To Parents in the Storm

I don’t write about Stella very much anymore. Not because there’s nothing inspiring to share, but for fear of crossing boundaries and exposing a person who is all her own. That said, I know that there are still parents around the world reading this blog because their baby or young child is facing challenges with feeding / eating or vision / sensory / development. I know many of you are terrified, just like I was.

Unfortunately, I can’t impart directly into your brain the sense of faith and relative calm I now feel having been through the storm. But I can tell you that when I see Stella eating salmon rolls and cucumber rolls at a sushi restaurant, I think of you. When Stella reads a chapter book and is totally engrossed and properly using her bifocals (!), I think of you. When she comes home from school happy and recounts an interesting or funny anecdote from her friend, I think of you. There were many days when I simply couldn’t see the way through to these moments. But here we are. You’ll get here too.

Now and again, we go back to our old friend vision therapy; since summer we’ve been doing about 20 minutes a day at home and 45 minutes a week in the office. We still work on persistent toe-walking. She has true academic strengths and she also has to put in more effort in areas that others (parents and kids alike) take for granted. I still seek out ways to support her visual and overall development. But I don’t feel crushed by anxiety anymore. It’s been replaced by gratitude. Partly because Stella is thriving, not to mention extraordinarily creative. And partly because we as a family have emerged from a sort of mental cocoon and emerged more vibrant as a result. Cody and I are full of confidence for Stella and she for herself.

For my part, I learned to stand up for Stella and myself. I learned that being 100% typical is boring–and probably impossible. I learned that there is always hope.

If there is anything I can do to share that hope with you, please let me know. There’s plenty to go around.

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Crossing over

 

 

 

Posted in Family update, Lessons in parenting, Milestones, Stella's eyes, Tube weaning, vision therapy | 3 Comments

Winter is leaving

I will miss her bracing brisk air
Sharp crystals and soft mounds of snow
A rest from heat and pause in growth
Cold quiet that heightens your aliveness
And insulates the roots of the trees

We have softened ourselves flat
In the warmth of convenience
Except in plastic decorative odes
To ancient seasonality and rhythm
And winter has no place here anymore

Earthbound rituals gave way long ago
Replaced by the relentless disconnect
Enforced by commerce as religion
And winter has no place here anymore

I remember sledding through the woods
Into trees and over boulders and brush
Until we found the path to carry us over
All the way to the winding street below
Freer and happier than any summer day

The preciousness of nature’s cycles
And the wildness of existence have faded
A housing development replaced the forest
Of our seemingly vast childhood kingdom
And winter has no place there anymore

But she will not go quietly into oblivion
The rage of the unheard and discarded
Wells up in nature like the rising tide
Demanding penance before taking leave
Of a world unworthy of her wonders

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I am not a poet but

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A short, simple poem came to me today. It emerged out of nowhere, after some rainy gardening. It also happened to appear amid ongoing efforts to stay positive despite a barrage of cold news. Stella still faces some challenges but is doing well. She just started second grade (said her first day was “awesome!”) and achieved 10/10 in 3D vision testing for the very first time recently! Trouble brews in several other of life’s spheres, but I’m feeling strong. And proud to be standing tall. Here it is, paired with the above (miraculously unfiltered) photo taken in the agricultural and floral showcase barn at the Washington state fair.

Autumn Garden

Sunflowers bow their heads
Necks tired
From following
Summer’s sun

Dahlias bloom defiantly
Hanging on
As if to say
“I am sunshine”

 

Posted in Family update, Milestones, motherhood, Stella's eyes, vision therapy | 6 Comments

Where do you keep your garlic?

garlic-keeper

As you’ll witness at any mall in the United States, the mental states of humanity reside on a vast spectrum. Our brains are not so easily compartmentalized from one another—and I don’t care what the DSM says. I recently bought a white ceramic garlic holder from Crate and Barrel. Joyce helped me by holding my clean, white mixing bowls—replacements for my decade-old chipped set—at the counter while I browsed, and I eventually placed the comically oversized garlic replica in the basket she’d handed me. It really is shaped like an enormous head of garlic, but with holes for aeration. Now, every time I glance at this newly acquired thing, I’m truly delighted in a heartfelt way. It cost $16 but feels much more valuable, perhaps because I perceive it as functional art, mass-produced as it is. My fixation doesn’t seem exactly “normal,” does it? But we all fall in love with objects and covet a great unnecessary number. Just in varying degrees. Someone diagnosed with what is referred to as “autism” may seem, at least to so-called neurotypical people, to prefer objects over humans. But browse at ebay sometime, where all kinds of mental states track vintage bowls or new designer dresses and whatnot over weeks and compete to win. Immerse yourself in the vastness of Walmart and really take in the scale of STUFF. Peer into meticulously kept and totally unkempt closets across this country. Go to the nearest estate sale, where the often innumerable possessions of the Greatest Generation are up for grabs to the rest of us, and see the acceptable hoarding associated with decades of booming prosperity. We trade our lives for things. It’s just a matter of degree. No one needs five rakes. There is simply no good reason to own 30 cheap T-shirts or 15 ceramic knomes. We can do without garlic holders, certainly.

I was listening to my local NPR station, KUOW, one morning in the car when I heard a panel of guests discussing their views on Amazon.com and the company’s role in and value to our tech-drunk city of Seattle. It happened to be the multiple male guests who expressed a positive view of this Web-based behemoth, whose prime service I utilize quite frequently. Its innovative, job-spurring presence, to them, represents the spirit of our growing metropolis. After another of their blindly glowing reviews of Amazon’s impact, the lone woman on the panel blurted out, “But all Amazon is doing is helping us buy more garbage!” There followed a brief moment of total crickets, pure stunned silence, in which I smiled so wide it hurt. I don’t know who she is, but ever since, I have wanted to write that woman a letter of enthusiastic appreciation. I wonder what she thinks about her statement, if it even registered as a powerful for her, as it did for me, especially given the non-reaction she received on air. Did she ever receive the high five she deserved? I wonder if, like I often do, she cringes herself to sleep because she uttered something truthful that pushed everyone off center. She deserves applause and a book deal. Certainly not an ADD diagnosis for interrupting the accepted form of object madness.

 

 

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Kitchen Renovation of Liberty

“We shall not have tiled in vain.”

I posted the following kitchen renovation log entries on Facebook over the span of a few months and they developed a bit of a following. By that I mean a couple dozen people who know me seemed to love them. I have no doubt they will find their place on the nation’s historical register, alongside documents like the Declaration of Independence and the Statue of Liberty’s adoption papers.

When we were about to get started on the kitchen almost a year ago, we were giddy with excitement. Ready to embark on a journey of rejuvenation. But it was a total slog, and gross, because it was a disgusting, dirty, neglected kitchen and we did all the work ourselves, except for the new hardwood floors. It’s been “mostly but not quite done” for a few months now. Half the tile is grouted, for example. The other half continues to need some scraping of Thin-Set. The toe-kick things aren’t in quite yet, allowing a collection of dog food, dust bunnies, and party favors to accumulate nicely. But wow. What an accomplishment, right? Aren’t we heroes for doing this? No, we’re not. We’re cheap.

So the inspiration for this log came from HGTV shows where whiney new homeowners complain about everything from paint color to three weeks of slight inconvenience as top-notch professionals swoop in and do everything for them. Also, one day on the eve of our renovation, Cody mused about how he couldn’t wait to retrieve leftover pizza from the fridge without having to bend over slightly. I agreed. Then I laughed, stepped back, and marveled at this perceived material “problem.” So I immediately posted to Facebook, of course.

Cue up a Ken Burns-style documentary soundtrack and enjoy.

Kitchen reno log, day 4: Inhabitants’ spirits remain high, but already signs of fraying tolerance are starting to appear as supplies run low. The sub-flooring is laid bare and I fear before too long, frustration will be as well. Despite our flawed humanity, we are unwavering in our determination. While carving out a brave new kitchen is a test of soul and strength, the end result will be a source of pride and beacon of triumph for our entire community (of four including a dog). May it long endure.

Kitchen reno log, day 8-ish: Colonists have begun to exhibit strange symptoms. Kansas (of Nevada) has been vomiting at night, and we pray that a vet can help determine if this is due to nerves over our countertop and appliance choices, or consumption (of drywall or stuffed animal innards). The youngest member of the colony has descended into a form of madness, refusing to wear her glasses. Elder Cody is complaining of aches and pains, but what he really desires is freedom from toil, we suspect. Building a new kitchen is forging a new way of life. Not for the faint of balls. The walls are in shambles, the sub-flooring creaks ominously, and our bodies have begun to falter, but our spirits will never be broken. The vision of a remodeled kitchen, with no duct tape on the floor to bind linoleum layers or our souls, remains a beacon too bright to be denied. May we never relent.

Kitchen reno log, day %$#!: As our kitchen staples and supplies are encamped in the dining room, quarters are tight. New trails are being blazed thusly for wayfarers traveling from living room to other areas of the settlement and beyond (like to the backyard or whatever). Setbacks plague the burgeoning colony, yet I’ve never been more proud to be an inhabitant of this new world born of cabinets from IKEA, various supplies from Home Depot and Overstock.com, and the love of freedom from super gross tile and linoleum. One day our clueless progeny will look back and marvel at (or totally take for granted) the conviction and labor of the kitchen’s founders, if not their organizational skills. Times like these require boldness of spirit the likes of which were never seen in the oppressive kitchen of olde. With screwdrivers as our bayonets, and curse words as our rallying cry against constant errors, we remain steadfast.

Kitchen reno log, day a million: Mental, physical and spiritual fatigue had settled upon us in a thick blanket along with dust from the newly sanded wood floor when we were visited by representatives from the Massachusetts colony, who offered elbow grease, expertise and free meals to bolster our efforts and weight gain. ‘Twas an enormous blessing. Though each step of the building process is typically repeated three times before successful completion, the kitchen colony, against all odds, is taking shape as a place for finding fortune and not just fortune cookies out of Chinese take-out bags. It shall be a destination for comfort food and warm conversation, and not just cold pizza and chilly remarks about someone’s failure to read instructions*. If not confidence or morale, may sheer momentum carry us home. May God smile favorably upon our combination of white cabinets, stainless steel appliances and black countertops**.

*UGH.

**For at least two score years, or beyond the various warranties involved.

Kitchen reno log, day 300-or-something: While many (hopes) have died, progress continues. The backsplash has been set into the walls of the kitchen as well as the fabric of history. Angles may be slightly off in corners under cabinets, but where precision fails, spirit and perhaps laziness persist against all odds. What is clear, unlike the grout lines, is the indomitable spirit of this settlement and its love of food. Why, the bedrock of this place–what is it other than a desire to eat and prepare food under the warm blanket of freedom and without the oppression of duct-taped floors and splinting plywood of olde? Tis our hope, and our unflagging faith, that our arguments, strife and slow pace will in the end quicken the cadence of liberty, deliciousness, and entertaining. God bless you all, and God bless this kitchen.

Just don’t look in the bathroom–it’s anarchy in there.

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A blessing and a curse

Word Girl

Stella is now 6 and a huge “Word Girl” fan, as reflected in her recent artwork.

Well, hello there! First I want to apologize for not getting back to those of you who have reached out over the past couple of years. I’m feeling ready to re-engage a bit with the blog, and share more of Stella’s progress and our family journey. I hope to hear from you, too.

For now, I wanted to help spread the word about an amazing Oscar-winning documentary short. “Our Curse” was created in Poland by little Leo’s rad parents. I was in awe of how this new mother and father stuck together emotionally through the trials of their child’s life-threatening condition. I also felt the barely-kept-togetherness of the moment where they replace baby Leo’s breathing tube, as in many ways it so closely resembled the many times we replaced Stella’s NG tube. No doubt other parents of children with tubes or vision issues and other challenges will appreciate this work of art and love and honesty.  Just in general, the film is raw and beautiful. “Our Curse” is a blessing, as I suspect it will help many families feel a bit less alone, and a touch more hopeful.

The movie (available in full on The New York Times’ website):

Our Curse

The blog (where you can see how Leo is doing):

LEOBLOG

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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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