toddler

Fabulinks

Posted on by amberhj

I quickly wanted to share the results of our fun photo shoot with Dave Estep of EstepWorks. He’s a friend, a former co-worker, and an incredibly talented creative photographer here in Seattle. Can’t recommend him enough. He’s so laid back and kind, and his happy brand of creative genius seems effortless in the best possible way. Honestly, I was so confident in his abilities that we really did minimal prep. We didn’t make ourselves look fancy, with the exception of Cody’s button-up shirt.  I made sure we didn’t clash and I put on a bit more make-up than usual (the usual being none), but I didn’t shower, barely combed my hair, and my jacket was covered in lint. But that’s us. I knew Dave would present us, as we really are, in a beautiful light. And he did. We’ll treasure these photographs for a long, long time. Thanks so much, Dave.

Check us out on EstepWorks’ blog.

In unrelated but also fabulous news, Stella’s vision therapy progress evaluation (this morning’s eye exam, after three months of patching and vision therapy) took place this morning. I wrote about it over at Little Four Eyes. I’m proud of Stella and her hard-earned progress, while also steeling myself for more hard work. We need to get that left eye up to 20/20. We can do it.

I’m off to make some more modern paper ornaments before bed. They’re taking over our home, and I like it. Happy holidays!

The eyes don’t have it.

Posted on by amberhj

I’ve always been proud of my perfect vision. I’ve bragged about it openly, and came to appreciate it even more after Stella’s visual challenges revealed the complexity and wonder of human eyesight. “I’m so lucky and blessed,” I thought, darting my hawk eyes around to appreciate my crystal clear view of life. Turns out it’s not that simple. News flash: My vision is decidedly imperfect. And if I hadn’t been so blinded by pride, perhaps, I would’ve realized it a lot sooner. But the realization didn’t come until Stella’s in-office vision therapy session today.

If you saw one of my recent posts at Little Four Eyes, you know about Stella’s experience with the quoits vectogram and how it showed that she can see in 3D! Well, today we did the same exercise, with a twist, and it showed that while Stella has a decent amount of stereoscopy, she has a hard time recovering 3D vision if the therapist “breaks” the illusion and then brings the sheets back into place for stereoscopic viewing. It takes Stella a long time to re-fuse the images after briefly losing fusion. It’s something we can work on, and greatly improve, according to our vision therapist. I feel confident that Stella will overcome this issue, and it helps that Stella was a rock star during vision therapy today. Her hand-eye coordination has come so very far. You should have seen her throwing beanbags into squares, tracking fluffy bumblebees, honing in on moving light-up targets, and stringing beads onto wobbly string! A thing of beauty, I tell you! Because of her improvement in this area, I’m now to shift our at-home vision therapy efforts toward making her eyes work across longer distances. Don’t ask me how I’ll capture her attention across the room. At times, I can barely achieve this with my face directly in hers. A way will be found, after much frustration and shouting in a chipper voice and bribing with chocolate chips. Or whatever.

At the end of today’s session, in an effort to help me understand the quoits vectogram, Stella’s vision therapist let me put on the polarized glasses and do the exercise myself. Drum roll, please… My performance was shockingly poor! And you know, I could tell before the therapist said a word. During the exercise, I sensed that it was taking my eyes (brain?) a long time to fuse the images. Simply put, it was difficult. “Maybe I have a vision problem,” I thought out loud, barely believing my plainly less-than-perfect eyes. According to the vision therapist, Stella actually performed better than me on the initial fusing of the rope circles! It took me longer! It seems I suppress input from one of my eyes when challenged to track closer objects and movement, but my eyes don’t cross the way Stella’s do. I’m guessing that’s because I don’t have Stella’s farsightedness, which puts extra stress on her eyes.

I was in shock! Sort of. But then I thought about a few incidents, and the testing results made sense. When I was in middle school, I tried refereeing a little kids’ soccer game. Fresh air, sunshine, control over younger humans–it seemed like the perfect way to earn money! But I forgot to add “barrage of insults” to the list of perks. The parents hated me, and heckled me like Red Sox fans at a Yankees game. It. Was. Brutal. They were a-holes, yes. But they weren’t wrong that I sucked. I absolutely could not follow the action close enough to make calls. Apparently, as the parents of one team made painfully clear, one kid was checking everyone else constantly. Oh I tried. But no matter how close I got or how hard I tried to lock my eyes on him, I just could not see what the parents were seeing. I couldn’t follow along, couldn’t catch the little movements. In a way, I felt blind. Clueless. Didn’t help that the parents turned me into their punching bag–that doesn’t tend to sharpen performance, you know? I still fume when I think about that, and if I could rewind my life and go back to that fall morning, I’d handle the scenario soooooo much differently. It would’ve involved a string of obscenities and several disturbing gestures. Perhaps assault with a deadly whistle. Nothing those kids didn’t see at home with their wildebeest parents, I’m sure.

Come to think of it, the same tracking issue plagued me during my sports career. Basketball was my passion, but I played pretty much on instinct and with general, big-picture court awareness. I swear that I never actually looked at anything in particular. I didn’t look at the basket when I shot, I didn’t look at the ball directly as I caught it. I didn’t look at my receiver when making a pass. Never actually even saw specific people in front of me while running a play as my high school team’s point guard. It worked out okay, but I was limited. I always wondered why I couldn’t get to the next level and become a really savvy, strategic player. I had the feeling that there was a deeper level of the game I couldn’t access, and it was frustrating. My husband doesn’t have that problem. He’s a fantastic, very tuned-in point guard who can watch individual players and movement and see the small details within the flow of the game. All I had was a very general sense of what was going on. Even though my eyesight has always been 20/20, somehow, it was foggy.

I now hope that, when all is said and done, and vision therapy and patching and early childhood are behind us, Stella will wind up with better vision than me. With her glasses, anyway. I couldn’t be happier (or prouder) about that possibility.

Excuse me while I go schedule an eye exam. For me. How refreshing.

 

 

 

A quick chat with Stella

Posted on by amberhj

Me:  “Let’s get ready for swim class!”

Stella (pensive):  “There are babies in the water… I’m a baby.”

Me:  “Well, you’re not such a baby anymore. You’re getting so big!”

Stella:  “I’m getting HUGE!”

Me:  “Yes, you’re growing every day!”

Stella (dreamily):  “I’m a flower.”

Me (smiling ear to ear):   “Yes! You are.”

A crime of passion. A lesson for us all.

Posted on by amberhj

It happened in the glow of our large flat monitor with the two dead pixels, which have long taunted us with their bold red hue. Stella freaked out, both passionately and oddly, flailing her arms around her head and wailing out of apparent discomfort. A powerful emotional display for a fit based on what seemed like extreme annoyance, rather than searing pain as an onlooker might have assumed.

She screamed, completely outraged, “I’M TOO BIG FOR THIS!!!” If she’d flowed into a monologue, I’d have heard rants about deep injustice and the heavy hand of parental control squashing her inalienable rights and unflinching conviction that she is no longer a baby. I’m sure of it.

Or was it more simple? Was she referring to the “Elmo Rides a Tricycle” video we were viewing together on YouTube? Was I insulting her intelligence with this media selection? It was eye patch time and Elmo had never failed to secure her cooperation. Were those days over? Or was he the inspiration for her rebellion? After all, the tricycle song is not about the act of riding so much as it is about freedom. Something I’d considered innocent now appeared insidious. Questions raced through my mind while those dead pixels continued their mocking stare.

But then, as quickly as the storm erupted, it passed. She went back to scrutinizing Elmo’s amusing antics, entranced once again by his simple joy. It was as if her tantrum switch had been flipped suddenly to “OFF.” I breathed a sigh of relief, and left the room to go prepare myself for our errand-filled morning. Crisis averted.

Or was it? When I came back, the meaning of her earlier, indignant outcry was shockingly clear. There on the floor, next to the stained office chair where she was perched, was a gory spectacle. Her beautiful French eyewear lay dead, brutally squashed and ripped into two damaged pieces. DOA. The hinge on the right cable had not only been stretched back far beyond its capacity, but also twisted violently. Horrifying. And she’d waited until just the right moment, after I’d departed, indicating premeditation. The office, once reserved for couch cushion bouncing and mindless online escapism, had become a crime scene.

But, dear jury, was Stella the perpetrator or only a victim herself? She had experienced a huge growth spurt in recent months–why did I not realize this would include her head? Oh I’m fooling no one! Dear God, I must confess! I knew Stella’s glasses had gotten tight. I knew! But I did nothing. I stood by while Stella’s head was squeezed mercilessly by those spectacles. Now we’re all paying an emotional and financial price. For shame, mother. FOR SHAME.

As we lay Stella’s ninth pair of glasses to rest, I’m compelled to help others learn from this tragedy. If you’re child says they are too big for something, they mean it quite literally! Size up for Christ’s sake!

I rest my case.

It’s all fun and eye games until someone attains 20/20 visual acuity in her left eye.

Posted on by amberhj

Toothpicks in a tea cup.

Toothpicks in a tea cup.

Eye strainer.

Eye strainer.

Candy spears.

Candy spears.

It’s amazing what you can do with a few markers and a tea cup. Oh, the simple addition of a tea cup seals the deal, my friends.

Overall, home-based vision therapy is getting easier as I find and engineer more and more exercises that she enjoys. Yes, enjoys! She still asks to play “eye games” at times, which means she gets excited about putting on her patch in order to play said games. I still do a dance of joy in response to this, tripping over myself to get it all set up before she loses interest. I feel like a genius at times. At others, a pathetic subservient fool. But of course, I’d do anything for this kid. Like that time many, many months ago when I used pinking shears to cut the edges of many individual carrot slices, because she was happily wolfing down the jagged-edged ones out of take-out Pad See Ew but not the smooth round ones I’d been making. (And no, she still didn’t eat them.) Thankfully, I’ve come a long way since then. I think/hope.

As you saw above, I markered up some toothpicks and a strainer, and guess what? She loves to send those little candy-colored bits of wood through the little matching holes in the dome. Our vision therapist gave us foam beads which also pair up nicely with the toothpicks, forcing Stella’s left eye to work hard in coordination with her hand and encouraging her brain to accurately map spatial relations and whatnot.

Stella continued to be actively disinterested in catching that damn balloon. So I drew a smiley face on it, and her willingness to look at it instantly shot up by at least 50%. Hope and Sharpies abound.

What a difference a smiley face makes.

What a difference a smiley face makes.

Cirque de Okay

Posted on by amberhj

My official assessment is that this week’s in-office vision therapy went well. It was interesting, and eye-opening. (Once again I’ve let you down and resorted to puns.) Eye-patched Stella threw a couple blocks in frustration and engaged in impressive evasive maneuvers, but we managed to reel her back in while avoiding a fight. We totally persevered. It felt like a small victory for all of parentkind.

Helpfully, as the session got underway, the vision therapist answered all the questions I’d been asking, having gathered input from the doctor in order to do so thoroughly. And from there, she wisely kept things moving right along from exercise to exercise. In that way, Stella’s in-office vision therapy equates to a miniature three-ring circus with acts designed to mesmerize only toddlers. Imagine a large beating drum in the background and super dramatic announcer voice: “AND NOW, the great spinning disk of wonder three inches off the ground!… gasps and applause… AND NOW, the neighborhood’s tallest block tower, assembled and destroyed before your very eyes!… more gasps and applause… and now, feathers falling from the heavens… entranced silence, some “oohs,” then applause… etc. etc.!”

Here at home, Stella’s vision therapy is also a circus–one in which the elephants, lions and monkeys have escaped and are trampling the ring master and audience. It’s almost impossible to keep the show going for more than three minutes, so we do home-based vision therapy in small stints or whenever she shows interest. Sometimes, she even asks to do eye patch games! Yep. My heart almost stopped the first time she requested vision therapy. In order to better seize these moments, I pre-cut and keep handy eye patches of Magic Tape that I can quickly slap on her glasses’ right lens. Previously, I’d to stop the presses, take off her glasses, put two pieces of tape on the right lens, then carefully and annoyingly cut off the tape edges around the lens resulting in tons of tiny pieces of tape stuck to my fingers and scissors which is utterly unhelpful when you are in a major hurry in trying to take advantage of a very small window of  toddler attention.

At this week’s appointment, opening acts included a matching game–simple but smart in that it forced Stella to hold an image in mind and then scan the floor for its equal. Then, there it was. The therapist brought out this large spinning disc with slim, straight back and white stripes. On this briskly rotating table, the size of a super duper extra large pizza, the vision therapist placed some small colored blocks. Stella’s job was to snag whichever color the therapist dictated. It took a moment to teach Stella to resist grabbing the disc and to only touch the blocks. “Okay, Stella! Get the red block! No, not the table, the red block! You can do it!” She got a couple, placing her hand on them and slowly dragging them off the disc before falling into what looked like a state of hypnosis. So I put her in my lap and gave her a little pep talk/verbal assistance.  I did not, of course, help her get the blocks off the disc. I did say, “Ooh… here comes the blue block… here it comes…. here it comes…” to help keep her engaged and tracking. She got through about three rounds of this exercise (six or so blocks per round)–HOORAY! It was clear, and interesting, to me and the therapist that this was extremely challenging and exhausting for Stella. She almost fell asleep as the therapist stashed the disc away, a marked change from her energy level immediately preceding. We’re talking a full-on daze and string of yawns. Those moving stripes forced her to work so hard to focus, and it took a lot out of her. Even with Stella’s frustration level climbing higher due to fatigue, we plodded steadily through more “eye games.” But she did all the exercises presented. Some more easily, accurately, and agreeably than others. But she hung in there.

The imposing disc of wonder wasn’t the only overt difficulty. In particular, Stella seems quite uncomfortable tracking things that fall from just a couple feet above (with her left eye, anyway). She doesn’t even want to look up for the “balloon game” anymore, wherein I simply toss her a balloon from my standing position so that it falls right toward her hands for catching. But with a small but fun bit of dancing around with scarves and feathers, the therapist got her to follow their descent with her eyes and catch, with me holding her arms to receive them. Chalk up another victory for Stella’s left eye! And hope and sanity.

The session–the stretch following the disc exercise, anyway–reminded me of my basketball-playing days. Early on I was taught to practice free throws after games or drills, when my arms and body were nearly depleted. Because that’s how you get good, that’s how you become consistent, that’s how you hit the winning free-throw at the end of a long battle of a game. “Stella’s left eye is going to be a champion and leading scorer,” I thought! But that’s not QUITE how it’s going to work with Stella’s vision therapy at this point. The therapist noted that she’d save the more tiring exercises for the end of sessions in the future, so as to lower Stella’s frustration level throughout. This makes total sense, doesn’t it? It’s important for Stella to feel motivated or at least willing to go on. If she starts to feel more defeated than successful, her resistance would surely skyrocket. No, thanks!

This week’s vision therapy appointment granted me a couple realizations. First off, good vision therapists and good mothers have a core attribute in common: a careful balance of assertiveness. You can’t use brute force and you also can’t let the kid off the hook. You have to be firm, consistent and persistent, while mindful of the temperament of the individual child. Secondly, the fact that certain exercises are so uncomfortable for Stella made me understand how hard sports or perhaps even reading would likely be for her without the help of vision therapy. I don’t know if we’ll achieve visual perfection, but I have faith that Stella and her eyes will be very much okay.

With feathers, spinning circles, constant encouragement and gentle but insistent correction, we are preparing Stella for the visual demands that lie ahead in the circus of life. “…AND NOW, the social interaction and focus-requiring structure of preschool!… hearty applause… AND NOW, organized athletics of some kind…borderline obnoxious cheers!… AND NOW, completion of a puzzle without angry tossing of the pieces!… And the crowd goes wild!“

Insert screaming noise here.

Posted on by amberhj

WHAT THE HELL IS WRONG WITH YOU GUYS? (I’m talking to my brain cells here–not you, dear readers!) Ahem. I mean, hey you smart little guys up in my head. I’m concerned about you! Are you feeling okay? Gosh, I wish there was something I could do to help you. Maybe I should eat more salmon… or go for a run. Would you like that?

I am literally and figuratively losing it. Here’s the deal: I typically spend a solid half hour a day, at least, looking for my keys, phone, wallet, Stella’s sippy cup that I just filled, her Godforsaken “paci-binky” and/or sunglasses that I just put down. It’s inevitable. Thirty minutes is absolutely not an exaggeration. It’s a minimum.

Lately, I’ve been getting worse. My rage level is rising with each desperate, irate scouring of the house for items that are often right in front of my face. Things that were in my hands not two mintues before. Sometimes, I start to hyperventilate just a bit. I always want to cry, but I can’t, because I’m too pissed off.

A rage tsunami is forming. But I’ll be glad when it hits, because the wave of anger will surely wash all of our belongings into the street. They’ll be spread out and easier to find.

This is out of control!

Our vision therapy experience so far… on littlefoureyes.com

Posted on by amberhj

Just a note to say that if you are interested in how our first two weeks of vision therapy have gone, you can get the details over at littlefoureyes.com. I just wrote a post about how we wound up doing vision therapy at such a young age (24 months old), and the benefits and challenges seen so far.

In short, office visits go well, but I’m having immense difficultly getting any home-based vision therapy accomplished. They tell me this is normal for her age, and that as with the glasses and patch it simply takes time to get into an accepted routine, but it’s absolutely maddening. In desperation, I spent $60 today on toys that mimic the activities we do at the vision therapy office. Should’ve just put the money in a blender and commanded her try to reassemble the bills. Would’ve had the same level of success.

As usual I’m trying to stay positive. I know I can be more creative in figuring out new “eye games”–without breaking the bank. Maybe tomorrow, I’ll have her (with her patch on, of course) send toothpicks through the holes in our strainer! Any bets on how long that activity will last? If I can keep it going for one minute, I’ll consider it an enormous victory. Meanwhile her fancy wooden Click Clack Tree is a gorgeous living room accent and conversation piece, when she’s not putting the ladybug balls directly in the landing spot at the bottom. Why bother watching them cascade (with excellent eye tracking, like the kid below) when you can cut to the chase? Honestly, though, she does like this toy and the small colorful blocks I bought for her to stack, and I’m still holding out hope that she’ll get some real use of out them. I scatter the ladybug balls through out the room and challenge her to find a specific color, and put it in the ramp, one at a time. She just doesn’t quite want to follow my specific instructions. Go figure!

To be continued…

Random Observations, because I’m trying to post more often

Posted on by amberhj

Once in a while, Stella calls me “Amber.” Deeply disturbing yet hilarious. Though, it totally sounds like she’s imitating Cody. She’ll be in the computer room yelling, “Amber! Amberrrr! I can’t HEAR you! AMBER!?” Yep, sounds familiar.

We finally programmed her obnoxiously chipper, stuffed pal Scout to say “Stella” and her favorite color (green), food (ice cream) and animal (currently, penguin). You should’ve seen Stella’s face when she heard him speak her name for the first time. In the ensuing days, they’ve grown a lot closer. Stella’s all, “Finally I’m getting something BACK in this relationship!” But seriously, it doesn’t get much better than this. The toy now inserts her name and the aforementioned key words into songs–with superb awkwardness. If he’s singing about his “favorites,” for example, and it’s time to mention “green,” the twinkly boppy electronic music totally halts, a few milliseconds of silence ensue, then you hear the word in a slightly different tone than Scout typically employs, followed by a touch more silence, and finally the song resumes as if nothing happened. To me, comedy gold. To Stella, validation of a friendship that for so long seemed one-sided.

Is it me or does Mad Men induce heavier drinking than usual? I’ve been indulging in proper cocktails lately. A couple per night for the last few days–mainly good margaritas including only freshly squeezed lime juice, 100% agave tequila, and Cointreau. Oh all right, I’ll admit I had four on Saturday night (two glasses of wine and two very strong margaritas to be exact). During that same span we’ve been watching one episode of Mad Men, the best show ever, per evening. It’s not working out. Don and company make it seem so effortless and normal–hard alcohol on the rocks is clearly a natural extension of any meal, meeting, or fleeting frustration. Well, even my low (by comparison) level of imbibing doesn’t seem to mix well with my anti-depressants or early toddler wake-up calls. So tonight I’m drinking chamomile while watching Mad Men. After I finish this lovely glass of rose.

As you can see in my twitter stream, I kind of told “STFU, Parents” (“one of the 33 tumblrs you NEED to watch” according to The Huffington Post) to STFU. Because of this. And by the way, “STFU, Parents” defensively tweeted back! Now, normally I think that the funny person behind this site does a pretty great job of picking the most wildly inappropriate, over-sharing parents’ Facebook posts to skewer (such as pictures of poo, complaints about restaurants not putting up with their children poking other customers with straws and other horrible behavior, placenta-related horrors, and so much more). I’ve shared the site on my Facebook page and converted others–I embraced it! “STFU, Parents” reminded me to keep my own online “sharing” in check, and I usually clicked away feeling pretty damned good about my own parenting, as in, “Well, at least I’m not that idiotic. I don’t change Stella’s diapers on top of restaurant tables, and I don’t purposefully run over people’s feet with our stroller, so I’m fantastic!” But then, in my opinion, the site’s author/editor totally misinterpreted an innocent comment from a well-meaning and most likely very hardworking mom, and it highlighted the dark side of that site. I mean, you can see it everyday in the comment section–some people just hate kids, hate parents, hate, hate, hate! They take the worst of the worst parental examples and treat them as representative of all of us. (Did I mention they loath us?) The site and its rabid followers held this woman in utter contempt–someone who was really only saying, “Yes! I’d love to be as productive as these amazing individuals. Then again, I am taking care of little kids at this point in my life, unlike those folks, so I’m going to cut myself some slack.” The site and its commenters jumped to a much different interpretation: “This person thinks that the world’s smartest and most accomplished people are of no value because they weren’t PARENTS!!!” How they got there, I’ll never know. As they say in advertising, it’s a long walk. I’m wondering if “STFU, Parents” isn’t more than an angry mob. Less fun, and more fodder for parental hate, when all the parents I know are working their asses off for their families (inside and outside of the home), sacrificing and worrying like crazy, and doing their best to raise wonderful kids who keep their straws to themselves. It all reminds me of a giant sticker Stella received from a blues singer, who took a liking to her as he performed on the sidewalk in front of the original Starbucks in Pike Place Market. It reads, “Ain’t no time for hate.” True. Ain’t no time for twittering about stupid bullshit either.

Remember how in a recent, sad post I admitted to examining hundreds of photos of Stella to see if the little white reflections of flash in her eyes were symmetrically placed so as to indicate alignment of the eyes? Well, I realized today that in the photo that was mercilessly cropped in order to fit in the header of this very blog, the tiny bright spots are in slightly different places within each pupil. This may be meaningless. Or it may mean that her eyes were misaligned, though maybe just ever so slightly, all along (least since six months of age, at least). And the enigmatic nature of Stella’s vision problem deepens! My brain is currently yelling, “Amber! Amberrrrr! It’s time to watch Mad Men. Where’s the tequila? Where is it? I can’t hear you! Amber?!”

This isn’t healthy.

Posted on by amberhj

I should’ve been asleep an hour ago. Instead of taking care of myself, I spent a bunch of this Friday evening, when Cody and I are supposed to be relaxing and celebrating our wedding anniversary, scouring photos of Stella from the time before her patch, and shots from more recent times. You see, I read somewhere that the little white reflection of the camera’s flash that appears in each eye have identical placement if the eyes are aligned. If the eyes are not aligned, those little bright spots won’t appear in symmetrical fashion. Thus my mission tonight has been to use photographic evidence to determine precisely when her brain started to favor her right eye–or prove that perhaps it never did. Just writing that sentence made my brain deflate like an impaled beach ball.

Underneath it all, I’m scared. During Stella’s feeding aversion and tube days, mistakes were made at Seattle Children’s Hospital. Even before we got there, I had to fight like hell and come to the brink of a nervous breakdown before anyone would help us. I’m terrified that Stella’s vision, and all the many, varied areas of her life that it affects, will suffer greatly if I don’t catch the missteps that seem sure to happen, if they haven’t already. I fear that without my total vigilance, pertinent information will fall through the cracks, bringing her eyesight and quality of life along with it.

Questions about amblyopia, stereovision, and all the other details pertaining to Stella’s eye issues poke at my brain and wrench my heart. I feel helpless because we’re taking steps to address a complex problem I don’t fully understand. I don’t feel confident. I’m not able to trust doctors so easily anymore. Even really good ones like Stella’s current developmental ophthalmologist. Maybe I’m a pain in the ass. Maybe I am crazy. Maybe I shouldn’t question everything.

But I just can’t help it. My love for Stella–it’s so big it makes me clumsy sometimes. Hopefully, I can find the strength to achieve better balance. On one hand there is a relatively objective quest for truly excellent care and solutions based on accurate testing and conclusions, the latest research and best practices from around the world. On the other, a ferocious protectiveness that emerges out of not only my vast love for her, but old trauma and new fears.

Sadly, our past experience taught me that at the end of the appointment-filled day, it’s all on my shoulders. If I’m lucky, there will be supportive voice or two, but no one who can help Stella without me there to champion her cause. No, I was taught that Stella’s outcome can’t be left for others to devise. Can’t be put in the hands of those who don’t see the nuances of her day-to-day visual reality, those who see Stella as another patient or chart and not the owner of the cutest toes ever to touch the surface of this planet.

I’m her mom. I look into her big eyes, the color of blue ocean made softer by partly cloudy skies, a hundred times a day to tell her “no screaming!” “good job!”, “you did it!”, “take turns!” and most often, “I love you!” I’m having a hard time letting go. I’ll never be an expert or an ophthalmologist, but I need more answers and education about Stella’s particular situation. Is it too much to ask to get a solid understanding? I don’t think so. I hope I can go about getting it in a way that builds bridges rather than creates tension with the wonderful people who can help my sweet Stella. And surely after that, with some work, I can let go and simply follow the path laid out for us. Not viewed through a lens of fear, but simply a watchful, hopeful, and much less exhausted eye.

P.S. Today, Stella and I did a good job with our daily home vision therapy exercises. We even had fun. I got an email from the vision therapist in response to my questions that was kind, helpful and with promise of more answers to come from the doctor.