Something Amazing Happened at Disneyland.

(Note: This is not a sponsored post. I don’t get near enough traffic to attract Disney’s attention.)

In May, after our first three months of OT and PT with Stella, we splurged on a trip to Disneyland. We’d been worrying and agonizing about new realizations and a new path for Stella. We’d been working hard, with some really tough days, getting into a new rhythm with daily therapy at home. We needed to have some fun. We wanted to get away. We thought Stella deserved an enormous treat. So, shockingly, we did something about it. We up and went to Disneyland.

We stayed at the Disneyland Hotel, with watersides and pools for Stella, and an enchanted tiki bar for us. An excellent choice. I shelled out a little extra for a room on one of the highest floors. I was not paying for fanciness. I was paying for pure elevation. During a wedding-related hotel stay a couple years prior in Minneapolis, we were perched in a room on the 20th floor or so. I was struck by how deeply Stella enjoyed sitting on the wide, welcoming window sill and gazing out at the city. Her eyes scanned and rested, scanned and rested, and she took it all in. She enjoyed telling us about everything going on below. The hustle and bustle could be comfortably observed from above. I wanted to give her that chance again, this time with a view of palm trees and pools and the hotel grounds. She loved the view, even laughing at kids’ funny antics in the pool way down below, and the ability to see and know what could be explored. A very sound investment, if you ask me.

We are probably one of the only families in Disneyland visitor history to actively avoid interactions with Disney characters. We saw people waiting in very long lines for a picture with Minnie. Yet, when she approached our table at Goofy’s Kitchen, dread engulfed our table and we were tempted to pull down the proverbial drapes and pretend we weren’t home. Stella wouldn’t look her way, but gave her a no-look high-five. I chatted with Minnie for a moment, exaggeratively extolling her virtues and pointing out how kind and gentle she was, then she was off to the next table, and we exhaled. I know that Stella loves Minnie, but it was too much to be on the spot and face to face. One day she’ll have the confidence to tell Santa what she wants for Christmas and perhaps interact with, or at least not be afraid of, Disney characters. She’ll do that when she is ready. She loved the parades and waved to all the characters–again, from a distance that felt manageable, from the point of view of a spectator.

There are a million anecdotes I could share, but what stands out most about the trip is one ride, and Stella’s dramatic response to it.

I didn’t expect Stella to like this ride, which involves wearing 3D glasses, spinning through space in a way that feels unpredictable, and shooting at constantly moving targets. Because it’s a total sensory bombardment, and because we (foolishly) attempted a 3D movie not long before, and she lasted 15 minutes before we just had to leave with a very distraught Stella. But she absolutely loved Midway Mania. And for her, it was vision therapy.

Why did this ride work for her? She was engaged and motivated. She loves Toy Story, she loved the “game” aspect of it, she loved seeing beloved characters who seemed to be responding to her and cheering her on, she loved feeling like she could do it herself and, I suppose, be instantly rewarded by congratulations from her favorite characters and video-game-esque sounds and scores.

After the initial shock wore off and we realized that, seemingly against all odds, she really loved this ride, we went on Midway Mania at least eight times. Which to us was a whole lot. I often had to carry her in line, but it didn’t matter. When she expressed interest in going on that ride, we made it happen. We were shocked that she could do it and wanted to do it. Not only that, but her scores improved with each successive ride. The mere fact that she could tolerate the glasses, see in 3D, and play this fast-moving interactive game at all was beyond highly encouraging, but we didn’t really let ourselves wonder what it meant for her vision. We were thrilled that she was having so much fun with it. We followed her lead.

Then, for one fabulous week after this vacation and its highly entertaining form of vision therapy, I saw (temporarily–again, just for one week) astounding residual effects. Not bad for a grand total of 50 minutes (maximum) spent on a ride. For example, Stella had previously avoided talking to our neighbors, almost completely. And we’ve lived here in this house and neighborhood for a year and a half. A day or two after our return from Disneyland, while standing in our backyard, she talked to our neighbor for about 45 minutes. On her own. Cody and I were inside, watching from the kitchen, incredulous, watching the clock and marveling at what was unfolding. Later, the neighbor told me that Stella filled her in about every aspect of Disneyland, what flowers we were growing in our yard, and more. The neighbor postponed dinner and hung in there with her for so long–they knew how big this conversation was. We all did. At school that week, Stella’s teacher remarked on how well-rested Stella seemed, how she was not getting frustrated like she used to. Her occupational therapist noticed (without our prompting or telling her about the ride or any changes we’d noticed) that Stella seemed more regulated, and more aware of and interested in people, noises, and activities around us. It’s not that Stella doesn’t notice anything usually. She does! She hears everything, for starters. But she just doesn’t always slow down, remark on, and engage us about them. She just seemed more in tune with a bigger share of the world around her.

As Stella’s developmental optometrist explained it amid a much longer and more helpful description, so much of Stella’s mental energy goes into a conscious effort to simply keep her eyes straight. Interpreting and reacting quickly and gracefully to the world around you–especially the unexpected–can be extraordinarily difficult when it takes a large share of your inner resources to simply “see!” We believe that for that brief window after Disneyland, this was no longer the case. When her eyes were better coordinated without requiring strenuous effort, her world opened up because she could relax and take it in. It was a truly beautiful sight, and I’d seen flickers of it before, when Stella did vision therapy two years ago.

And so, two weeks ago, Stella began vision therapy again. For months leading up to now, we’ve been focused on building the foundation upon which vision rests, and that includes basic motor skills, sensory integration, and postural and primitive and reflexes. That work is ongoing alongside vision therapy. Yes, another crazy ride. We’re working hard to give Stella a better view of the world, but it’s more than that. We’re working to empower her to comfortably and confidently engage with the world, and without the urgent need to keep so much of it at a safe distance.

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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.

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Spring

I know that our efforts in OT and PT have really just begun, but I swear I already see little buds that will one day burst into blossoms. Slowly, steadily, surely. I see her ever-so-smoothly writing letters on the chalkboard wall with a nice grip. She is sounding out the silly non-words she lays out with her set of wooden Montessori letters. Several times the other day she briefly coasted, lifting up both feet, on her balance bike in a proud first! Snail chases, slithering laps that exhaust me but thrill Stella, have replaced last week’s bear hikes, and so joyfully and so perfectly in terms of fun and therapeutic benefit! So yes, I see positive signs peaking up.

Stella’s daffodil bloomed out front alongside the walkway. So while departing for dance class, I pointed out to her that the flower she planted had finally opened up. Later upon arriving home she stopped, bent over, gently cradled the blossom in her hand–the way you would a toddler’s chin–and quietly said, “Good job, daffodil.” She revealed her sweet nature and my over-reliance on “Good job!” despite knowing better. Regardless, the encouragement is called for. Blooming takes courage, hard work, and plenty of hopeful patience. 

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Onward

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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How do you solve a problem like IKEA?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

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Perilous Play

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

The Micromanagement

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

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

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

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

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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.

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