motherhood

Meet the brave and amazing Ava.

Posted on by amberhj

Clearly, Ava's pretty fabulous. (And she just so happens to be the #1 fan of Yo Gabba Gabba in all the world.)

I’d like to introduce you to Ava. For Ava and her family, tube feeding is a precious gift. I wanted to share her story with you all to show the other, positive side of tube feeding, and to try to help send more supporters her way. She and her mother deserve the biggest and most raucous cheering section possible.

I’ll let Ava’s mother handle the introduction. From Ava’s CaringBridge.org journal, updated regularly by her mom:

“Ava is a smiling, laughing, dancing 5 year old diagnosed with a mitochondrial disease.  She loves school and dogs, the computer, and her family, who love HER more than anything in the world.  She’s dealt with so much more than she should know, but takes it mostly in stride with an amazing attitude.”

Ava’s diagnosis came after four years of dealing with a host of serious issues and symptoms, from severe GERD to dysmotility to cardiac arrhythmia to hypotonia and on and on and on… a string of conditions that for so long had no concrete explanation. By then she’d experienced an incredible number of  invasive, life-saving procedures including placement of a G-tube in 2006, followed by a GJ the next year. Finally, a very specialized type of biopsy revealed her true diagnosis. Mitochondrial disease comes with a sweeping range of challenges. To hear the description of the condition is to be haunted by it. From umdf.org, the website of The United Mitochondrial Disease Foundation:

“Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.”

Clearly, mitochondrial disease takes a vast toll, poses daunting and often heartbreaking questions, and total vigilance is required on the part of caretakers in a non-stop effort to maximize quality of life and encourage and prolong vitality and well-being. Tube feeding is one of many types of ongoing support that kids and adults with mitochondrial disease often require for survival. The type of strength and dedication and refusal to settle that Ava’s mother has demonstrated is impossible to capture in words. Ava enjoys the best possible quality of life given her condition, and tube feeding is essential to this. Look at the photos on her site and you’ll see a vibrant, adorable, happy child. And that smile! Oh my goodness. I imagine that to her mother, Ava’s wide-as-can-be grin is the sweetest reward, the best confirmation of her good efforts, the fuel that feeds her soul. Ava’s mother has continuously and tirelessly pushed for the very best options available, proactively searching out any and all treatments and therapies and support for her sweet child, and diving headfirst into the crusade for a cure through her involvement and leadership within The United Mitochondrial Disease Foundation.

This woman and her daughter are the kind of people that should be celebrated in our society. Why is it that with all the soundbites constantly buzzing at our ears and eyes, we never hear about the Avas of the world, nor their heroic mothers? Love this strong deserves a spotlight. I’m shining a little one on it, and I hope you’ll join me. Post a message of support in Ava’s guestbook–I dare you to resist that smile.

In closing, a well-chosen quote I found on Ava’s site, which seems to sum up her mother’s philosophy:

“Listen to the mustn’ts, child.  Listen to the don’ts.  Listen to the shouldn’ts, the impossibles, the won’ts.  Listen to the never haves, then listen close to me… Anything can happen, child.  Anything can be.”
— Shel Silverstein

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!

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.

I cry more than the babies in “Babies”

Posted on by amberhj

I just watched Babies. Finally! And I cried a lot. Did anyone else have that reaction?

Must be because I had severe anxiety from the moment Stella was born. Seeing sweet, simple moments from the four babies’ early months made me wish I’d been less insane and better able to enjoy Stella’s. Even in the more stimulating environments of Tokyo and San Francisco, I sensed more calm than I remember from those days. I loved her with fiery intensity immediately, but there wasn’t much time to be joyful. I was hyper-vigilant, exhausted after being awake for two days during her birth, and worried about everything even before her feeding problems began. I remember looking out the hospital window right before being sent home and all I saw was grayness, trash and hard corners. I distinctly remember thinking, “The city is so harsh. I don’t want to take Stella out there.” Sometimes I wonder if my stress played a role in creating the medical issues that damaged Stella’s intestinal tract while kicking my anxiety into the stratosphere.

As I devoured every moment of Babies, I felt a sense of longing and even a touch of grief. I just watched it, during Stella’s long afternoon nap, with a cup of chai green tea and a cozy, thick, fleece blanket on this chilly, rainy late summer day in Seattle. The exact same weather marked Stella’s first day on earth. I remember that Cody admitted to me that he found the rain sad, wishing for sunshine on her birthday. But later that day he broke the big news to his best friend, who pointed out to Cody that rain was perfect. It makes new life possible and helps it grow. I now realize Cody was struggling right along with me, though his friend’s words did wonders in that particular instance.

On THIS rainy late summer day two years later, I was able to just relax and watch a movie. Stella and I met up with a friend for lunch today, after a leisurely morning at home, during which she and I ate lamb and pita and I held a real conversation with another adult while she played. We’ll probably just take a walk in the rain when she wakes up. When Cody comes home, we’ll have dinner together. Maybe, just maybe, we’ve got a bit of that elusive peacefulness now. In between tantrums, of course.

Takeaways from Dr. Susan Barry’s Web Interview (School Crossings: How the System Lets Down Children with Vision Problems)

Posted on by amberhj

First off, I have to admit that I entered the web meeting eight to nine minutes late. This will be the opposite of shocking to anyone who knows me.

I was infuriated! I’d been anticipating this thing to a pathetic degree and just finished Dr. Susan Barry’s Fixing My Gaze, a godsend of a book for parents of children with strabismus. (Click here to listen to the NPR story about Sue.) Unbelievably, I was at my computer two minutes before the start time. And only then did I realize I had to download frigging webinar software, and this computer hates me and therefore refused to install it despite several admirable attempts. So instead of thinking about it for two seconds, I called Cody, who was on a walk with Stella so that I could have peace and quiet during the webinar. (Is “webinar” really a word? If so, it shouldn’t be. I hate it.) He said, with no annoyance in his voice whatsoever, “Use the laptop in our bedroom.” So I literally sprinted into our clothes-strewn cave of a room and logged on to an ancient IBM ThinkPad. Thank God it worked, or I would’ve thrown lamps and other breakable items in frustration. Pile of clothing, at least.

Anywho. My coverage, as promised…

By the time I got to the party, hosted by the College of Optometrists in Vision Development (COVD), Sue (I guess I’ll be cozy and call her that) was recounting some of the background laid out in her book. She had 20/20 vision in both eyes. So, in the standard vision tests they give in school, where you read a chart of letters (20 feet away) with one eye covered and then the other, her binocular vision problem went completely undetected. It’s not just because one eye was covered so as to avoid revealing the inability of her eyes to work together, but like Stella, her vision was pretty much fine from far away (say, 20 feet), and not so sharp within a few feet. Because the vision test didn’t reveal the source of her low test scores, she was labeled as a “dim bulb.” Literally. Teachers told her parents to accept the fact that their daughter had low intelligence.  Sue, neurobiologist and author Sue Barry, Ph.D., was placed in a “special needs” class with an assortment of children with widely varying impairments and diagnoses. Side note: Sue’s best friend was physically impaired by polio, though she said it was quite obvious his intellect was just fine. Sue never raised her hand to answer questions because she had no confidence in herself. Thankfully, her mother never, ever doubted her high intelligence, and Sue saw and felt that.

Of course, Sue’s mother did more than merely believe in her. She took action that contributed directly to Sue’s later success. She read to and with Sue constantly. More than that, whenever young Sue expressed excitement about or interest in any topic, she would come home to find that her mother had placed a perfectly chosen book about that very subject on her bed. A little surprise, an eagerly opened treasure. Reading was fun.

Sue explained why her mother’s efforts were so powerful. If a person anticipates a reward for an activity, brain activity is generated that changes synapses. By making reading to rewarding and enjoyable, Sue’s mother helped shape her brain! Despite the fact that her binocular vision problem made reading much more difficult than for most, she became a slow but competent reader. She found joy in it, which propelled her through the visual challenges. I wish I could give Sue’s mom a huge hug, and perhaps a parade. Honestly, read Sue’s book. That woman went to bat for her daughter. Much respect.

I have to add that Sue and the moderator further discussed the topic of how to encourage reading in kids who, as Sue did as a child, find it uncomfortable and difficult. For most kids with vision problems that make reading taxing (but not impossible), total avoidance of reading and reliance on books on tape isn’t the answer. They suggested that parents and teachers simply be patient, and take it slow. Start with less challenging material until their confidence and endurance increases. Provide breaks during reading. Small efforts like taking turns reading paragraphs with your child can make a huge difference.

After recapping how her childhood was affected by her vision problem, Sue delved into the story of a boy named Eric (also shared in Sue’s book). For a long time, no one knew Eric had a vision problem. Eric’s eyes looked straight. He could see well from a distance. Bu his vision was poor when looking at things close-up, which made schoolwork frustrating and aversive. As a result, Eric was a poor-performing and distractible student who was diagnosed with and medicated for ADHD! This unfortunate mistake wasn’t corrected until they happened to visit a clinic (for kids with ADHD) that offered binocular vision tests. Only then did they realize Eric’s true problem. According to Sue, following vision therapy, Eric has gone on to become one of the top students in his college class.

The moderator helpfully asked Sue to name any key studies or resources that she could suggest to parents. She cited two:

Reading Strategies in Mild to Moderate Strabismic Ambylopia: An Eye Movement Investigation (published just this year). Key finding: These kids have longer fixations and less accurate saccades.

Randomized Clinical Trial of Treatments for Convergence Insufficiency in Children (a study by the National Eye Institute). This trial resulted in recommendation of a 12-week course of office- and home-based vision therapy.

Note: Sue also suggested that parents visit COVD.org to check out their “Research and White Papers” and reminded us that the chapter notes in her book are full of references to the wealth of research and studies cited.

Because the point of this “webinar” was to empower parents and educators to better support children with vision problems, the moderator (again, very helpfully) asked Sue what activities she found most enjoyable as a child. My ears perked up. This is about building confidence, and focusing on strengths rather than worrying about weaknesses! But when I heard what she said next, as she began her answer, I got a tiny bit sad. Because she explained that ball sports were difficult and not very enjoyable at all, as they involved demanding eye tracking which requires coordination of the two eyes. She just couldn’t follow the ball, puck or other fast-moving object well enough. So, while it makes no sense and we really don’t know what Stella’s vision will be like or if she’ll even be interested in sports, I got a little misty. Maybe Stella won’t be able to play basketball. Or softball or tennis. Maybe she won’t get the same joy out of the sports that sustained me through middle and high school. (Sorry for the tangent.)

BUT. Sue said that less visually demanding sports like swimming and running (and I’ve heard ice skating is also a favorite of strabismic kids) were very enjoyable to her. In fact, she may’ve had an advantage. In Fixing My Gaze, Sue gives many examples of how the brain compensates for challenges in one area by building up abilities in other areas. That’s basically my lame-ass explanation of neuroplasiticity. In cases of injury or disability, the brain adapts to help us figure out new ways of doing things. In her book, Sue describes a key realization  during a vacation to Hawaii–she was far better at finding the way back to their accommodations at night, though a dark and winding path, than the rest of her family. She couldn’t rely as much on sight, and other senses were filling in the gaps (thanks, neuroplasticity!). Her mind seemed to note how her body moved and felt as it moved down the trail, and she was able to navigate easily and intuitively while her better sighted companions were lost.

Driving a car down the street was a whole different story, however. She was a terribly slow and unsure driver who actually designed her entire life around avoiding the activity. That was her prime motivation for beginning vision therapy–not a belief that she’d be able to see in 3D after 48 years of living in a flat world. After all, she’d been told that after early childhood, this type of correction was simply impossible.

Sue admitted that she often receives desperate emails from people with vision problems. They plead for help in figuring out a way to improve their vision, as past efforts have failed. Wisely, she pointed out that this desperation is a sure indicator that their current doctor is not listening and responding to their concerns. She urges people who feel unsupported and hopeless to find a new doctor right away. An easy way to find one who specializes in vision therapy is to go to COVD.org and enter your zip code in the upper right corner under “Locate a Doctor.” Only a real expert who specializes in binocular vision can help. In other words, you need a developmental optometrist, like the one we were lucky to find for Stella and through whom I found out about this interview with Sue. Hooray!

In the Q & A period at the end of the session, a listener asked if vision could regress following vision therapy. Sue paused a bit, and explained that beginning at age 48, she did vision therapy for one year. This entailed one day a week in the office of Dr. Ruggiero, and 30 minutes a day at home. While her vision has retained its dramatic improvement in the years since, she admits that she still does a small amount of vision therapy at home, just to be proactive. Sue noted that while adults can make amazing advances with help from to high levels of motivation and concentration, children are in a much more advantageous position. A child’s mind is more elastic, and her visual system still developing. For a young person, say, six months or so of vision therapy could very well do the trick, their eyes more quickly trained to work together and new mental habits more easily entrenched, quite possibly for life. With, perhaps, a tune-up here and there (in the form of vision therapy) as an adult.

It was clear to me during this meeting that Sue and her buds at the COVD are trying to get the word OUT! Not only in regards to better, earlier detection of vision problems, better support of children who have them, and awareness of the effectiveness of vision therapy, but also about the widespread belief that there is a critical early window for correction of vision problems associated with strabismus. As Sue put it, conservatively, “the ‘early window’ dogma is overstated.” Their shared hope is to educate eye doctors about vision therapy so that they will then “lay out options for their patients.” A booming AMEN to that.

In closing, I’m so glad I listened in. It helped me realize that I need and want more clarity on exactly what Stella is dealing with. I know she has accommodative esotropia, which is a type of strabismus, and has started down the path (at least) to ambylopia, hence the patching. But do anisometropia and convergence insufficiency also apply? They seem to, especially the former, but I’m not sure because no doctor has ever used those terms in regards to her. Knowing how these terms fit with Stella, or not, would help me interpret and apply what I’m learning. I’ll be bothering her eye doctor even more now. Thanks, Sue! Sorry, doc. (Not really.)

I hope my wordy recap was helpful to someone. That said, you can get all of Sue’s important findings and insights in Fixing My Gaze. As the cover attests, it’s a must-read for anyone interested in vision or our amazing, adaptable brains. Seriously, I have a new appreciation for my eyes and the contents of my cranium. Now if only I could make my keys stop disappearing….

Proud of my veggie rebel

Posted on by amberhj

One of the many reasons to shop at PCC (Natural Markets), besides tons of carefully selected fresh, local organic produce? Their Kid Fruit Program, described on their website as “Free fruit for kids! Kids ages 12 and under can choose a free serving of a fruit or vegetable to eat while their parents shop. Kids are occupied with eating a delicious snack and parents feel good about establishing healthy eating habits.” Brilliant, I know.

Earlier this week, Stella and I ventured to PCC for what has become a weekly ritual: Slightly-less-angst-ridden-than-before grocery shopping followed by a walk to the “chocolate store” (Theo Chocolate‘s showroom and factory, just down the block and around the corner from PCC in Fremont, where free chocolate samples are abundant and the atmosphere is welcoming) then a walk back to our car along a portion of the Burke Gilman Trail that abuts the canal. After some Hazelnut Crunch and Coconut Curry milk chocolate bites, we wander and wave to friendly boat captains, watch the boats’ wakes ripple out and tumble and splash against the rocks at our feet, and occasionally spot fish taking breaks in the nooks and crannies along the edge. Also, and this is less quaint, I have to physically restrain Stella from launching herself into the water and divert tantrums by pointing to birds.

During this last trip, we meandered through PCC’s produce section as usual, in terribly inefficient fashion because neither my list nor my head are remotely organized. Well, Stella’s mental/verbal tractor beam locked in on the carrots. So I handed one of the massive, bright, slightly dirty spears to her, expecting her to wave it around like a wand or imitate a bunny rabbit as she’s known to do. I figured I’d slice it up and saute it for her later. But no. She proceeded to vigorously munch on that carrot throughout our time in the store (which meant she also sat contentedly in the seat of the shopping cart–unheard of! Thank you, brilliant PCC!), and all the way to the chocolate factory. On our way out, a cashier remarked, referring to the Kid Fruit program, “How cool to see a kid pick a vegetable instead of a fruit!” Stella finished at least half of the entire large carrot, Bugs-Bunny style, and her chin took on an orange hue. I so wish I’d captured that moment on film–my little twenty-three-month-old walking down the street in her chic blue glasses, with tiny pig tails in her hair and a giant carrot in hand.

Mind you, this  is the girl who, after a day of fun at a birthday party a couple of months ago, during which she only ate crackers, cookies, and cake, came home and demanded broccoli. I quickly steamed some and she devoured an entire bowl of the green stuff. This is also the girl who, upon spying a fresh white bag or box from Trophy Cupcakes in the grip of a passerby, recognizes the logo and goes absolutely bonkers, breathlessly demanding “birthday cupcakes!” Her “intake” fluctuates, like most toddlers, but this girl loves to eat.

Stella’s feeding issues are so far behind us, I can barely see them in my proverbial rear-view mirror. But, when I saw her eating that carrot, I was lifted up. I remembered and I realized. We are such a long way from hypoallergenic formula through an NG tube. So close to two years old. Beyond lucky.

Put me back together.

Posted on by amberhj

Ouch.

"Stella! No, use two hands! Gentle! Ah, crap. Just hand them to me."

Cody, Stella and I were all over at Cooper’s house the other day while his parents enjoyed a date night, an event that Cooper (Stella’s best bud and play-date companion)  refers to as an “update,” which really makes sense if you think about two parents going out and spending time together away from their one-year-old. Music is almost always playing while Stella and Co0per are together, because they love to dance (which looks a look like jogging–actually, sprinting–in place) during play dates and within five minutes of arrival one or the other starts in with, “Music? Musiiiiiiiic?” So, we’re intermittently bopping to the music and sending miniature skateboards down ramps when this irresistibly sweet, poppier-than-pop song by Meaghan Smith comes on. The chorus innocently asks, “What’s the use in fixing what’ll only break again?”  And good lord did it hit the proverbial nail on the head. Pesky tears invaded my eyes and a boulder lodged in my throat and I just danced toward the corner until it passed.

As you now know, Stella got her glasses on Friday. We were in the optical shop for an adjustment today, Monday. Already. At first, on Friday morning, I thought she was taking to them amazingly well. She wore them for a long stretch on the playground, briefly removed them and asked me to put them back on while in the car, and she wore them all through lunch. But now I’m realizing that her initial interest can be chalked up to sheer novelty. The more she realizes they’re sticking around, the less wants to do with them. Usually, she’ll wear them for two to five minutes before ripping them off with one hand, stretching the frames in a way that looks like nails on a chalkboard sound. It’s excruciating to see her twist and throw them. But it’s not just that. It’s tough because it’s such a battle, actually more of a war with many, many battles taking place and well-thought out strategies and tactics required for victory. It’s stressful and exhausting to see her tear them off, and then my brain starts whizzing, as in, “Okay, how long can I give her before I put them back on? How long before her eyes are in danger of crossing? What will I distract her with this time–a book? No, we’ve gone though all her favorites already. Stickers! I’ll try the stickers.  What if she doesn’t let me put them on–for the fourth time in a row during these last few minutes? Should I put them in the case for a while or is that like giving up? Wait–have I eaten yet today? When does Stella need to eat? Maybe she’ll wear them if I give her some chocolate chip.” Cue the screaming.

Like a well-programmed mombot with super human strength and endurance (but not really), I automatically bend over backwards to repair a fragile something that is forever poised to break. The glasses. But also something in me (and maybe Stella, too?). When Stella got over her feeding aversion, no longer required a feeding tube and learned to enjoy eating, I thought we were clear. We were going to be okay from then on. But it wasn’t true. That’s impossible, and every parent on earth faces the same perilous reality. There’s always another challenge, frustration, or heartbreak around the corner. Thank god they’re so damn cute and resilient. And for every soul-searing ER visit and agonizingly difficult hurdle that you somehow muster the strength to clear, there’s–oh, where to begin–thousands of laughs that lift you up so, so high, dozens and dozens of triumphs that affirm you, your child, and life itself, and about seven hundred smiley, silly dances. Not a bad bargain at all, even if the song makes me cry.

She’s worth it a million times over.

No acute abnormalities.

Posted on by amberhj

This is part of a new segment I’m calling “Eye on Stella: Strabismus Watch 2010.” Sorry. I just thought that was kind of funny. And I’m running with any humor I can find these days.

The ER, whose job it is to save lives and not provide conclusive diagnoses, called Stella’s condition “convergence spasms.” A quick google search on this term terrified me (apparently, in some cases it’s brought on by hysteria–Stella’s tantrums aren’t THAT bad), and thankfully led me in another direction. After some research, and due to the nature of what actually happens to Stella’s eyes on occasion, I’m convinced that they’re incorrect. My theory is that Stella has the treatable, relatively common condition known as intermittent strabmismus, known to flare up during times of stress, fatigue, or illness. Of course, last time I checked I was a stay-at-home mom and copywriter–not an ophthalmologist. Though, I did diagnose my husband with photography-induced crazy-eye. Nailed that one.

So, last Friday. It was:

The culmination of a week during which Stella barely ate and lost a whole pound of weight (at least), due to a bastard of a cold entailing massive congestion and a cough that could drown out a chainsaw.

The day Stella may have bumped her head on the window sill in the kitchen. I was making lunch, heard a scream, and only saw what happened out of the corner of my eye.

When her eyes rolled in severely, a total of ten times by 11pm for two to ten minutes per spell. When this happened, she couldn’t see remotely straight.

The evening we headed to her doctor’s office having snagged the last appointment of the day, waited as they paged neurology at Children’s, then headed to the ER, where they awaited our arrival and Stella was not allowed to eat or drink for several hours and underwent a head CT scan that showed “no acute abnormalities.”

Since that day, I’ve been carrying around a feeling that threatens to burst my chest. It ebbs and flows. It makes me cry, sometimes. It makes me think about what-if’s and the meaning of life. It makes me wonder, once again, if I’m strong enough to survive parenthood. But I can’t quite pinpoint it. It’s too vague and all-encompassing to grasp. So I keep wondering what it is. I don’t think it’s as simple as “anxiety” or “fear.” It’s something to do with those. But more do to with love. It is absolutely huge and it is always there, probably in every parent, but right now it’s much too close to the surface. Which makes it hard to function.

On the other hand, after unthinkable tumors and lesions and brain bleeding were ruled out, I am obviously extremely relieved that the issue appears to be isolated to her eyes–or more specifically the muscles that control her eyes. If I’m right and it’s strabismus, early intervention ensures an excellent prognosis, ideally achieved through vision therapy (eye exercises) and maybe a patch to strengthen the weaker eye (which seems to be her right one). But I’m having a hard time as we navigate the two weeks that separate us from her ophthalmology appointment at Children’s Hospital. Every time she cries or screams in frustration or stares off into space or rubs her eye or refuses to nap or has a tantrum, I feel a contained form of panic rise up and I’m gripped by a question that is more of an all-encompassing mentality: What is wrong? This is a terrible way to live, really. A mode of existence encouraged by the worst-case-scenario culture of the internet, where I spend too much time. It’s a way of being that I am familiar with, as a worrywart by nature and having gone through Stella’s feeding aversion with her, but it’s currently heightened. Maybe there’s a touch of PTSD-like trauma from our tube days. Following Friday’s scare, I jump too quickly to the idea of wrongness. But! There are also times in which I see more clearly and with more appreciation everything that is right. The contrast between the two is sharp. It makes me ache.

I sometimes wonder what is wrong with me, and the way I see–the world and myself. Why is this all so hard for me? Why am I so jumpy around Stella since Friday? Why does it sometimes feel as if I walk on eggshells through life and motherhood?

As I sit here, I’m afraid of the radiation of her CT scan (ugh, do I remember correctly that they had to run it twice? why didn’t they work with us to keep her still in order to get it right on the first try?) and of an admittedly imagined potential for vision loss (could this nebulous eye issue make life harder for Stella?). Since Friday, I’ve seen her right eye drift in very briefly a couple times, and it jolts my entire nervous system like an electrical current. I’m disturbed when I see her eyes misaligned, not because she is any less beautiful or sweet for it, but because it’s a signal that something is likely amiss with my baby–something I don’t understand. What’s causing it? What does it mean? How will it affect her? My mind fills in the blanks, creating scenarios and possibilities with whatever is lying around: fear, anxiety, hope, and love so strong I can hardly bear it sometimes.

Back when Stella wouldn’t eat, I always felt 100% convinced that in the end, she would be just fine. Beneath all the panic was a kernel of certainty. It’s still there.