About

meHi. I’m Amber. I tend to define myself as a dual-purpose individual: mom and writer (here’s my portfolio). But like you I’m a lot of things. A baller (hoister of three-pointers), em dash enthusiast, neurodiversity advocate and neurodivergent human, wife to an electric-guitar-playing environmental engineer (Cody), sister to two wonderfully witty and strong women (Corinne and Emily), and oldest daughter to east-coast icons Barb (whom we lost too soon) and Greg.

My daughter, Stella, was born at 3:26 a.m. on August 17, 2008, a day ahead of schedule and after 32 hours of un-medicated labor. Notice how I don’t necessarily call it a “natural” birth. How could any baby’s birth be called “unnatural”? Besides, that much pain doesn’t feel “natural.” You know what? I should remove this from the “About” section, as it seems totally irrelevant now. A footnote at best. Borderline problematic in that it contributed to 48 hours without sleep before Stella’s arrival. But at the time it seemed super important and unhealthily so. There’s something interesting about the desperation I felt to do things “right.” It’s part of my story, so I’ll leave it in for now.

My husband and I were totally unprepared for what would follow her arrival. We’re told this is normal. Most of what followed could not be called “normal.” I’m now okay with it now but, man, did that acceptance take time.

Stella was breastfed for over two months. The plan was to do so for a full year. This dream crashed and burned, thanks to a lovely case of reflux and probable cow’s milk protein intolerance (or more accurately “my milk” intolerance), which caused Stella pain and led her to refuse to eat. Hypoallergenic formula and an NG tube followed. For a couple of tube-feeding months, it looked as though she would never resume normal, adequate eating. But thankfully, with some wonderful support that I was very fortunate to eventually find, I successfully weaned her from the tube.

Here, I documented our journey toward a tube-free, food-friendly Stella.  There was a point when we said, “Phew! That feeding fiasco is over, and now typical, care-free family life can begin under a beautiful rainbow of blissed-out normality!” Not so much. There was always this sticky layer of stress and struggle binding us, though we could never grasp it. Cody and I knew we were doing something, maybe everything, wrong. Especially me.

Funnily enough, though no one was laughing, Stella’s eyes started crossing at around the 18-month mark. Later, we learned that her vision issues were accompanied by motor and sensory challenges that impact her development and regulation. Stella has done a lot of occupational, physical and vision therapy. She has been seen by a lot of experts, probably too many. I’ve consulted with people around the world in order to find the best path for Stella. At one point we flew to Cleveland to get an opinion and some exercises for Stella to do, and the highlight of the trip was seeing an owl outside the hotel. We now know Stella is wonderfully neurodivergent and some of those things we tried to do to help her were misguided and based on a societyal view of differences as deficits. I know better now and I’ve apologized to her, by the way.

I’ve been a writer for over 15 years. Mainly a copywriter. I’ve written ads, websites, boarding announcements, billboards, manifestos, you name it. I’ve also written about neurodiversity and worked as a neurodiversity hiring advocate to help eliminate the bias against social and learning differences that results in shockingly high unemployment rates for perfectly qualified autistic and otherwise neurodivergent job seekers.

I have aspirations. To complete a home renovation. To someday control my cowlicks. To get a borderline invasive facial treatment to treat my undereye bags. To find jeans that don’t stretch into Bieber’s version of Hammer Pants. And, as with everyone else I’ve ever met in my entire life, to write a book. Maybe? Or just an article. Or maybe just this blog. Or a napkin-based series of scribbles. I want to tell a story of awkwardly yet triumphantly disagreeing with the status quo. About being not-quite-neurotypical and making peace with that.

Questioning the status quo is how I helped Stella get past the feeding tube and it’s how we’ve navigated her strabismus and amblyopia and sensory issues and come to embrace autism. I welcome and seek out evidence-based approaches and research from pubmed.gov all the damn time. I LOVE VACCINES. When at first, no “experts” had real answers for Stella’s feeding or vision issues, I started asking a lot of questions. Our story is not just about shit hitting the fan, but about modern motherhood as I have experienced it—anxiety versus acceptance, and a strange mix of insecurity and bravery. Letting go while holding on. 

I’m genuinely glad you stopped by. So much more has changed than has stayed remotely the same since this blog began. We got through some really challenging times and if you’re here during a tough time, know that you’ll reach the other side, too. Drop a line via email (lifeandtimesofstella@gmail.com) or comment sometime. Thank you for your time, interest, and (hopefully perfectly aligned) eyeballs.

The value of seeing differently

“Anisometropia” sounds like a mythical city built out of licorice, but it’s actually a vision condition that Stella has dealt with all her life in which the eyes’ refractive powers differ. On Friday, however, we picked up her new eyeglasses in which the prescription is the same in both lenses. This is the first time that her eyes are piecing together a “3D” view of world unimpeded by the obstacle of disparate levels of magnification.

Wearing her new glasses over the past day, she is noticing that small type is fuzzy. She hates it. But just like when she first wore glasses at 18 months old, we were told to allow a two- to five-day adjustment period before worrying that the new script is wrong for her. The hope is that after the brain has a chance to adjust to new visual information, and small muscles change their habits in response to different focusing requirements, the view becomes clearer with less effort required.

During our last optical shop visit, Stella told me as we waited for service, “My vision is sharp as a hawk, mom. I don’t need new glasses!” I launched into an impassioned explanation about anisometropia and her borderline amblyopia how this moment was a big deal–getting glasses with the same magnification for both eyes, finally! I did this because facts sway Stella more than platitudes, and because I needed to kill time while we waited as Stella was a bit agitated. Nothing is simple or easy, but many things are amazing. Someone with her prescription wouldn’t be expected to have great stereoscopic vision, nor see everything so clearly. But she does. It’s just an excess of “near work” that causes issues. It’s just hard to be farsighted, comfortable looking up at the horizon, in a heads-down nearsighted world.

Stereoscopic vision depends on the ability of the brain’s visual cortex to bring together the eyes’ different views of the world, using the similarities and discrepancies to make sense of distance, depth, etc. But what if the two images are so different that they don’t share a point of reference? What if one is more blurry than the other? What if it’s not automatic and takes conscious effort to see in three dimensions?

Great-great-grandfather of the Oculus Quest, the Brewster-type stereoscope circa 1870. Source: Museo Nazionale della Scienza e della tecnologia Leonardo da Vinci, Milan.

Every day last year, Stella came home from school with a headache. So, in every IEP meeting, I would try to remember to mention her vision: severe hyperopia, anisometropia, partially accommodative esotropia. It’s easily overlooked given how smart she is, and it’s overshadowed by the social-emotional challenges that snowballed in the context of an un-inclusive school environment designed to support neurotypical kids. Yet it’s undeniable that due to her vision alone, without regard to any other differences, Stella has had to work harder than just about any- and everyone else. She has contended with double vision at times, as well as pain and fatigue from reading off a screen or paper all day. To say I’m proud of how she perseveres is an understatement.

I noticed that after Stella listened to a book on her Kindle, she remembered every detail. At school, I was told at some point that she often doesn’t really retain key information from reading. Autism or working memory was cited. I suggested that maybe it’s because her eyes aren’t the most reliable way for her to take in information.

It’s so simple, yet so revolutionary, to suggest that people favor not only different ways of gathering information from their world but also prefer different types of information, flat out. And that this is okay. That’s the premise of neurodiversity. It makes sense that for most of humankind’s existence, neurodiversity was a given, so central to our daily life, our survival and our ability to thrive, because we lived in relatively small communities. I’d like to suggest that communities can be thought of as brains, each person with a different role or niche contributing to the functioning of the whole, just like different parts of our physical brains have different roles and niches contributing to our own overall functioning. Sure, there’s some overlap. Some people have similar skills. Some parts of the brain can pull double duty or pick up the slack when another part of the brain falters. But diversity is innate, and vital.

Today, most people are no longer enmeshed in communities, sharing the load of daily existence. By and large, there is no divvying of roles, no playing a day-to-day part in a living community “brain.” That makes life harder for most neurodivergent humans, with our spiky skill profiles. When your brain so heavily favors certain types of information and tasks over others, it’s hard to cover all the bases every day–from maintaining homes, careers, commitments, social connections and family relationships to saving receipts and making returns in time to remembering to sign up and actually signing up your kid for summer camp ten million months in advance or, I don’t know, contending with the Sisyphean task of figuring out what to make for dinner and then actually making it, step by step.

Some autistic and other neurodivergent people may struggle with certain aspects of daily life, while also noting and bringing to light details and connections that others overlook. Again, we’re all simply gathering or emphasizing (slightly or dramatically) different types of information from our surroundings. This is helpful in a community “brain” scenario. If everyone sees the world differently, and connects back to the group, we get a fully dimensional view of the world with more depth, color, detail, and perspective than we could ever get on our own or among those who are likeminded. That’s how civilizations are built. That’s how innovation happens. That’s humanity at our best. This holds true in any place where people come together in pursuit of a common goal or interest–neurodiversity, racial and gender diversity, and disability inclusion are all proven to boost business performance, for example.

Within social movements, most notably civil rights and women’s suffrage, there lies another take on the importance of diverging points of view coming together to bring new ways forward into focus. Having a so-called “militant,” more aggressive force–I think of Alice Paul or Malcolm X–within a greater movement can enable progress by highlighting the hypocrisy of a mainstream that demands nonviolence and yet is underpinned by violence itself, while in comparison making the more peaceful activist groups seem credible or “reasonable” to the reluctant majority, who otherwise would outright reject them.

Due to racism, sexism, and ableism, we value the perspectives and contributions of certain people over “others.” As such our entire society is afflicted with anisometropia. We can’t see all the beauty of the world, all the wonder, all the opportunities–because our field of view is limited. Stereoscopic vision requires that we not only take in what’s right in front of us, but what is all around us. (Our periphery is, ironically, central to our vision.) I think of the misguided souls who took part in January 6th insurrection and how ugly the world must seem to them, how much of the picture and possibility of our country they’re missing.

Miraculously, Stella never dealt with full-on amblyopia, a common outcome of anisometropia wherein the brain just can’t use both eyes together. The inputs are too different to reconcile, and over time one eye is tuned out in favor of reliance on the vision of the stronger eye. She likely avoided it through years of part-time wearing of an eye patch, vision therapy, and reliance on her bifocals. A lot of work. Interestingly, paradoxically, and perhaps relatedly, Stella has off-the-charts visual-spatial intelligence–now there’s a parent brag you probably haven’t heard before.

Little Stella rocking the Quoits Vectogram during a vision therapy session, years ago.

When toddler Stella’s vision issues were discovered, long before her autism diagnosis, I was fearful and unsure about where her visual abilities would land and how her life would be impacted. I sought peace of mind in the fact that of the many unique human vantage points that inform and elevate the collective are those who are amblyopic or otherwise visually impaired. A surprising number of history’s most celebrated painters were amblyopic, likely helping to explain their talent in capturing and translating the feel of a three-dimensional world in a two-dimensional medium. I did not expect Stella to be some sort of artistic genius or “savant,” but knew she could find her place and hone her strengths. Not just in spite of challenges but partly because of them and the unique view of the world they inform. I believe that now more than ever.

I’m eager to see Stella’s headaches subside and her comfort increase as she adjusts to her new glasses. We’ve come a long, long way from her early bespectacled years. I’ll never forget the day, after continually taking off her frames, she yelled, “I’m too big for this!” and snapped them in two. Message received, I never let her outgrow another pair of glasses. Pants and shoes? That’s another story altogether.

I’m excited to see how Stella’s self-driven life will continue to unfold in light of all she’s overcome and with the unique perspective she brings to every moment. Social expectations don’t guide her. Stella’s path is all her own, in a way that more conventional thinkers and neurotypical minds can’t really fathom. While it can be hard to navigate outside many of the guiderails of expectation, this form of freedom can also be a gift. I hope it will eventually feel that way for her.

Zooming out further, I’m stubbornly and cautiously optimistic that everyone’s lives, including hers and all those who are neurodivergent or disabled or otherwise different, can continue to grow richer and expand into their full potential. As we come to appreciate different points of view as not only valuable but essential, we can move beyond merely “seeing” and instead make sense of and discoveries within the world, appreciate deeper meaning, solve big problems, and realize greater purpose.

I now realize that my vision has improved along with Stella’s over the years. Nothing is simple or easy, but many things are amazing. You just have to be open to different ways of seeing.

End the intolerable cruelty. 

By the end of World War II, more than three million people had been evacuated from European cities to stay clear of German bombs. Most of the evacuees were babies and children voluntarily separated from and by their parents in an attempt to keep little ones safe. It turned out that the risk of separation rivaled the threat of missiles.

Finnish children were so damaged that the effects were passed down to the next generation in the form of severe mental illness. British children also fell prey to long-term deeply negative psychological effects. This is intuitive. But if somehow you need evidence, there are countless studies demonstrating that secure attachment is crucial to basic wellbeing.

We are children We are innocent

Stella’s take on injustice against children.

As Laura Bush wrote yesterday in her Washington Post Opinion piece, one of our most shameful periods as a nation was our internment of Japanese American families at spare and desolate camps within our borders during World War II out of baseless and hysterical fear that these law-abiding parents and children were threats to national security. Even then, however, families stayed together as apparently our nation, even in such a dark and brutal time, considered that a step too far. Internment alone was so traumatic that its innocent victims endured real psychological and physical harm. We know all of this. We know that warehousing human beings is hurtful and that separating children from their parents is depraved and severe and inhumane.

As such one can only view what we are doing to families at our border as terrorism. Children and parents arriving at our doorstep seeking safe haven are being ripped apart and the reason on record is to deter others from attempting the same. It’s warfare of the mind and heart. The intolerable cruelty is in fact the entire point of the policy. And this is not, as some claim, a longstanding issue unearthed by “fake news” media nor is it a tactical remnant of Bush or Obama only now coming to light. Make no mistake. It was enacted last month by monsters within the current administration.

Let’s be clear. Terrorism is defined as “the systematic use of terror especially as a means of coercion.” Terror at the most fundamental level is “a state of intense fear.” And in the political context it’s defined as “violent or destructive acts (such as bombing) committed by groups in order to intimidate a population or government into granting their demands.” Is there any greater fear than that of a child missing the people that serve as their emotional and physical anchor in this world? Look no further than World War II for confirmation that removal of children from parents rivals bombs in destructive capacity.

We can no longer pretend to be the good actors in the world. The United States is choosing to inflict intense pain and suffering on people who only want safety and who have nothing–with children’s wellbeing as the intentional fallout. Disgust. Despair. Anger. Rage. These are the only humane and justifiable responses to what is going on.

Which again brings us back to World War II. In reading about the Sisak children’s concentration camp I saw deeply unsettling and very clear connections to what is happening at this very moment in tents and Walmarts on American soil. In what was officially called the “Shelter for the refugee children,” the Croatian Red Cross secretary at the time included the following in an account of the conditions at Sisak:

The children in the children’s barracks cried inexorably and were calling their mothers, who were only a few steps away from the children, but the fascist criminals did not let mothers to approach their children… These children, who have not yet reached the age of ten, swear to us, “Come on, sister, bring us mothers, bring at least mothers to these little ones. You will see, if you do not bring them their mothers, they will suffocate, by the tears alone.

We have not only turned our backs on an ideal we once at least strove for, that ‘shining city upon a hill.’ Once the liberators of concentration camps, we are now becoming everything we claimed to defend against. So comfortable with nazis and their sympathizers and racist policies.

I can barely think about anything else as this nightmare unfolds. My own child is here with me at home tonight after her guitar lesson and a day spend with friends. Every child deserves safety, security and the opportunity to thrive. I don’t care which border they do or don’t cross. To deny parents their children and deny children the most basic of human rights–so very deliberately–is plainly a crime. Stella is nine years old and like many growing children learning to face the massive uncertainties of our world, not to mention my damned self (an adult brought up in the most beneficial of circumstances), struggles with anxiety. She still often sleeps by my side due to fears of the dark and of creaking noises in the night. I think of children screaming for their mothers and fathers at this very moment with absolutely no comfort in sight. Only a black hole of American-made terror. From every angle, it’s morally and emotionally and physically unbearable.

While the brutality and idiocy of our government is overwhelming, washing over us in waves and across screens all day every day, we can not turn away. We can and must work on behalf of the families broken by our country’s enforced hate. Otherwise how can we look our own children in the eyes? Otherwise we are not just bystanders but enablers of another historical and irreparable evil.

Sign the change.org petition.

And this petition by the ACLU. 

And this MoveOn petition.

And please call your representative demanding an end to this terrorist policy.

If you know of any other actions that can be taken immediately or over the coming days and weeks, however long it takes to enforce change, please leave a comment.

 

 

 

 

Dark circles and bright spots

I’m growing ever more concerned about Cody and myself. On Wednesday morning  I had a crying meltdown after driving way up north for an appointment for Stella, which I thought had been squeezed in before preschool that day but was actually squeezed in before OT yesterday. I completely forgot about her 25-minutes-away PT appointment on Monday until I heard my iPhone’s musical reminder, ten minutes prior to the start time. Stella had the meltdown for us that time. Cody accidentally convinced himself and his boss that a work event was today, but it is actually taking place tomorrow. We are exhausted and it appears to be catching up with us.

Like so many parents, we have no childcare support. No family within several states. We have a four-and-a-half-year-old whom we love more than anything but who does not let us sleep for more than four hours straight. Close to five years of severely broken sleep take a toll. (I believe you need six straight hours for a proper sleep cycle?) You can see it under our eyes, and some days, in our shortened patience. Less than ideal, to say the least, when you have a child who requires extra patience, understanding, and planning.

In order to afford musts and, well, luxuries, but also to give me something that is mine and not revolving around my daughter (for her sake and mine), I took a new job. I want to fund Stella’s costly therapies and possible private school and a kitchen that is not held together by duct tape, so I’m working 20 hours a week mostly from home. I hope to make it last, but if this keeps up, I’m not sure I can. We don’t have the affordable, high-quality childcare we need, and I’m not willing to leave her just anywhere–we tried a nearby drop-in preschool for extra work time for me and it didn’t work out very well for Stella. I want to accompany Stella at her weekly appointments (observing and participating when I’m not a distraction for Stella–it depends on the day), work and play with her each day at home, give her time to rest during the day to fend of double vision to the extent possible, and take better care of myself.

So, I’m feeling pretty crappy lately, to be honest. Stella has been more up-and-down as therapy progresses, which is to be expected. But just as she needs more support, our reserves seem to be rapidly depleting. While we feel we are doing our very best,  we have to do better. We have to find support. The truth is I’m scared that Stella’s needs would not be met or that she would be treated unfairly if someone didn’t truly understand the situation, and I’m unsure of what the right childcare for us would even look like. Part of me knows I need to work and have breaks and part of me doesn’t want to leave Stella at all, because I want to give her the extra bear hugs and comfort she needs lately.

Frankly, I’m also dealing with some anger. I feel bad about it but it’s there. The anger is directed at people along the way who have been so dismissive of our concerns, stress, anxiety, and struggles. Who assumed if I just did X-Y-Z (presumably in line with how they parent their children), put distance between myself and Stella (as if I wanted her dependent on me), or just “relaxed” that everything would be fine. Overall we have it pretty good in life, but we have not been dealt a typical parenting hand. This was recently validated in a big way, which was both sad and a relief. What I have learned from all this is that judging other parents is absolute, 100% bullshit. I’ve done it here and there on this blog and I will never do it again.

However, I can step back and think about all the people who have supported me through the journey so far, with playdates, encouraging comments here, and special gifts from family for Stella, which mean a great deal. I get that it’s a two-way street. I have been very consciously extending support to others, lending a hand when I can. It is like magic in terms of improving one’s mindset.

Cody, Stella, and I chipped in with some volunteer work that a friend’s family routinely does at a downtown emergency shelter for homeless mothers and their children. We helped provide and serve dinner, and it gave us some much needed perspective. I was moved by how the people staying there, who must be so terrified and living in absolute limbo, noticed Stella’s difficulty and upset, and reached out to her. Stella listened shyly to a superbly kind pep talk from one woman. We received empathetic smiles and not judgement. On the way out, Stella received a kiss and hug from a four-year-old girl living in the shelter with her mother until they can find placement in a longer-term shelter. I could see that this girl, the same age as Stella, probably had some developmental delays, and clearly, given her family’s situation, was not able to receive multiple therapies to address them and maximize her potential. That sweet girl.

We may not have much support, but we do have a home and employment. We can get Stella the support she needs to overcome her challenges and flourish. Stella’s physical and occupational therapists have noticed some postural improvements in Stella already! She can now do some of her reflex integration exercises herself. We have been able to stock our home with swings and tools and sensory retreats to better meet Stella’s needs. I can also see that warmth and understanding is out there, even in the most unexpected places. There is hope.

In terms of exhaustion and support, I do not expect to solve the whole problem, probably ever. But I can at least find a reliable, warm, thoughtful babysitter for once-in-a-while. We’ll start there.

Look what the cat granddaughter dragged in!

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

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

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

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

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

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

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

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

Merry Christmas and a Happy New Home

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

 

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.

Fabulinks

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!