Quotable?

I have the good fortune to be writing copy for a really delightful web-based company whose product is perfect for moms like me. Currently, I’m both collecting and writing inspirational quotes for their use. It’s fun work, and hilarious at times–in my brain. Especially when I write lines myself that are supposed to sound incredibly wise and timeless. Seriously though, this is right up my alley. My favorite proverb is Japanese and it’s been on my Facebook page and tucked away in an old post on this blog for a while: “Fall seven times, stand up eight.” Yes! That just fires me up! I have the complete pleasure of sifting through wisdom and getting paid for it. I get to let my highest self take over and come up with words that sing. But my mind can’t help but wander sometimes. Here are a few of my so-called “original quotes” that didn’t make the cut (i.e. they came to me and I mentally deleted them immediately, preventing them from being typed into my crudely formatted Word doc):

Get it done. Even if it’s a complete disaster.

Dinner cooked and not cleaned up is better than starving your family.

A snack in time saves a meltdown.

Go outside of yourself, and your home. It’s boring inside sometimes.

A tantrum is just a toddler’s way of teaching you about adversity, and the value of sanity.

You don’t know your worth of until a two-year-old hurls their disgustingly expensive glasses at you.

Be one with the mess. A dirty dish never killed anyone. Except maybe due to food poisoning in the instance that it was used again without washing, which of course you would never even think of doing.

Possiblity lurks in every corner. You either seek it out, or miss out. Or, while looking for it you get sidetracked and spend an hour using the handheld vac to eradicate dust bunnies, hunched over like a maniac never pausing to realize that you could have done it in five minutes using the “real” vacuum.

Time is but an illusion. Unless you’re the mother of a toddler, in which case it’s both non-existent and precious beyond words.

Farsighted toddlers like to keep their mothers near.

A missed nap is but a drop in the ocean of frustration.

The all-encompassing love of a child squeezes the heart and the brain. Take breaks.

Two points of view. One big push forward.

Big girl

Big girl bed! New purple glasses! Happy Stella.

In the first chapter of John Gottman’s wonderful book, Raising an Emotionally Intelligent Child, my current daily life is illuminated: “Behavioral psychologists have observed that preschoolers typically demand that their caretakers deal with some kind of need or desire at an average rate of three times a minute.” Stella is officially two and a half, 38 inches tall and sleeping in a big girl bed. She has more demands and opinions and upset and glee now than even just six months ago. She’s in some sort of developmental transition period. At times I’m awed and at others, I’m borderline insane. This is a fun but challenging age requiring tons of patience. A tricky age indeed for vision therapy, which requires focus, patience and the tabling of those smaller demands in order to accomplish something she doesn’t fully understand. (I do think she gets it partially, though.)

Stella recently had two evaluations. One with her pediatric ophthalmologist and the other with her developmental optometrist, within about a week of each other. The conclusions by both were encouraging, overall, but quite different. Our intention was to use the results to gauge how vision therapy was going, especially since Stella’s been resisting more. We wanted to figure out whether we should take a break and come back to vision therapy in six or so months, or carry on.

The ophthalmologist determined that Stella’s amblyopic eye is 20/40 but bordering on 20/30. And that her other eye is 20/30 bordering on 20/20. They go with the lowest number, I suppose, in order to crush parents’ spirits–I mean, in order to be conservative and not overestimate visual abilities. (It does make sense.) She very cheerfully told us we could reduce patching from three to four hours to just two hours. I have not told her that we’ve been patching differently than she prescribed. Instead of patching three to four hours a day with an adhesive patch placed directly on Stella’s skin for complete occlusion, we’ve been patching two to three hours a day with Magic Tape over Stella’s glasses lens, and doing vision therapy, which they will hopefully remain ignorant of because I don’t want it to taint their assessment or treatment of me and Stella. It was reassuring to hear her, someone who said Stella may have to patch for a few years, say that patching was effective and that we could reduce it. At the end of the appointment, I asked her, “So, is there anything else we can do for Stella?” She hesitated for a split second and then said, ‘No. It doesn’t matter what they do while patched.’ And that was that.

Hold onto your hats. In our evaluation with the developmental optometrist, Stella showed 20/20 vision in both eyes. This is huge, and I haven’t really come to fully believe it yet–though I saw it with my own 20/20 eyes. It took Stella a tad longer to see the targets with her amblyopic eye, but not too much longer. She could see the chart’s 20/20 line far away and up close, with both eyes. Sometimes answering instantly, when the smiling doctor playfully sang “quickly quickly!” Why there is a discrepancy in performance between the two appointments, I’m not sure. The testing procedures and atmospheres were certainly different. Mainly, more time was taken at the optometrist, with more nuanced testing done.

Randot Stereo Test

Randot Stereo Test

While I was stunned when Stella identified the teeny tiny symbols (bird, cake, etc.) indicative of 20/20 acuity, I was just as thrilled when, during that same optometrist appointment, Stella was able to see three 3D circle images  in the top left section of the chart (the Randot Stereo Test at left). Last time, she didn’t get any of those and saw only one thing pop out at her–the 3D character in line A in the bottom portion of that left panel. Alas, she still only got one in that section. I suspect that her attention span complicates this, and the doctor did acknowledge that it’s possible Stella can see more than she is able to indicate. But perhaps not. As I’m known to say these days, after over-analyzing some Stella-related concern to the point of boring even myself, “Who the hell knows!?” I’m just grateful for the improvement.

The ophthalmologist’s 3D testing was much faster and simpler. Instead of a multi-layered chart with different lines measuring different degrees of stereoscopy, they used a single large image of a fly–the Stereo Fly test, which I learned about on Strabby (more on Sally and her blog in a minute). Stella seemed to try to pet the insect after some coaxing. They nodded approvingly. I wondered what Stella saw and thought and wished she could describe it to me.

I was crestfallen to hear, at the ophthalmologist’s office, that they saw no improvement in Stella’s vision. Yet they seemed incredibly happy with how she was doing. They noted that the acuity in Stella’s amblyopic eye is and has always been above average for her age. Her other eye’s acuity (with glasses, of course) is way above average. They said her vision was developing very nicely.

Both doctors concur that the eye crossing (esotropia), so far at least, has been eliminated by the glasses. Perhaps with help from vision therapy, as I believe the eyes did cross in exam with glasses earlier on in this journey. I haven’t seen Stella’s eyes cross in such a long time as they are aligned when she wears her glasses, which is all the time, excepting bedtime, bathtime and her weekly half hour of swimming (prescription goggles may be in her future) and occasional fits of toddler rage. Stella’s eyes did not cross in either of the recent exams, even after the typical attempts to break alignment. This is huge, often overlooked by myself and Cody, and worth celebrating with lots of wine. I have so many pictures from her babyhood in which I can now immediately detect the not-so-obvious difference in her eyes’ positioning. We also have photos and videos from her ER visit at 18 months of age, during which both eyes were severely crossed (seemingly out of nowhere, though again, we realize now that they’d been slightly misaligned, frequently but thankfully just “intermittently,” her whole life). We keep the ER images as a reminder of why we’re doing all of this. It’s very difficult for me and Cody to view them, because she looked so vulnerable and clearly couldn’t see anything except foggy blurs. But they’re powerful appreciation boosters, and quickly give me perspective when I’m stressing about Stella’s refusal to go to bed without getting up ten times to talk about Papa Bear’s porridge or flamingos or other topics meant to engage me and delay the train to Snoozetown by a good three hours. (And breathe!)

The bottom line is that her eyes–their refractive power and degree of slight astigmatism and as a result, their acuity–are different. It’s refreshingly simple. The two doctors agree on this. It’s the discrepancy between the two eyes that has led Stella down the path to amblyopia.

Both doctors, seeing Stella through their respective lenses, were very positive. Through the course of both appointments, I was amazed, disappointed, encouraged and informed on several levels. I walked away from these evaluations with some real reassurance, but also some points to ponder endlessly and inanely. Stella’s degree of stereopsis (3D vision) has improved wonderfully in just two months, but further improvement is needed. I wish I’d questioned the ophthalmologist more on their take on this. Do they think Stella has normal 3D vision because she tried to pet the fly (I think we called it a bee)? Are they settling by assuming, “at least she has some 3D vision,” or do they genuinely think she has age-appropriate stereoscopy? I wondered aloud to the developmental optometrist: When Stella has moments of experiencing 3D vision, does it freak her out and lead her to suppress her amblyopic eye? Our optometrist said that yes, this can happen. Which may explain why Stella frequently says, “Mommy I need a break!” But, the doctor explained, if I’m around, serving as Stella’s anchor and emotional safety net, it shouldn’t be an issue. For that reason and many others, I am so happy that I get to be with Stella during this time in her life. I get to be there to eat the pretend lunch she prepared and soothe her when her vision acts up (though I never really know for sure) and observe all the little things that indicate what she’s seeing and experiencing–which prove helpful to this process but might otherwise go unnoticed. I see how her peripheral vision is really good now. I see that puzzles are a breeze. I see her push her left lens closer to her eye. I hear her say things about her eyes that give me hope. I’m fortunate to have this time. Happy to take all (okay most) of it in.

Children's Eye Chart

These are the symbols Stella identifies.

These exams were more than just “let’s see how she’s doing” meetings. This latest evaluation, particularly with the developmental optometrist, was a crossroads. I was nervous. I feared Stella would feel my heart pounding as she sat on my lap in the big black exam throne. We came to this point of decision-making because it’s not only been increasingly tough to get cooperation from Stella for vision therapy at home, but also in the office at times. Some exercises are much more well received than others both at home and in the office. Some appointments are simply better than others and I still believe that she gets a lot out of all of them. At home, it can take over an hour to get 20 minutes of therapy done. (I find that time hard to fit in comfortably–but I suspect other, more normal and organizationally proficient moms might do a better job of this so I really don’t want to deter other families who have a child of two and a half who might greatly benefit from vision therapy.) We’ve been told to do the exercises earlier in the day, when Stella is less tired and there is more natural light, because we tended to shove them in at the end of the day. After a glass of wine, I’m a much more effective and relaxed vision therapist. But I am slowly getting better at overcoming my dread of possible screaming and infinite dawdling and learning to break therapy up into small chunks. A quick matching game (with the patch) before lunch. Sticking skewers intro straws while patched and eating dessert. That sort of thing. Did I mention that I’m not very organized? If The Container Store had a blacklist, I’d be on it. Though I do have a big green plastic box in which I dump all of our vision therapy games and tools, which is a true Martha Stewart moment by my standards.

In the end, due to her gains in 3D vision and acuity as witnessed in the optometrist’s office, and even the ophthalmologist’s thumbs up assessment of Stella’s visual status, we’ve decided to continue vision therapy for another few weeks, at least. With an emphasis on use of the yoked prism goggles, which merit an entire post (coming soon), and more physical exercises that engage the vestibular system and body as they relate to and inform vision, from what I gather, helping Stella’s brain devise a more accurate map of space and her place in it. Stella enjoys those activities more, anyway. Bouncing, rolling, running? She’s in! Donning red/green glasses and slowly scanning the kitchen floor for matches, MFBF style? She’s so done with that particular game. She used to get 15 matches in one shot, now I’m lucky to get five reluctant matches worth of cooperation and sometimes she refuses completely and we both end up in tears. So I have to roll with it and be more flexible than ever. Putting those cards on the wall over the couch and letting her bounce around while searching does help make it more novel and fun. But I’m not sure that exercise is worth it anymore. Stella’s vision therapist agrees and is going to move us along to some new MFBF exercises to build upon this work and mix things up. We really like her–she’s had letters thrown at her, cards torn out of her hands, and shrill, blood-curdling screams shatter her eardrums, yet she keeps a cool head at all times. Me? Not so much. I sweat during those appointments to the degree where I stash deodorant in the diaper bag.

So we are at the beginning of a big vision therapy push. Can I help Stella get to the next level? I sure hope so. We’re going to do our best. We’re seeing progress and it would kill me to break now especially with the promise of yoked prism goggles just starting to be a staple in her vision therapy buffet. If a break is needed after that, fine. But if so, we’ll be back at vision therapy as soon as Stella is ready. Do kids become more cooperative at three? Good lord I hope so because caring for a two and a half year old is like playing with fire. I’ll tell you what, though. I appreciate Stella’s strong will (the screaming? less so) and don’t blame her one bit for resisting patching and exercises, the purpose of which she doesn’t comprehend. Between that and patching, we ask a lot of her. She does amazingly well for her age, and knows her numbers, shapes, and letters better than many kids twice as old, which has helped make a lot of exercises possible. As they say where I’m from, she’s wicked smaht. Don’t even get me stahted!

It’s been twenty seconds since I’ve heard, “Mommy? MOMMY!?” So another Stella need will arise now and I must go. But first a shout-out to our comrade Strabby, who recently had a huge vision therapy breakthrough using a lot of the same therapeutic tools that Stella employs. It is so fascinating to hear her account of her first glimpses of “3D-ish” vision–I bet that’s what Stella was experiencing when she said, “I can see with both eyes!” Strabby gives me a better idea of what Stella might be seeing and going through, which helps keep me motivated. Thank you and congratulations, Strabby Sally. Keep it up. Lead the way to 3D-ville, baby! We’re right behind you!

An inevitable dip in the roller-coaster ride

When Stella gets really upset about anything at all, her immediate, go-to move is to tear off her adorable purple glasses with one hand (OUCH!) and throw them, with the force of every ounce of rage she’s got. Though to be fair, in the rare minutes when they are off, she will sometimes ask for them. And objectively speaking? Her specs simply handy during tantrums, as they happen to be the closest toss-able item. My point, I suppose, is that sometimes, despite my obsession with her eyes, it’s not all about vision. Not every fit or glasses-tossing, or vision therapy refusal has to do with her visual system! She’s a toddler, for crying out loud. Today, she’s getting a cold–her nose is running. She could be teething, as she’s complained about her mouth hurting and chewed through several pacifiers (disclaimer: we plan to get rid of them very soon!), too. Any of these things could explain her aversive behavior lately. Mind-boggling mysteries of the toddler mind abound, and I’ll never solve them all. But a pesky fact remains: Vision therapy has gotten tougher. Patching, too. I’m stressed out.

I fully believe in vision therapy, but as of this moment, I’m not 100% sure of our current ability to keep up the regimen with proper diligence. I always wonder if we’re doing enough. Some days–like, oh, TODAY–Stella resists patching and “eye games” like it’s a form of medieval torture. Of course I don’t blame her. If she doesn’t feel like being still or finding matches or attempting whatever task I’m presenting (though I always try to provide two options so she can CHOOSE), why wouldn’t she be annoyed? She doesn’t truly understand why we’re doing all of these exercises every day. It must be confusing and frustrating when I insist that she stick skewers into straws or put on awkwardly large red/green glasses (okay, I’ve taken out the lenses and taped them to her specs instead–am I a rebel or what?) and find matching shapes on weird-though-now-way-too-familiar cards, rather then go to the park, have a tea party, or paint.

To be clear, despite the bumps in the road, I have most often felt certain of Stella’s continued visual improvement. Like when she says, as I reported recently, “I can see with BOTH eyes, mommy!” Or when she does the balance beam, a two-feet high, 4-inch wide one at the playground, all by herself. Or when, early on in her vision therapy journey, she stopped during a walk we’d taken a million times, to feel the rocks that stick out of the concrete beneath our feet–something she’d never done before. We know that she made great strides during her first three months of vision therapy. But we’re well into our second three-month segment and it’s becoming more of a battle. I worry that her increasing lack of cooperation (corresponding with my increasing and decidedly unhelpful frustration) is a worrisome reflection of visual difficulty that should be resolved by now, and/or that this behavior may make real recovery impossible, at least in the short-term.

I’m not giving up. I’m just a bit worn down. The stakes are high. We invest a lot into Stella’s therapy, financially, emotionally and time-wise. The thing is, the stakes don’t need to be this high. They shouldn’t be this high. Vision therapy is supported by decades of evidence and research, and should be more widely embraced. This would take a huge burden off of families like ours, and improve outcomes for children.

I have a lot of anger about health care in this country. By the time Stella’s course of vision therapy is over, we’ll have spent somewhere around $20,000 on much-needed care for sweet Stella that was not covered by insurance. The stress and pressure created by our system does not help Stella, or our family as a whole, thrive. We don’t yet own a house. Our one car is a dented 2003 Ford Focus (tan and blah and not me at all but it works!). I still consider us lucky, but we are definitely and uncomfortably stretched. Outrage takes over when I think about Stella and other children, who by no fault of their own need extra help in order to survive and flourish. What if we couldn’t have used our nest egg to fund $1,000 in hypoallergenic formula each month to help Stella survive as a baby? Maybe they would’ve stepped in when she was seriously ill, having been forced to ingest formula (or breast milk) that was literally killing her. A letter from her pediatrician insisting that Elecare was a medical necessity did nothing. Formula was conveniently “excluded” under our plan. (It’s so abhorrent to me that I’m having a hard time writing about it without becoming extremely emotional.) Now, with vision therapy, not only do we lack support from the health care system but also most doctors. Maybe they’d help us out when Stella failed to learn to read? When she started rejecting school altogether? It’s the signs of progress and Stella’s happy demonstrations of new abilities that keep me going. They’re worth every penny and more! It’s her natural, toddler-appropriate resistance, combined with incredible pressure to see results due to exorbitant costs, that make times like this so hard. My reactions to her lack of cooperation may be overblown, due to the fear created by the situation. Maybe I push her too hard at times, out of desperation, making it all worse.

This is all really honest and dark. I’ll emphasize that on daily basis, we’re doing okay. I really, really try to make the exercises more fun and rewarding. In a forthcoming blog post, I’ll share the little successes I’ve had in that area, and explain the adaptations that have helped with gaining vision therapy cooperation with a two-year-old! No small feat. I totally enjoy devising solutions that make her exercises palatable. When it works and she has fun while doing highly beneficial therapy, I’m incredibly fulfilled and uplifted. It may sound completely insane but the idea of actually BECOMING a vision therapist has crossed my mind. So that I  can work with her long-term, at her pace, at a slightly older age when she is perhaps more able to focus her attention, without driving us into bankruptcy. I’m only half kidding when I say that a vision therapy education probably wouldn’t cost too much more than Stella’s vision therapy itself.

This morning, Stella really resisted patching. Which is what sparked this wave of doubt and prompted me to analyze why I feel so much pressure… why the stress is mounting. But it may have nothing to do with her vision. And my worried questions about Stella’s vision can be addressed to some degree during her weekly in-office sessions, which is immensely helpful. In addition, I’m trying to get help with her at-home therapy, stocking up on chocolate chips (the ultimate, last-ditch incentive for cooperation) and hanging on until her next progress evaluation next month, hoping to get the reassurance we need. Ideally through some sort of computer-based testing rather than reliance on Stella’s ability to call out what she sees during testing. Because LORD help us if she’s teething or tired.

To feel like we’re standing on semi-solid ground–that would be a gift. I know we’ll get there. I do. In the meantime, I hope that in some small way, perhaps just by sharing our story or calling out the lack of support, we can make it easier for those that follow.

 

Stella insists she can see with BOTH eyes

Yesterday was sunny and crisp. A Golden Delicious apple of a day. Okay, a frozen one. I’d recently read about how incredibly important and beneficial outdoor time is to kids’ eyesight, and was determined to whisk Stella off to the neighborhood park immediately after her nap. Stella woke up, and after wasting about 30 to 45 minutes doing absolutely nothing in particular, I removed the eye patch from her glasses and we headed out on foot.

Half a block into our walk, which was really more of a run, Stella seemed to have a revelation. I saw it before she said a word. She suddenly paused, looked around, smiled, and excitedly exclaimed, “I can see with BOTH eyes!” She went on to make this declaration at least twenty times. “Mommy! I can see with BOTH eyes! I can see the leaves. I can see the berries. I can see with BOTH eyes! Mommy! I see with BOTH EYES!” While she was having a great time, seeing with BOTH eyes, my mind raced to interpret this statement in relation to her amblyopia and strabismus and vision therapy. I tried not to let my hopes soar, and simply focused on the happiness of the moment. She was thrilled. I was spellbound and silent, mostly. I did say, “Yes, you CAN! You can see with BOTH eyes.”

What did Stella mean, exactly? It could be clear, simple, and run-of-the-mill. Even with her amblyopia, Stella does see with both eyes–with one more than the other, but still. I see with both eyes, as do most people, obviously. Was she simply making a smart, toddler-esque realization about the world and how it works? Or was a shift taking place in her vision? The whole point of our current vision therapy and patching efforts is to help her see with BOTH eyes, equally. Out of nowhere, she was expressing the essence of everything.

I mentioned the incident to Stella’s vision therapist today, and naturally, she found it very interesting. We both acknowledged that because Stella is two, it’s hard to know why she was saying that she can see with both eyes. But yes. Be still my beating heart! It could be that her eyes are working together better. Binocular fusion and increased stereoscopy (3D vision) could certainly create such an excited and interested reaction. On the other hand, it’s also possible that she’s seeing double–which isn’t necessarily bad. Sometimes kids in vision therapy see double here and there as their brains figure out the path to binocular fusion. But I don’t think that’s it, because she had no trouble grabbing small berries or pebbles, no difficulty running fearlessly up and down the small but steep slope that runs parallel to the sidewalk. She made eye contact with me frequently and purposefully.

When Stella’s eyes crossed severely on that day last April, the day that (thankfully) set us on the path to glasses and patching and vision therapy, she couldn’t see or do much of anything. Eye contact was impossible. She could walk, but not as steadily, and if told to walk to mommy, she’d miss me completely and sail by to my left,  aiming at one of the two inaccurate, fuzzy mommy images that she saw. Her arms flailed in front of her, grasping. She wasn’t scared. She seemed dazed and thoroughly amused, playing around in the blurry void. Nothing of this sort happened yesterday. There was a general feeling of clarity, in the way she spoke and behaved. Regardless of what Stella was actually seeing and experiencing, I view this small but striking incident as positive development. Even if her vision was not being transformed in that moment, it was still wonderful to hear and behold.

Due to a rough night of broken sleep, today’s vision therapy session was challenging. Stella was tired, and her fuse was short. But we did some solid work, and learned some new exercises. During the long-ish drive home, again I noticed something out of the ordinary. I looked back several times to see Stella positively beaming. Smiling such a sweet, powerful grin while gazing at something specific–one time it was the cherries hanging from the rear-view mirror. Stella smiles a lot, but this was different. Focused, for no obvious reason. We were listening to NPR, so I know music wasn’t the spark for her pronounced delight. I think it was her eyes again. Maybe she was seeing double and found it entertaining. Or perhaps she was seeing the world in full depth and dimension. How beautiful that would be.

 

 

 

But terror takes the sound before you make it

Yesterday afternoon, during Stella’s nap, I was working here at the computer with sunshine pouring in from the window when thought I detected the slightest noise behind me. I swiveled in my chair and was jolted by the sight of Stella, standing just a couple feet away. “Thriller” would’ve been an apt soundtrack for that moment. She scared the living crap out of me–but thankfully I only gasped and didn’t scream. Stunned speechless by her stealth, I suppose. Come to think of it, her disheveled hair, squinting eyes not yet accustomed to light, and baggy sleep sack did give her a ghoulish look. She got out twice more before I finally gave up on that particular nap time and accepted our weekend fate: Shopping for a big girl bed. And perhaps a small bell to be sewn onto her pajamas.

UW pre-optometry students to the rescue!

Stella, nailing "The Treat Game" with her assistant, named Baby.

Stella, nailing "The Treat Game" with her assistant, named Baby.

Stella knows how to use “WHAT!?” for comedic effect. At PCC, the natural grocery store we hit up to three times a day, there are fun sculptures outside. In reference to one of them she exclaimed, “A dog on a bike–WHAAAT!?” Just a sliver of a pause inserted. She went ahead and tacked on the prolonged “WHAT!?” in a flat yet exaggerated way, the timing and tone appropriate for SNL or In Living Color. Clearly, she’s a comedic genius bound for stand-up stardom.

As I’ve hinted at before, here and at Little Four Eyes, accomplishing our allotted daily vision therapy is a challenge. A grind. More for me than for Stella. In the way that getting up at 5 AM is challenging for a wine-guzzling nightowl. (I swear that’s not me. Usually.) I’m not the most organizationally proficient mom you’ve ever met–unlike my cousin who organized, within an inch of its life, the kitchen drawer that holds her young daughter’s dishes and utensils. To me it was an awe-inspiring thing of unattainable beauty. Honestly, I’m just happy to have identified a drawer into which I can toss that stuff from across the room, since it’s usually left open. When it comes to what needs doing in daily life, I get it done, but piles, toe-stubbing, sweating, and flat-out sprinting are involved. My creativity helps compensate, though. It kind of makes up for the disarray. I write fabulous copy for a range of clients in order to pay for Stella’s vision therapy and other stuff, and enjoy it, and I easily conjure up ways of executing or adapting vision therapy so that it’s somewhat innovative and actually fun for my two-year-old, who is quite young to be doing vision therapy in the first place. I find this type of work–the creative part of vision therapy, but not necessarily the execution–incredibly motivating and satisfying. Which is only natural, but somehow my difficulty seems much more severe than it should be. Of course, it’s not some horrible Sisyphean nightmare either. I believe in vision therapy. Though I struggle with getting it done, our daily work is incredibly valuable and effective, and Stella is resilient, adaptive and more cooperative than she gets credit for. Oh, and she’s creative, too! Using random objects like bulb syringes and blocks and ribbon, she’ll construct a tall, thin structure with a rounded top and say, “Look, mommy! I made the Space Needle!” And you know what, it really, really looks like the Space Needle. Clearly, she’s a brilliant engineer/designer bound for international renown.

Genius aside, when it comes to vision therapy, it really, really helps that she’s willing to step up to the very hardest challenges for a taste of Theo chocolate, made one neighborhood over from where we live, just down the block from Cody’s workplace and PCC. We often stop in for tastings, pretending to be tourists, though I’m not sure we’ve ever fooled anyone, even with our well-honed Boston accents, since we are loud, include a toddler wearing purple glasses, and head directly to the Hazelnut Crunch every time. In the context of “The Treat Game,” explained in my recent post at Little Four Eyes, she’s now grabbing two cards at at time so as to find matches twice as fast. Those red/green glasses just aren’t posing enough of a challenge anymore. Not when Theo chocolate is on the line. That’s my girl. But I know we can’t rely on chocolate. That’s simply the trick I keep up my sleeve. We have been in need of assistance for a while now.

As opposed to my mental lopsidedness, my sister is organized AND a creative problem solver. When I told her I was thinking of hiring someone to come here a couple times a week and help with our at-home vision therapy, she immediately suggested that I find an optometry student. I was all, “Brilliant!” Because wouldn’t you know it? We live right next to a giant university–WHAAT?!

So I got in touch with an officer in the pre-optometry club at the University of Washington and she kindly put out the word. I’ve received five applications from wonderful young minds! I’ll not only tell them everything I know about vision therapy and provide true insider information on to get Stella’s cooperation, but I’ll also throw in a pot of coffee and some sort of hourly rate. The peace of mind I’ll get, and the likely improvement in Stella’s outcome, will be worth it’s weight in Theo chocolate. Wait. Maybe I should pay my vision therapy assistant in chocolate bars? What can’t that stuff do?

And that’s not all! I’ve got a lead on a fantastic babysitter and zeroed in on a preschool that may just be ideal for Stella, due to its notably bigger focus on physical activity and fitness than any other preschool I’ve learned about. They have gymnasts and professional ballet dancers work with the little ones an hour a day–WHAAAT?!

Feels like we’re on the brink of being on a roll. We might even, after almost two and a half years, get some much-needed support–WHAAAT?!

Honestly, it’s not just Stella’s eyes that need the help. It’s me.

Takin’ care of strabismus

Gah! I can’t tell you how long I’ve been dying to use the above title for a blog post about Stella’s vision. Eons. For those of you who don’t know, “strabismus” (defined as “abnormal alignment of one or both eyes”) sounds a lot like “business” with a funny extra syllable in front. So there you go. Was going to save that tidbit up for my next big update, but it just couldn’t wait. I’m sure it’s been done before, because come on, it’s incredible, but I did technically think that up on my own without seeing it elsewhere. I refuse to google the phrase, so as to preserve the mine-ness. I’ve been copywriting for over a decade now in various capacities, yet somehow a good or perfectly goofy headline still makes my heart flutter. Yes, I just wrote a long paragraph about the headline of this post. And I wonder why readers aren’t flocking here en masse.

Oh right, I had a minor point. See the “Eyes” link above? Yeah, so I added a new vision-centric page to this blog so that interested people can find all the write-ups about Stella’s exotic-sounding visual conditions: amblyopia, anisometropia, accommodative esotropia, hyperopia, adorablyopia. Okay I made that last one up. And there may be others that I’ve forgotten and some that I’ve misspelled. But you get the picture. There’s a lot going on in Stella’s super cute eyeballs and we’re working really hard and I’ll be damned if no one else benefits from our saga. It’s like Star Wars, wherein amblyopia is the Death Star. Come to think of it, Darth Vader would make a kick-ass vision therapist. Tough-minded, thinks outside the box, and controls people with his mind? You’re hired!

Coming soon: I have some really exciting news to share from Stella’s recent vision therapy adventures. Like, crazy stuff that you might read about in science journals and marvel at the amazingness and plasticity of the human brain and how the hell did doctors and scientists figure out how to do all this stuff in the first place? This is boring to most people, probably. I’m a blogging failure in the general sense, but clearly I don’t care. I don’t need to reach a lot of people, though if this really is anything like Star Wars, I will. I just need to reach a few people in similar shoes, to help them a little bit, just because I can. If Stella’s story can benefit other kids, well, that’s what it’s all about! Sweet, sweet meaning.

To me and parents of kids whose brains are playing favorites with their eyes, this crap is more fascinating than you can ever imagine (I hope). Anyway, in addition to patching and whatnot, we’ve been doing more “advanced” therapeutic exercises. At the last appointment, it felt like we were really onto something. No, it’s not like Stella’s eyes are cured of any issues, but words like “dramatic” were tossed around. The impact of therapy could be much wider than I’d realized. I promise to write it up soon, because it’s really amazing and fascinating and my hopes rocketed up a notch or two, and my head will explode if I don’t write it all out.

You read this far? Wow. Thank you! To prove it, please leave a comment saying only, “Luke, I am your vision therapist.”

Knowing when to worry, and when not to

When I was an infant, I had to wear booties attached by a bar. The goal was to straighten out my legs. It worked, but my legs are a bit S-shaped to this day. They curve oddly at the knee, a quirk noticed by various coaches in middle and high school. But you know what? It’s subtle, and hasn’t been an issue. At all.

It just occurred to me that if Stella had needed a bit of leg straightening, even in this simple, relatively painless manner, I’d have been worried sick. Stomach tied in knots. All for nothing.

Stella’s foray with the feeding tube, and her eyeglasses and eye patch should be no different, really. I don’t mean to dismiss them, just to put them in perspective. I’ve let go of a lot of the anxiety surrounding them, but perhaps too much remains at times. It’s pointless, anyway. Counterproductive, even. She’s doing wonderfully.

There’s a huge lesson there. Hopefully it will sink in. This realization could help make 2011 a fabulous year.

P.S. Happy new year!

All I want for Christmas is an earlier bedtime

Night before last I slept like a baby. A newborn, actually. I was up until midnight, and wide-eyed from about 1:30 to 6 a.m. At which point I drifted into peaceful slumber for 90 minutes.

I went to bed late after Stella went to bed late. I slept from midnight until 1:30 a.m. Then I found out that my third nephew, my youngest sister’s first baby, had been born!  Three thousand miles away. He’s why I’d stayed up to begin with–I wanted to know about his grand entrance and all the key details as it happened! But frankly, it was taking forever. So I went to bed with the phone next my head and bolted awake at the sound of an incoming text. And I don’t care what cynical people say, it’s a miracle! It’s amazing! He wasn’t here and now he is, out in the world, a new person that is partly my sister and partly her husband. He and my sister, they’re just one of those “meant to be” couples. They’ve been together forever, and oddly and horrifyingly and at different times, they’ve both sustained life-threatening accidents and spinal injuries.  They are soul mates and survivors and now they are not only still here and okay, they have a son! He was eight pounds, one ounce, and super adorable. Like Stella, he took his time joining us out here. But why not? That’s kind of a big transition. Nothing to be rushed into. But don’t tell my sister I said that. She was pissed. All that aside, I just can’t believe that my littlest sister is now a mother. I’m not sure why it stands out so much out of an entire childhood together, but way back when, I did her gorgeous, shiny, long strawberry blond hair for the prom and made it frizzy and she was so kind to me about it, whereas I would’ve thrown a fit. She’s just great. She’s my baby sister. She’s a mom now. It’s crazy wonderful.

And that got my brain hopped up on all kinds of big thoughts, including how fleeting and wondrous all of this is and how I really need to do and be better and will I have another child and why do I live in Seattle instead of in Boston near my family and did I miss the holiday episode of Modern Family, all of which kept me awake until 5 a.m. That’s when I started to drift off, and that’s when Stella started screaming as if being attacked by vicious  zombie stuffed animals. So then I slammed my door open (it can be done, as I demonstrated), and rush into Stella’s room. Her “paci-binky” (yes, she came up with the term and I think hyphenation is warranted) had escaped from the crib and I could not find it a-n-y-w-h-e-r-e. So in a rage, I turned on the lights, and scoured the area muttering like a mad person. With no luck. So I went back into my chamber of insomnia and dug up an old pacifier and I have no idea why I knew that we still had it or furthermore, that it was in my underwear drawer. The unconcious is a funny thing when furious. So I gave it to her, thereby probably causing her to need braces and major an costly orthodontic intervention as that old pacifier is big and bulbous and probably for little babies with no teeth, and then stormed back in my room. Full of adrenaline and devoid of hope for any sleep whatsoever.

It was quiet for a while, as my body’s adrenaline surge died down, then I thought I heard a peep. Or two. Then there was animated talking about monsters and Santa and robots, and then the screaming. Again with the screaming! It’s totally contrived, but at times very convincing. In that moment, I decided to let her scream and scream because fake screaming shouldn’t “work” and cause me to come running only to have her immediately quiet and smile (because she’s been totally fine the whole time) and cheerfully say, “Papa bear likes porridge!” in an attempt to engage me in early morning playtime, but I was clearly allowing it to work and so here we were, but as of tonight I was having none of it anymore! You hear me?! None! Of! It!

I knew, before caving, that she’d tossed her lovies, blankets and pacibinky out of the crib (but not Dolly or zebra–they’ve somehow been granted amnesty). When rage again lifted me from my rumpled bed, I held it in. I robotically located and returned the crap to the crib, put the blankets her and left. Yes, two blankets, because she has to have the one Mimi made her and the one from when she was a little baby, plus her two lovies (the blandly but lovingly named blanky and pup pup) plus her new bespectacled dolly, named Dolly, and her zebra, of course, because how could you drift off to dreamland without a black and white striped animal next to your head? I was then able to sleep from about 6 a.m. until 7:30 a.m. All told, I’m pretty sure my sister, the one who’d birthed a baby early that morning, got more sleep than me. She will punch me in the face if she reads this. Well, she’ll want to, but like I said, she’s wonderful and will restrain herself.

Stella has, by and large, been a great sleeper. Which is good, because if she’d had both eating and sleeping troubles, I’d have been committed long ago. But in the last month or two, something has changed. I keep telling myself that earlier naps and an earlier bedtime are the key. That we will put Stella in her crib by 8 p.m. on the dot (at the latest!) every night, that I’ll make sure she’s down for her nap long before 1 p.m. (today it was 2:14). It’s just not happening. Today she slept until 9:15, making up for the previous night’s shenanigans, and so we’re off kilter again.

Clearly this calls for a Christmas miracle! Or a watch. You hear that, Santa?

 

 

A little blue

Lafont Tamtam in 220 blue

So long, old 220 blue

Stella’s glasses are blue, mostly. They are also broken. Actually, she has two pairs and both are destroyed. Again.

So we hauled our butts into the optical shop today. Apparently, after breaking them ten or so times, we’ve exhausted their supplier’s inventory of the Lafont Tamtam in 220 blue. To be clear, we used to get the original Tamtam in that hue, then switched to the identical Tamtam 2 in the same shade, a sturdier update. They’re both depleted and being phased out. So I could not order a replacement pair in what has become her signature color.

You know what’s funny? My sadness. My heart broke just a bit when the optician told me it was unavailable. This pang was a tad surprising. Not so long ago, I was teary about her need to wear glasses. Afraid they would obscure her beautiful face. Change her somehow. But at some point between then and now I fell in love those little blue frames. They’ve become a part of her, an essential component of her unique brand of cute. As cheesy as it sounds, those glasses truly hold a special place in my heart. And that explains why, even though they kept breaking, I couldn’t let go.

So I ordered them in blue 315 (which apparently means purple).

Here’s hoping that one of Stella’s New Year’s resolutions is to take better care of her glasses.

Lafont Tamtam in 315 blue

Welcome aboard, 315 "blue"