sailing over there! And when it came to the prescription I had a pretty sizable though fleeting misunderstanding.

After measuring, she said she was going to decrease the prescription to allow Stella’s eyes to do some of their own accommodation, which might help us reduce the prescription as she gets older. Surprised, I was all, “Wow, that’s GREAT!” Then she handed me the new prescription, and I stuttered, sadly, “B-but, this looks higher than her c-current prescription.” And I saw in her eyes recognition of my misinterpretation. She paused to look in Stella’s file to find her previous prescription and said, “Ah, yes, this does represent an increase in her prescription from last April.” Then she explained that she was reducing the prescription as measured TODAY. It makes total sense. But when you present a new prescription to a patient, or her mom, shouldn’t you talk about any change and reassure about or explain that change at least somewhat? My confidence wasn’t exactly 1,000% by then based on the other slip-ups, so I started thinking about the doctor’s and orthoptist’s statements that Stella’s eyes are perfectly aligned in her glasses. If they’re aligned, why does she need new glasses? Isn’t that the point of the glasses? Honestly, by then I’d contradicted, questioned, and corrected the doctor a few times already and didn’t want to keep pushing. It was just getting awkward so I let my anxiety start to take over a bit, and I backed off. But now I wish I’d just said it. I wish I’d expressed that lingering doubt, and resolved the issue for my own benefit. For some reason I protected the doctor from further scrutiny. Why I feel the need to shield surgeons from any cutting remarks is a mystery! (Sorry.) Mainly I protected myself from further cringing–I still judge myself to be overly worried at times, and overbearing. I don’t want to create an antagonistic mood wherein people are more likely to make mistakes or be unreceptive to my questions. But I’m Stella’s advocate! It’s up to me to ask all the questions. It’s my job to make sure she gets the best care. This shouldn’t feel like a heavy, overly complicated task, should it?

We had a vision therapy appointment at 5pm that same day. Yep. Our therapist and I thought her eyes would be back to normal by then. Nope! They were still quite dilated, and I had to wake her up from her nap in order to get there on time. Which, duh, is a recipe for sour Tantrum Soup! I expected a tough session and said so to Bethanie, Stella’s vision therapist. I was so wrong. Stella stepped up and knocked it out of the park. We enjoyed tasty Giddy Cooperation Quiche, or something. Bethanie got another heaping helping of Stella’s growing adaptability, sociability and even her hilarious fake evil laughter during the “red light game” in which Stella and Bethanie had great fun together. A delight to behold. We were on top of the world, I tell you! We were invincible! Remember when a regular session of vision therapy resulted in angry desk-clearing? When the yoked prism goggles created an instant bad mood? No more. She wore them agreeably, base-up and base-down, on a balance beam, popping bubbles, reading the letters corresponding with a little moving light, calling out the color of the arrows on a chart while bouncing on a trampoline, and on and on. She did some impromptu victory laps. She said, “I did it!” several times, with glee. How far we’ve come.

In a perfect world, the ophthalmologist’s exam would’ve shown 20/20 (or 20/30) acuity in both of Stella’s eyes. But it’s not quite so simple. The greater context includes minimized toe-walking, dramatically improved peripheral vision, and clearly enhanced stereoscopy. To me, the results of our sojourn with ophthalmology were affirming, like all of the improvements I’ve seen in Stella’s vision throughout the last nine months.

To conclude, a few things I’m looking forward to: Dr. T’s upcoming optometry evaluation and input. Much needed new glasses for Stella as purple tie-dye duct tape is now holding her specs together. A patch-free summer with my vision therapy champion of the world (toddler weight division).

Posted in Appointments, Milestones, Stella's eyes, The Patch, toddler, vision therapy | Tagged , , , , , , , | 12 Comments

Prom bomb, un-edited because I’m not sure I can survive re-reading it

Recently, after complaining on Facebook about how a prom-related copywriting project evoked cringe-inducing memories, a friend from across the globe presented something of a dare. He said that if I agreed to write about my prom horror story, he’d share his as well. Kind of like “I’ll show you mine if you show me yours,” but more revealing. Because actual nudity doesn’t compare to this sort of naked emotional ridiculousness. Of course I accepted the dare, then regretted it, much like 90% of my middle and high school experiences.

The 10% I don’t regret include hilarity with two of my best friends/fellow comics from that time: Alison and Tony. We were obsessed with “Ace Ventura, Pet Detective” and when I say we watched it 300 times, that’s a conservative estimate. I still know the whole film by heart and quote it often, if only in my head. I usually can’t find my keys or phone, for example. And in the midst of one gut-wrenching search for my stupid-ass phone, the phone I’d held in my hands earlier that same morning, intolerable frustration almost swallowed me whole. But Ace was there to rescue me. And so instead of punching myself in the face, I posted my mental dialogue on Facebook:

“Couldn’t find my phone and found myself quoting Ace Ventura. ‘SO FAR… no signs of aquatic life… but I’m going to find it. If I have to tear this universe another black hole, I’m going to find it. Because I’ve… GOT TO, MISTER!’ Sadly dorky, ay? Still love that movie.”

People (including Alison) replied with other quotes and all I could do was hit the “Like” button but I’d have hugged them if I could.

The other component I don’t regret is my basketball career. I also played softball for about a million years, mainly because my mom played softball so it felt like I was carrying the torch. For unknown reasons, I ran cross country, after quitting soccer despite a call from the varsity soccer coach asking me to reconsider, a gesture I blew off so arrogantly that I still wince when I think about it. Despite being a pitcher, albeit who lacked speed and subsisted mainly on a super slow change-up that blew batters’ minds in that no pitch could possibly be that slow and lame, and tying for first place in my inaugural cross country race against snobby Wellesley thanks to a potent mixture of anxiety and adrenaline, I didn’t give a shit about either sport. And in many ways it absolutely showed. Presumably by default, I was captain of three sports and I still feel guilty about that. Because I only had eyes for basketball. The rest of my athletic career amounted to half-assing, filling time, and fulfilling perceived obligations and so-called potential. BORING!

Come to think of it, my entire high school experience amounted to half-assing it. All of it. Sure, I earned straight A’s my freshman year, but by senior year, I had some C’s and a big fat D in the mix. Most of the homework and 99% of the reading I skipped completely. And trust me, this all relates to prom. I’m getting there!

I was unsettled.

It’s the best word I can find to describe myself at the time. Never in the moment. Never truly engaged–except when watching or quoting Ace Ventura because that shit was HILARIOUS. Okay and there were other times with those two aforementioned friends when I was fully alive and engaged. Other times I was an asshole, and less often friends and acquaintances were assholes to me, but some of that unkindness is par for the high school course and part of growing the hell up, yeah? What’s not standard or expected is the debilitating fear and anxiety I carried around with me. The level of aversion I had for any remotely meaningful or potentially real interaction. I was a turtle who recoiled into her GAP-swaddled shell at the threat of any positive or negative emotional engagement. It was all terrifying to me. But I could hit three-pointers, so at least that was something. Basketball kept me going and better yet, it was something I could practice obsessively on my own, without dealing with any pesky people or feelings. Without my jump shot, and those laugh-out-loud good times with Alison and Tony, I may not have made it through. In short, I was a mess.

When I was writing that prom copy I mentioned, I googled around for prom content online to get into the zone. I found some clips for teen movies about prom romance. What always boggled my mind about such films, even back when I was their target, was the ability for the kids to handle their emotions, whether sadness and embarrassment, or happiness and connection. I thought, “Like, how do they just sit there feeling sad? How are they so calm?” Or, “WHAT?! They actually pursued and then kissed the person they actually LIKED? Whoa. WAAAAAAY too intense for me to fathom! Maybe the Celtics are on. Ah, that’s better.”

So my prom experiences were lame in just about every conceivable way. I attended both my junior and senior proms and in essence, I had a date for neither. I may have superficially lamented this fact, but not having a real date was nice and safe and therefore “totally cool” (did we actually used to say stuff like that non-ironically?).

You know what? I’m just going to combine both proms into one. They were fundamentally similar. I didn’t mature at all from one year to the next. In fact, I am still probably six years behind, maturity-wise, so for simplicity’s sake, let’s just say it was one giant prom fail. Then again, when you consider that I was only 11 and 12 years old mentally and emotionally, it’s not as bad. I got my period at the same age as girls in the 1800’s, around the age when a typical modern-day girl gets her driver’s license. I was playing with the neighborhood boys (whom I babysat and would constantly come to our home’s back door and ask my mom, in unison, “Can the girls come out?”) until age 15 or so, long after my younger sisters had abandoned games like war and laser tag. Okay, that doesn’t help at all. Next!

Let’s start this stroll down prom memory lane with a note about the preparations: Tanning, dress shopping, and then, finally, the day-of hairstyling. All were fucking disasters. My skin doesn’t belong anywhere south of Scotland, so it sure as hell didn’t take kindly to fake baking on an accelerated, procrastination-fueled timeline. It’s sad because part of me really believed I could become perfectly bronzed in a single week. But, I persevered and managed to achieve a lush shade of pink in time for the big night.

Dress shopping was a joke. I didn’t have breasts then, and barely do now, so it was like a ten-year-old playing dress-up in a pageant queen’s closet. I carefully chose dresses with wiring to support ample bosoms, and so basically wound up walking around with two empty boob tents on my chest. I simply was not capable of choosing a dress that actually fit me, because that would mean I accepted myself as I was. Hoo boy! I fooled no one. By now I’ve accepted my body. I truly have. But, and this is actually sad and not so hilarious, I absolutely hated it then. I could never stand in a natural, unselfconscious pose, for fear my flatness would be too obvious. This worsened my unsettled nature, my inability to connect authentically with people. It’s hard to really tune in to someone when half of your brain is devoted to devising the perfect positioning in order to conceal your entire upper torso. I absolutely loathed my lack of cleavage, the way I now loathe the idea of healthy women cutting up their bodies to fit loathsome ideals. If a movie was made of my high school experience, it would be “Loathing in Las Natick.” Or possibly, “Dazed, Confused, and Flat-Chested.” This particular insecurity was crippling and resulted in architecturally inappropriate prom dress choices.

The hair. Oh, the hair. The tale of my prom ‘do is wrought with suffering. I had major issues about my hair. At the time, it probably seemed pathological. But the hair-related agony makes sense to my current self, enlightened by time, therapy, old fashioned soul searching, my husband, childbirth, and motherhood. In that order. Hair was something I could control. In my unsettled mind, I’d lost the body lottery. It was crap. I lost big-time there, clearly. So, where could I win? Where did I have some control? My stick straight blond hair! I put an insane amount of pressure on my hair (and to a lesser degree my clothes, which I also obsessed over unhealthily–and pointlessly, as witnessed by many days of wearing all denim and my mom’s too-small shoes), which resulted in a problematic phenomenon of “trying too hard” and therefore “looking like an ass.” I’m going to gloss over the years involving volumes of aerosol hair spray that would make the EPA gasp and curling iron burns on my face. The years when I appeared to have run into a wall at high speed. I’m going to try to focus on my prom hair, but please note that this is just one example of many frightening anecdotes.

I didn’t do a trial run. I showed up a couple hours before the prom started, at what I considered to be a very fancy salon called Paradiso. The exotic name and soft, flattering lighting evoked Hollywood glamor. It was downright chic compared to the place I’d been going throughout childhood, for hair cuts preceded only by a wetting-down with an old spray bottle: Beautyrama. No, I’m not making that up. That was the actual name, and it was nestled within a tiny, ever-unpopular and depressing mall with horrible, un-Paradiso-like lighting, that also contained a Burlington Coat Factory and some looming storefront that I never could identify but based on appearances was an abandoned and looted Sears.

Anyway, I showed up to Paradiso with complete confidence that they would transform me into a better, more beautiful, curly-haired version of myself. A new “me” that could star in a predictable but irresistible teen movie as the awkward, overlooked and/or ridiculed girl whose last-minute makeover transforms her into every guy’s desire just in time for the dance. I left Paradiso with the mental stability of current-day Charlie Sheen.

I didn’t have any direction for the stylist. No opinion or vision. After some unsuccessful attempts to engage me, the woman went to town. And from the moment she picked up her comb, it was an out-of-body experience. Part of me–the part that clung to a sliver of hope that I was not in fact hideous and disfigured, if only my hair could be styled properly–died that late afternoon. With each twist of the curling iron, and each layer (and there were many) of Aqua Net, my fragile but previously marginally optimistic prom spirit crumbled. I walked out of there with what amounts to a large helmet-like crust of hair, an up-do that was sprayed securely into place after sagging and puffing out away from my head, with a single lonely curl on each side of my face–curls that were in no way different from the long side curls, or peyos, seen on male Chasidic Jews as dictated by the Torah. There were no loose, curly wisps common to Hollywood starlets. There were two tight-ass ringlets dangling from my hair spray helmet, framing my (by the time I reached my car) furious, beet-red face. Oh, but my bangs were straight and practically untouched, adding an odd nod to my everyday look (so as not to disorient people with my breathtaking Paradiso hair makeover?) while enhancing opportunities for prom-night ridicule. It was pure magic.

To my credit, I paid in silence, and didn’t unleash my rage until I was in my car. Not until I had driven half a block away did I scream at the top of my lungs while tearing the helmet apart ruthlessly. Like a caged animal. For several minutes I roared, leaving me hoarse. Some portions of the helmet remained intact. Others were left looking like vertical eruptions of frizz, the hair spray not allowing my hair to behave under the normal laws of physics.

Long story short, after a frantic phone call and deep breaths at home, I headed over to Beautyrama to eat crow and endure the spray bottle. I walked out with a style that was eerily similar, but less encrusted. It was awful, but less so, and I only messed with it for an hour before deeming it acceptable. My hopes crushed, I proceeded to don my boob tent dress and Payless shoes.

My date. In both cases, there was someone I should’ve gone with. Okay, I’ll seperate the two years of prom for a moment. The first year, I really liked and wanted to ask a sophomore kid who’d taken me waterskiing. But I actually liked and was very much attracted to him, and he’d told a friend that he’d say “yes” if I asked him, so that meant he was out of the question. I asked and attended prom with another sophomore guy, one that I pretty much regarded as a douchebag. Someone I didn’t even know. Someone who’d casually insulted my hair not long before. He was perfect! I spent very little time with him at the event, which is exactly what my unsettled self wanted. BUT I had a moment of prom-movie inspired weakness. Toward the end of the night, during the one slow dance we indulged in, I put my head on his shoulder. Because why not? It was prom! I didn’t want anything more than that moment with this douchebag. While my head rested there on that rented shoulderpad, I saw him look over to his recent ex-girlfriend, who was dancing with her older date as well, and shrug. They were both clearly horrified. I found out later that evening that they’d gotten back together right before prom. My humiliation in that moment was intense, but private. I don’t think I ever told anyone about it. After all, what did I expect? That kind of emotional distance and awkwardness is exactly what I sought out and secured for myself. Phew!

The following year, Tony asked me to go to the prom and I was an enormous bitch and flat-out turned down his earnest prom proposal. Even though I wanted to say, “Yes! That would be fun!” You see, we were close! In a “We’re such good friends and could very easily be more” kind of way. So, again, he was out of the question. Honestly, in addition to my many other regrets, I’m so sorry for how I treated Tony. I was a scared jerk, and he was very funny and impressively resilient. Functionally, in how the night played out, we were prom dates, anyway. Along with Alison and co., we hung out and laughed and danced together at some point. I actually had fun that year. Boob tents, unsettled mind, and all.

I don’t remember any post-prom activities except one, and I’m not sure whether it took place after my junior or senior prom: Shooting baskets at the gym alone. It’s the only place I felt really comfortable at that time. It sounds sad, but to my 12-year-old (mentally) self at the time, it was where I belonged.

So, there you go, Aadhaar. I’ve risen to your challenge! I did it in one shot. Yes, I lied about having started it earlier, just to reassure you because I felt bad. I’m sorry. But what you see here is the truth. Or at least the highlights of a fuller more boring truth. And if I survive this level of sharing, I will be an emotional rock. So thanks for that.

Posted in Commentary and whatnot | Tagged , | 6 Comments