low vision – The Hillhouse

Minor/Major

April 25, 2021May 17, 2021 Posted in An Ongoing Journal...Leave a comment

This morning I took my son to have his first covid vaccine. As he is still 17 and a minor, I was allowed to accompany him. But for his second vaccine in three weeks, I will be made to wait outside.

There really is no way to prepare a mother’s heart for this transition. Of course I’ve known it was coming and have tried as best I can to make peace with the new reality. Come this Wednesday, Elihu will no longer be a minor. No longer will I be the keeper of his medical records, no longer will I be responsible for his money, no longer will I be the recipient of his grades. How very strange indeed. I have been this person’s sole keeper in every way for the entirety of his life – and in just one moment the whole thing comes to a close. Thankfully he is an incredibly responsible person, and he is well-equipped to take the reigns. But me, I’m just not ready to hand them over.

When Elihu was two and a half years old he had a bad case of the flu, and I took him to the emergency room. There was a one-year-old in the waiting room, and Elihu doted on the tiny boy. The child had had an earache and was frantically crying in distress, to which Elihu responded with such tenderness. He cooed to the toddler, helped distract and soothe him. They spent a good fifteen minutes together, and by the time we were called in, Elihu had coaxed the child into a quiet and peaceful state. It was shortly after we got into the car and began to drive home that Elihu spoke his very first sentence. “When I grow up, I want to have a baby, Mama”. I looked in the rear view mirror, stunned at what I’d just heard. I saw him just sitting there, his pacifier returned to his mouth and looking out the window. My tiny boy, such a huge concept. My son had always been different, even at that age I’d known it. This sentence was just the first of many confirmations. He has always been wise beyond his years.

I first knew there was something distinctly different about my son when he was four months old. Aside from being colicky and hard-pressed to sleep without me next to him, I just knew something was not right. I couldn’t put my finger on it, but clues were starting to add up. When I walked him outside in a stroller, he’d close his eyes and slump to the side, but when we’d enter a dark indoor space he’d sit up and open his eyes. He couldn’t open his eyes in the great room of our home, the south wall of which was entirely made of windows, but he came to life in the dark basement playroom. I knew he had an inability to see in bright light, but until he could speak to us, we’d be left to guess about how he experienced his world. One evening I remember nursing and then rocking him, trying unsuccessfully to get him to sleep. And so I held him tightly to me and twisted my torso from side to side, desperate to find the rhythm that would finally take. I remember pulling him away from my chest and looking into his eyes, to find that his pupils were rapidly bouncing up and down. I flushed with adrenaline; had I just done this to him? Had I shaken my baby? A careful inventory of my actions told me that I had not, and yet something had changed. I remember wishing so dearly that I could just know if he was afraid, if he was in discomfort. How, oh how could I make it better?

It was my friendship with the keyboard player in Steppenwolf that became the key to understanding what was ‘wrong’ with Elihu. Years earlier I’d met John Kay, the lead singer and fellow who penned the iconic song “Born to Be Wild”, and I’d known him to have some condition with his eyes that made him colorblind, light-sensitive and also unable to drive (ironic, isn’t it? His song is the anthem for bikers everywhere, and yet John’s never driven a day in his life). As I sat at my desk pondering my son’s situation, I flashed back on this memory and immediately fired off an email to Mike. He responded, confirming my suspicion. And there it was. Without an internet search, without a doctor’s diagnosis. I’d learned that my son had Achromatopsia. Now, finally, I knew.

I’d had some neighbor girls take Elihu to the park, and instantly I felt a deep panic, an intense need to find and hold my baby. Now that I knew, I had to make it better. I ran through the streets until I spied the small clump of kids – Elihu was riding on the shoulders of one of the taller girls, his eyes squinted shut. I grabbed him from her and held him to my chest, shielding his eyes from the daylight. I shall always remember how I felt in that moment; I become a fiercely protective mother, and in that instant I became wholly dedicated to my son’s comfort and ease. In the months that followed I found a low vision doctor in Chicago – who actually specialized in Achromats – and Elihu would soon get his first dark glasses. He would take his first steps outdoors, and our world would become a little less stressful. And even though his father loved him dearly, he did not share my concerns for our son. He wasn’t moved by Elihu’s first steps in daylight, he thought I made too much of Elihu’s light sensitivity, and he would often chastise me for coddling our boy. But I didn’t care. Like I said, my mother’s heart was fierce. Nothing would prevent me from being Elihu’s champion.

There was so much I needed to impart to my son. Ever since he could walk it was my deepest desire to equip him to live as well as possible in this difficult world. My heart longed to give him ease, to give him insight and understanding. There was so much to teach him – where to begin? Folks who know me understand that I’m pretty frank and unedited in my speech. I say what I mean, and I believe for the most part that it’s better to express than to withhold. And that’s the tack I took with my son. If my four-year-old wanted to know how an engine worked, I was going to explain it to him. Seriously. He was going to get the real story, not some dumbed-down explanation meant just for kids. I always spoke to my tiny son as if he was an adult. That’s not to say I didn’t coo to him as a baby, or speak in tender, maternal tones to him – in fact I always spoke to him as gently and lovingly – and respectfully – as possible. I never scolded him as if he were an idiot. I always offered an explanation of actions and consequences, as if he understood. Because if he didn’t yet understand, he would at some point.

How could I teach him about the seasons, the holidays, the traditions of our world? How could I convey the context, the meanings of so many seemingly random cues? And if he saw no color at all, and if indeed the world was hazy and hard to see, how could I teach him to discern things? All of this nagged at me during my son’s childhood. And so I chose to read to him. A lot. (I wish now that I’d kept a list of the dozens upon dozens of books we read. I implore all new parents who might be reading this to keep a log of the tomes you read to your child. In revisiting them you will also revisit shared childhood memories.) Since my son’s vision was not great, and since reading for a good length of time fatigued him, I felt it was best that I take on the job. Every night of his life until he was around ten or eleven I lay next to him and read. Oh the places we went together. The adventures we had. What a huge and full life we had just from our nighttime books alone. This, I think, is in large part why my son turned out to be such a thinker. Having limited vision has also contributed; he has been left to live much of his life inside of his thoughts. While the other kids were watching movies or playing video games, Elihu was identifying birdsongs, inventing melodies of his own or creating lines of poetry.

My mother’s heart had always been heavy with the knowledge that my son would not always be able to join his classmates in so many experiences that most kids consider mundane. Swimming doesn’t work well on account of the bright light that usually accompanies the experience. Moving fast – as in running – is dicey in that Elihu can’t really see things until they’re upon him. When he was smaller the two of us had a system we used while out walking whereby he would minimize the many missteps, falls and scrapes that came of his limited vision. Elihu couldn’t always discern differences in grade, so as we walked together I’d quietly offer “step up” or “flat surface” as we went along. So imagine my surprise when one day at lunchtime my legally blind child whizzed by me on a bike in front of his school! His fifth grade teacher had taught him in just a few periods. I’d always wondered how – or even if – we would tackle this skill. I cried! Oh such gratitude I had for that dear woman! This step was huge. And it opened new doors for my son that I had previously thought would never be options. And can you imagine that my twelfth-grade son has been getting straight As in his phys ed classes? In fact he is even rather aggressive in some sports – but if you’d told me this a few years ago I would not have believed it possible.

Elihu’s father had decided to leave the marriage our son was five. I’d thought that Elihu was too young to grasp the situation, and so when we moved across the country to live in a house next door to his grandparents, I’d thought it wouldn’t be a big deal. He would have everything he needed, lots of nature around, and family too. I always welcomed his father into our home, and have always encouraged their relationship, so he saw his father quite a bit in the early years here at the Hillhouse. (My friends never understood this arrangement; they thought it was wrong to have my ex stay here with us. I thought it was the humane and right thing by way of both dad and son. My comfort could take a back seat for a few days here and there.) I did absolutely everything I could to ensure my son had the best possible childhood. I think I did the best I could with my situation.

However, it became apparent in the first few years post-move, that Elihu had been deeply saddened by the change. I’d thought that if I’d kept up appearances and continued to be of relatively good cheer that it would mitigate any possible negative outcomes. I hadn’t wanted my son to suffer the emotional challenges that other children of divorced parents do. Yet for a while my dear son really was troubled. If I’d expected him to be sensitive to the nuances of life, how was it that I thought he wouldn’t notice this huge life change? A year or so after we moved here I chose to speak to him candidly about the divorce, how it had troubled me too, but how both people needed to be in agreement for marriage to work, and how his father and I were not in agreement. I believe that the truth helped him to understand and make some peace with the situation. It was a really tough experience for both of us, but we got through it by addressing it honestly. Hard a time as it was, it helped us each to grow and become more emotionally resilient.

I needn’t worry about my son now. In fact, I’m tremendously eager for the life that awaits him. He is completely ready to take on absolutely anything. (Recently I apologized – again – for having brought him into this crappy world. I asked him if he might be a bit discouraged about the challenges ahead. “On the contrary,” he answered. “I’m excited. I’m gonna make life my bitch”. !!) Me, I’ve never been particularly good at anything – I don’t enjoy working hard (unless it involves music or writing, then I’m all in), I never did well in school, never had a real day job, never felt like I did things the right or ‘normal’ way. Whatever that may be. However there is one thing I know that I have done very well: I have raised a happy and successful human being. I have given my son love, respect, education, humor and a shit-ton of really good, home-cooked meals. I have spoken to him as a peer. I have held nothing back. There are plenty of books on child-rearing which will tell you I did a lot of things wrong. Most parents would probably frown on my parenting choices. So glad I didn’t listen to all that static.

Such a strange thing that along with my greatest success also comes my greatest challenge: letting it all go. How do I do that? Elihu has been my partner for seventeen long years. Seeing him off into the world is going to be the single hardest thing I’ve ever done in my entire life. But it’s essential for my growth, for his too. It’s a mandatory part of the process. And once I’m past the fear, I know there’s going to be a lot of joy.

Because this next chapter of our lives is going to be huge. Major, in fact.

______________________________________________________________________

An update on the college journey:

With a GPA of 4.3, an extensive lists of personal achievements, fluency in four languages plus some pretty exceptional writing skills, Elihu and I had felt he had a fairly good chance of being accepted at the nation’s top schools, but it proved to be a surprise when he was rejected by all of the places where he applied (save Harvard, more on that shortly).

We both understand that this year is a unique one; with gap year students plus those forced to wait a year due to the pandemic, there are a whole lot more students vying for spots. At the end of the day Elihu has been accepted by RPI (Rensselaer Polytechnic Institute in Troy, New York) with a generous scholarship, but in that he attended two summer programs there – and it’s a mere 35 minute drive from home – he’d rather go somewhere new, different and a bit further from home. Plus his interest in liberal arts has really ramped up over the past few years, so he’s been hesitant to commit to a technical school.

He has been put on the Harvard waitlist, and he’s done everything in his power to distinguish himself from the crowd. He’s personally written to every administrator who might have a part in the final decision. Truly, he’s been tenacious. But in an unexpected twist, Elihu has been strongly advised by several mentors not to choose Harvard, even if accepted. They make the point that he will more easily rise to the top in a less demanding school, and that he can attend an Ivy for graduate work if it still appeals. Interesting input, and it will remain under consideration.

How surprising to us that at this late date Elihu still does not know where his future lies. To his credit he’s completely calm about the whole thing. Not much he can do. He’s done his very best, and now it’s just time to let the universe do its thing… Feel free to visit my Facebook page for updates. (We have been told that Harvard will respond with their decision by mid May.)

Stone Cold Busy

March 1, 2015March 17, 2015 Posted in An Ongoing Journal..., Low Vision Life, Mommy Mind, Pics, The Studio, VidsLeave a comment

From what I understand, the frost now reaches five feet down into the ground here in the Northeast. And as if things weren’t already taxing enough what with foot upon foot of snow covering every last rooftop and sub-zero temps occurring daily, now water mains are freezing, adding inconvenience to insult and injury. Thank goodness we ourselves haven’t experienced a loss of power or water on top of it all. I suppose we should count ourselves as lucky. And even though I might be the busiest poor person I know, once again, I suppose I should count myself a lucky gal to have a life filled with unending industry. After all, we still have food and heat and more than a few instruments around to play. So things aren’t truly dire. But some days, I swear it just feels like too fucking much. Some days all I want to do is to succumb, to whine, to moan and pound my fists on the responsible person’s chest, to get some answers, to get an apology for all this unending winter, my relentless to-do list and the continued lack of income… Just when I’m at my wit’s end, it does help to know I’m not the only one about to lose it…

Last night Elihu and I snuggled onto the couch, my legs on the table, his on mine, as we settled in for our weekly dose of Prairie Home Companion. The sound effects always make him giggle, and the anecdotes remind us of our life back in the midwest. Stories of fishing shacks on the ice, wide expanses of fields stretching out to the horizon, and people who speak using pinched, nasal-y vowel sounds (interestingly, the local rural accent is similar in many ways to the rural folks ‘out there’.) This week the program was centered around the host’s very same lament: an unrelenting season of cold that had gone on long enough. It made us laugh to hear his take on the ceaseless winter, and in some small way helped to make our own burdens a little easier to bear.

Earlier in the day we’d tried our hand (or feet, as it were) at snow shoeing. I’d only just tried it for the first time a couple of weeks back, and had enjoyed it so much I wanted to share it with the kid. He was excited – which is very rare for Elihu because he really does NOT like winter (Think bright, bright, bright. Headachey, hospital white all around. Exhausting for an achromat) – and so I jumped at the chance to get out in the woods with him. Out the trail we trekked, til we found a spot to don our shoes so we could go off trail. But that, dear readers, became a good twenty-minute process fraught with bindings that broke and straps that would not loosen, nor when finally loosened would tighten up satisfactorily. The whole thing was a comedy of errors, and I felt the clock ticking on Elihu’s patience. In the end, we bagged on the shoes and walked the trail to its end. Elihu asked where the wetlands were, and I told him they were at the end of a different trail. He was very disappointed. His expectation was that we had been headed there all along, and I apologized if I’d lead him to believe that. We took from this a lesson learned: identify your expectations up front. Not a total wash though, the woods were beautiful. The forest does look pretty in snow, I gotta say.

We’d had another miscommunication the day prior too. A friend had needed help driving to some errands, as he was without a car. He kindly offered lunch in return, but since my jam-packed day couldn’t allow for that, I suggested we do errands after school, and he made lunch into dinner. So when Elihu and I arrived at his place to find no one home, I panicked. Our friend’s not in great health, so I began to freak out. I imagined him on the floor, unable to respond. I began to wonder – just how do I dial 911 on my phone? It’s in a different area code – so what exactly do I dial? I made a mental note to figure this out just as soon as I got home. Without a smart phone sometimes things become tricky; over the next hour we made a couple of trips to the local library to use the computer so I could check Facebook. Again, nothing. Cold adrenaline followed us back to his house again. Poor kid was tired, and hungry too. He lamented not being able to go out for dinner. I knew it wasn’t a prudent move, but did it anyway. I took us out. Used the lesson money I’d just made – earmarked for the gas tank – and splurged. We had a good time, but the consensus was we didn’t need to go there again. Another lesson learned I suppose. When I got home I found out that my friend was fine, and he was upset with me for not getting his call. Double checked the log, no call was received. I was upset that he’d invited me, that I’d fit him into my schedule, I’d worried about him for hours, ended up spending money I didn’t have to spend, and then got scolded after the whole fiasco. My call log still shows no missed calls, and I don’t know who’s right, or what happened. Just another frustration on the list. I pray that soon clarity and peace come to my life. Because I am exhausted. (And broke, too.)

The things I’m doing these past few weeks – and the weeks coming up – are all important, necessary things. Costume and prop help for my son’s play (Six foot potted palm, check. Burlap sacks from the coffee store, check. Eleven tunics and sashes, check. Headscarves, check. Oversized gold coin for comic moment, check.). Mammograms and colonoscopies and appointments with arthritis docs, dentists too, for both me and the kid. Piano students to teach, rehearsals to attend. Trips to the feed store, the grocery store, the music store, the hardware store. Check-ins with the loggers, with the carpenters at the Studio, with the lawyer, the town clerk, the accountant, the county department of public works. I bought a computer in December which has yet to recognize the printer, let alone the piano keyboard. So it’s trip number three to the computer repair guy, this time with tower, printer, piano and cords all in tow (Windows 8.1 seems to be rife with problems). And then there’s this tuba in my living room which needs a case and a teacher to go along with it.

I’ve begun to fantasize about taking a vacation. I’m fifty-one and I have never once in my life had a real, stay-at-a-hotel-on-the-beach-and-do-nothing vacation. I begin to wonder if I am even able to sit on a beach for a week with nothing to do. Could I? I’m beginning to think I could. It’s not close to being an option, but I can’t shake the idea. I’ll bet it would feel great to step off a plane somewhere warm… My son sticks his face in the humidifier’s cool output, telling me that it feels like the air in Florida, only better, and says it almost makes him want to cry. I so get it.

This week is our hump. He’s got a lead part in his play, and I’m playing piano for the Missoula Children’s Theatre production at the local elementary school. Both of these things don’t usually happen at the same time, so it will be a tricky week for us. Lots of logistics. Me, I don’t like lots of stuff to do. I don’t like stress, I don’t like fast-paced schedules. Just gotta get through this week.

Yesterday Elihu asked the logger how much longer they’d be there, in his answer lay a great gem of hope for all of us in snow territory: Not much longer. “Why?” Elihu had asked. The logger explained that soon the ground wouldn’t be cold enough to support all that heavy machinery. In a few week’s time they’d be sinking into the mud. My kid looked at me. I couldn’t see past his big, dark glasses, but I kinda knew what was registering in his eyes. The fishing shacks on Lake Desolation will get pulled in sometime soon too. Here was evidence that things were not going to remain like this forever. And hard as it might be to envision now, all of our planning and building and fixing will one day come to an end too. We’re all just waiting it out, preparing for the big changes that are headed our way. Like the tiny seeds that sleep all around us in a bed of frost, we too contain the promise of a changing future.

It’s cold for now, but we all know that ‘now’ never lasts… And in this case, knowing that makes me stone cold relieved.

Elihu, tooting his own horn. Sounds pretty good for just a couple weeks.

He was kinda fatiguing here, but you get the general gist. Oom pah.

Off to see the cutting job in the woods. This is the main (and widest) of all five trails.

We run into John on the skidder, who offers Elihu a ride into the woods. Cool!

It’s a long way up!

There they go…

…pulling entire trees behind em.

Most of the remaining woods looks like this. Not bad for post-harvest. Also, they’ve cut in such a way that it will encourage new growth. Elihu or I may do this process again in another twenty years.

Some parts have remained more densely wooded.

But the main ‘road’ out looks a little open. The forester assures me it’ll ‘green back in nicely’.

Show shoes under his arm, Elihu makes his way over the waiting tree tops to the landing.

It’s impossible to fully comprehend how much power this takes. I mean, those are entire trees. !!

I get a little nervous seeing how banged up my ‘keeper’ tree has become through this huge loading process.

Onto the truck they go. This is all hard wood, and it’s going to Finch Prime, a paper mill in nearby Glens Falls. Folks, use your paper with respect and gratitude. I wish my trees to have been cut for good use. Sigh.

Small heart = Good wood.

Big heart = Not so much.

I like this pattern – I see two birds flying away at right…. However because of the heart it’s probably not worth as much.

This is what thirty-six tons of hard wood looks like. Hard wood is heavier, resulting in a smaller-looking load. Pine would have been stacked to the very top. (Either way, it’s safe to say it’s a lot of elephants.) Not a penny’s come in yet from the harvest due to the many tiers it must go through, and even when it does get here – it goes to mom first (it’s her property after all). She’ll be financing the rehabbing of the Studio from the lumber sales, and in turn the Studio (as a 501(c) 3 in the state of New York) can give her the tax deduction for her gift. I’m hoping a slight trickle down might aid us a little, but the Studio may turn out to be a bigger money sponge than I think, so if any cash makes it to us it’ll be a nice surprise.

Here’s the driver telling us this is a lot of paper here…

Checking in at the Studio. Took a previous day’s digging (not by me!) to access it.

Doesn’t look like much, but insulation’s in and drywall’s going in now.

There’s been some major settling – the carpenter thinks a heavy roof load of snow might be making things worse…

Yikes. Will have roof shoveled this week.

Storage will be a challenge. Live music and visual arts both require stuff. Not sure what we’ll do.

A quick visit with grandma (and cat Annie).

Mom goes through a photo album from the ’30s. Amazing the number of anecdotes I’m hearing for the first time.

Mom and dad found Annie on their anniversary, hence her name. Annie is the most kitten-like cat you’ll ever meet. It is, however, beginning to creep into all of our minds that she is now very old, in spite of her kittenish demeanor. She’s got some health problems, and is as light as a feather. I can see concern in my mother’s face when the subject comes up. It will be an enormous loss when Annie leaves us. (Her toungue is almost always sticking out. So cute, and so Annie. !)

At the end of a long, cold week, Elihu gives up just a few feet short of the back door and falls on his back into the snow. Hard to believe by the time he turns twelve it’ll all be gone. At least one hopes. !

Cusp

January 19, 2015February 2, 2015 Posted in An Ongoing Journal..., Flight, Growing Older, Low Vision Life, Mommy Mind, Pics, The Studio, Vids7 Comments

Two thousand fourteen was a tough year for me. Can’t say it was necessarily a bad year, but it was the year in which my father was newly gone, the year in which his concert hall suffered a flood (at my negligence; in order to save money I hadn’t properly winterized it), and it was the year in which I left the safety net of my part-time job at the Waldorf school in order to set about creating a new business. I did manage to get heating and cooling units installed in the Studio, and this past fall I spared no expense and had the place properly shut down for winter. At a glance, maybe not much. But progress, nonetheless. You might say I began to plant the seeds of change. And soon, we’re going to see them begin to sprout…

The biggest holdup – one that’s been in the works for nearly two years if you can believe it – is the logging of our family’s property. It’ll give us some start up money to get some basic fixes done to the place, not to mention a completely new floor (which still makes me sick to think of as the old floor was gorgeous…. and paid for) and some tlc on the weather-worn exterior. And besides that, we’re going to need a place to park all those cars. In the past, my parents only used the Studio in the summers, and parking on the expansive lawn worked out fine. Me, I’m going to need year-round parking, in a level place where I can clear snow and not worry about damaging the grass. Our plan is to create a parking lot in the woods just to the east of the building – in the very place that mom and dad had also initially intended for it to go when they built the Studio in 1974. Back then when they realized the cost – and saw that they had plenty of space for cars on the lawn, they shelved the plan. But now, needing access to my mom’s woods out back for the logging job, it’s become a perfect opportunity to kill two birds with one proverbial stone: the loggers need a ‘platform’, or a wide space in which to park their huge equipment, and I need a parking lot. They’ll open up the space whether we use it or let it grow back again – so why not use it to our advantage? The loggers will also need to construct a proper load-bearing road into the property, complete with enormous metal culvert and lots of fill – another structure which will benefit us tremendously. And then, on top of all this ‘free’ infrastructure, we’ll get money from the lumber. It kinda seems too good to be true. Knowing what I do about life, and how the best-laid plans can quickly go awry, I’m going to be keeping a close eye on every step of the process. (In a few moments I’ll take a break from my computer and go to meet the crew for the very first time. So that makes today hugely significant in the re-birth of the studio.) As I noted to my son recently, I was eleven when I saw the Studio built, and he, at the very same age, is here to see the Studio re-built. Perfect.

As usual, other adventures continue, and recently Elihu and I went to a rehearsal of Haydn’s “The Creation” by the Burnt Hills Oratorio Society at Skidmore College’s Zankel Music Center. We got great seats up front by the basses. ! I feel so lucky that this beautiful campus, along with all the cultural experiences it provides, is less than five miles from our house. Talk about the best of both worlds: peace, quiet and privacy with nature all around, and yet within minutes we can be hearing world-class music or dining at gourmet restaurants. Lucky are we!

Along with all the activity and changes going on in my life, I’ve added another to the list: hot flashes. A couple of years ago I got an IUD in order to deter the near-unending perimenopausal periods I was experiencing, and since they’d finished completely, I’d thought I was over the hump. Honestly, I didn’t think hot flashes would come til after the device was removed, if they came at all (my hope was to avoid them altogether). And now I suspect that after I have it removed one year hence, the hormonal change will descend on me with a vengeance. So this may only be the tip of the iceberg. My mother suffered badly from intense hot flash episodes for well over a decade. Even after hearing about them, I would still think to myself “It’s just a quick sensation of warmth. Really, how bad can they be?”…. Now I get it. Yeah, I’m guessing they’ll be mighty unpleasant. The first one hit at night, and initially it was not only uncomfortable, but it was frightening too, and in that respect reminded me of a miscarriage; some new variety of discomfort was growing inside me, and while it had familiar aspects to it, something very different was going on. A bit of nausea came along with it as well, and that was unexpected. But I suppose, like everything else in life, I’ll adapt and eventually get used to it.

These days I’m becoming more receptive to the idea that nothing lasts. I’m not resisting change the way I used to. Absolutely everything changes, and the sooner you surrender yourself to that notion, the easier your life will be. So here I am, standing on the edge of tomorrow, waiting for whatever comes next…

The other day Elihu and I marked off the perimeter of the Studio’s new parking lot with flags. This photo shows how things have looked for the past forty years on this stretch of Wilton Road, looking west. My parent’s property is on the left. Mom’s house, Andrew’s house and the Studio are all just behind these woods (that’s our neighbor’s driveway in the foreground).

And this is where the new driveway will be going very soon (that’s our neighbor’s house behind the big tree).Here’s the old salt box my folks put out in anticipation of the parking lot they never made. You can see the Studio’s white roof to the far left, beyond the woods.

This interesting-looking tree will go. Behind to the right (red) is the Studio, on the left is mom’s house.

Now we’re off to hear some music – and hopefully fly some RC helicopters too.

This hall both looks and sounds beautiful.

Best seats in the house!

Love the conductor’s red cowboy boots.

Just look how close we are to the bass section! (Note the C extensions on the necks which allow the bassists to play even lower.)

This singer performed at dad’s Baroque Festival years ago. Elihu’s music teacher from Waldorf is also playing clarinet in the orchestra.

Elihu has to say hello.

Kinda like meeting rock stars.

Proving true to his love of all things super-low, Elihu makes a beeline to the contrabassoon.

Hard to imagine I grew up with several of these in my house. Seeing or hearing a harpsichord always makes me nostalgic.

The house manager was sweet and opened up a classroom in the music building for us.

Lots of vertical room to enjoy!

After a slight mishap Elihu made some successful, on-site repairs. This pic may seem fairly ordinary, but actually, it’s not. Elihu is wearing his new tinted contacts here, and therefore able to see in the bright, natural light without sunglasses. A huge quality of life upgrade. He doesn’t wear them often, but when he does his world opens up.

Later on that night Elihu continued to be inspired by the afternoon’s concert.

And the inspiration carried over into the next morning.

After letting the girls (and boy) out for the day, I headed over to meet the forester and the logger who’ll be working in our woods over the next few weeks.

You can see the Greenfield hills in the distance. It’s a lovely view down my driveway, so long as I don’t look off to the right and see the vacant, new-construction house that looms over the field.

They’re here!

Assessing things from the road…

…and then from the interior of the woods where the parking lot will go.

These trees will all be gone soon – the ones marked with green tape will stay as feature trees.

Got the signed lumber contract in hand! It’s real now!!

Heading back home down my driveway. Feeling good, and excited for the days ahead.

November Pics

November 22, 2014November 23, 2014 Posted in An Ongoing Journal..., Birding, Elihu's Room, Farm Life, Growing Older, Low Vision Life, Mommy Mind, Pics, Waldorf Life2 Comments

Life’s been so full lately that I haven’t had time to archive my recent photos – plus my computer’s been in and out of the shop for weeks now, making a life sans-smart phone a tedious one indeed at times. I’ve had to visit the library a time or two to check my email. Makes me feel a bit like a vagrant, but I suppose it’s a good thing to be humbled every now and then. (Certainly helps me better appreciate the luxuries of a laptop and my favorite cozy chair.)

The changes all around us are imperceptible in the moment, but when I compare the images of this November with those from a year ago, my heart skips a beat to know how different things are now. For one, my father is gone. And now there’s a house at the end of our driveway, its windows staring straight into ours where there used to be nothing but a gentle field. We no longer have a goose guarding our home, and some favorite hens from our flock are gone. My son now plays string bass with some proficiency, and has finally experienced the freedom that tinted contacts offer. Plus, the kid is taller than last year for sure. (He’s still the shortest in his class, but hey, it’s all relative.)

Last night Elihu’s school had their fall assembly, in which each of the grades, from 1 through 12, performed. It lasted but an hour (that alone impresses me – the faculty has engineered the logistics beautifully) and it gave us all the things one expects in such a program. It had parents feeling proud, in love, in awe, and once again, in disbelief at how our children have grown so. Truly, it seems only yesterday that my dear Elihu sang in his first grade concert… And the other children, I watch them in amazement too, trying to understand this mysterious growing process that shows itself only in brief, acute moments. It’s a good thing that most of life’s big changes don’t happen all at once; myself, I like to have time in which to take things in, to figure out where things stand in the present, so I can move more mindfully into the future. But no matter how thoughtfully one approaches life, sometimes there is just no substitute for the perspective one gets in looking back.

And with that, I offer this rather lengthy pictorial retrospective on our month thus far…

Elihu brought his bass to the farm and played for Martha her favorite song, Simple Gifts.

The farm’s kitchen, the epicenter of my life since I was tiny. That’s mom on the left.

Mom helps fix Martha’s supper. This image has me pondering the plight of aging; my mother, whose own age is beginning to lessen her physical abilities, is the caretaker for Martha. Interesting the hazy lines between old and really old. Both of these women were superior take-charge gals ‘in their day’. Martha still, however, rules the roost, giving mom step-by-step instructions on how every last duty is to be carried out. Sheesh. Watching these two, dare I say, ‘control freaks’ in their late-in-life interactions is a good lesson for me: it is good to know how to delegate, but more important to let people help you on their own terms. Trust, I believe, is at the heart of the lesson. It’s hard to relinquish control, I get that. But aging kinda forces it on you. Best to be ready.

A quick smooch with Masie before we head out.

Our first dusting of snow. Beautiful, yes, but we’re not quite ready. Elihu hit his forehead and yelped ‘already?’ when he saw this. I swear he was close to crying. He’s not a cold weather kid. In fact, for some unknown reason, since he was very little he’s been telling me that he wants to live in Vietnam one day. ?? I love him more than anything in the world, but I don’t think I’ll be moving along with him. Naw. I’ll be in Italy.

Good weather for indoor tower-building.

The tallest one yet.

The Waldorf School of Saratoga Springs in the evening, such a cozy sight. Had a parent’s meeting, and thankfully, my son is now old enough that leaving him for an hour or so is possible. Hope when I get home he’s ready for bed…

When going in to say goodnight, I found a poem on Elihu’s desk. Turns out when he can’t sleep (which is every night, just like his ma), he writes poems in his head, then gets up to write them down before he sleeps. Has a bunch of them apparently. !

Downtown there’s a makeshift memorial on Broadway for Saratoga’s Banjo Man, Cecil Myrie. The day after he died I posted the photos and obit on the lamppost – within hours people had added balloons, flowers and candles as well as assorted trinkets, including cigarettes, banjo picks and a fireman’s hat.

The look of town has changed rapidly over the past decade, but local folks will recognize these three Saratoga homes, untouched by progress. Seriously, they looked the same in the late 1960s as they do in this 2014 photo. Feeling as I do about change, I relish this image.

We’re giving our young Buff Orpington rooster away to a new home soon, so he’s enjoying a final visit to the kitchen.

Goodbye, handsome fella! (The bird, that is.)

Nice to see this Red Bellied Woodpecker again this year (a confusing name when it’s really its head that’s noticeably red). Took this from across the room as he’d spook if I got close.

Today we’re going to visit our old goose, Maximus at his new home across town (we’re also giving them the rooster seen above). This is a special morning, so it requires a special breakfast. I surprised Elihu with a pancake in the form of his signature cartoon character, Stanley the Tree Sparrow.

We’re at the gate – and can hardly wait!

I stood and watched in amazement. The flock was free to escape this bird-crazy boy, yet somehow, Maximus did not flee. In fact, he allowed Elihu to get close…!!!!

“Family” selfie. Miss this guy. It’s such a good feeling to smooch a goose. Elihu and I can smooch a chicken and eat a chicken too – the same one, in fact – but we both agree that goose is off the menu for us both now. It just feels different.

They go for one last run before we leave. Max is happy here; he has a pond, lots of open acres in which to roam (note the yak in the background!) and finally, Max has a girlfriend. He has a great life here, so that makes us happy too.

And a final smooch…. for now. See you again, Maximus!

Back at the Hillhouse, giving some love to the king of the roost – and our only resident rooster now – Bald Mountain.

Eyes wide open (indoors, with no lights on), showing me what ‘perfect hair’ looks like. Right on.

Okay, seeing Maximus was special. But this is in a whole new realm of special. These babies ($600 after all was said and done if you can f*ing believe it – they’re just goddam soft contacts!!) are about to change Elihu’s life…

An ordinary picture, right? Look again – this is Elihu, eyes wide open, outside, WITHOUT his dark red sunglasses!! This moment, humble and ordinary as it may appear, is no such thing.

Elihu, about to join his classmates at school for the very first time without dark glasses, is overcome with emotion. I thought I was taking a picture of a smiling child, when he began to sob. You can see the feeling beginning to dawn on him in this image…

He joins his friends on the foursquare court and waits for someone to notice…

Yes!!!

He’s still squinting a bit (he’ll need some supplemental dark glasses for outdoors), but finally Elihu can open his eyes outdoors. Whew!!

I take a quick peek into his classroom to make sure things with the contacts are still ok…

Elihu wants to visit the music store after school with his new contacts in…

We love the use of glockenspiel in some of our favorite polkas. I wouldn’t mind a set of these myself, even if I have no current use for them…

We love this place. I try to make sure he’s not the annoying kid… but he enjoys trying things out for a spin. It is a great opportunity to get an understanding about how different instruments – and different setups – can feel.

Singing his heart out. He’s been looking forward to this performance for weeks. And again, no dark glasses. A new world for him. Can’t help but think back on his first grade concert… He sang his heart out then, too.

The sixth grade does a eurythmy performance. Eurythmy is the art of sound made visible, and is an important part of Waldorf education. (That’s my little eurythmyst on the far left. He was so psyched to finally be doing his performance in costume.)

And this is Elihu, ending the number and leaving the stage with a flourish.

This act is over, and now a new one begins…

Bright Eyes

August 13, 2014 Posted in An Ongoing Journal..., Low Vision Life, Mommy Mind, Pics, Vids4 Comments

When Elihu was teeny – just barely a toddler – I’d take him to a home daycare in the northern Chicago neighborhood of Rogers Park for one day a week so that I could catch up on domestic chores and in general have a couple of hours off (his father wasn’t around a lot as his teaching job took him out of town nearly half the week, and gigs often took up the remaining days). Miss Loretta, the gal who ran the place, was a tall, grand black woman who appeared a little daunting at first; her large ponytail and huge frame towering over us as she stood at the top of the stairs to her front porch waiting for her charges to arrive. Although she could be all business at times, she could also be the sweetest, most caring woman. She had nicknames for some of her favorites; babies whom for some reason or another stood out from the rest. What with Elihu’s eyes and bizarre vision issues, you can be sure he was in that population. And I’d always kinda liked that Miss Loretta had called him “Bright Eyes”; it had a charming, hopeful quality to it. It wasn’t derogatory, it didn’t sound sinister, yet it recognized both Elihu’s challenge and his beautiful spirit all at the same time. I liked it. “Well hel-lo, Bright Eyes!” she’d greet us each Wednesday morning in the open porch door. Once inside, in the dark wood paneled interior of her living room, he must have felt safe – I know that as a mother, my heart filled with relief the first time I saw it. With a child as light-sensitive as mine, it just wasn’t possible to leave him – much less bring him – to many places. (Another reason for the weekly visits; we two hardly ever got out – the world was just too bright.)

Bright Eyes passed a year of his life visiting Miss Loretta, and I think about her from time to time; I wonder if she’s still in the business of tending to a house full of tiny children and babies. I wonder if she ever thinks about her kids, and where they are these many years later. Next time we’re in Chicago, we’ll have to pay her a visit, because’ Bright Eyes’ now has a whole new meaning, and I think she’d be very pleased to see it for herself.

—————————————————-

Here we go… off into a brand-new era. No kidding. The world has opened up to my son. Hope begins to grow, as does a new realm of possibility. It’s just the very beginning of the journey. Ironic that through Elihu’s dark tinted contacts he can now see a brighter future. ! You go, my beloved Bright Eyes!

Before our visit to the eye doc.

These might help Elihu’s vision to shake less. Jury’s still out on them, but they do offer something worth checking into more thoughtfully at a later date.

The BIGGEST moment of his life so far.

Back inside with the contacts in and the shades wide open. He can’t get over it. I can’t either.

_________________________________________________

Our most heartfelt thanks go to everyone at Family Vision Care Center in Saratoga Springs. They had no ego issues, there was no battle for control, they simply rose to the challenge and helped us out. They’ve listened to our needs and responded to them. We couldn’t find anyone else in the area to be so cooperative, proactive and upbeat about it all. We love everyone there!

May Daze

May 9, 2014May 9, 2014 Posted in An Ongoing Journal..., Birding, Farm Life, Low Vision Life, Mommy Mind, Pics, Waldorf Life3 Comments

Elihu asked me last night why I often say that ‘when we get past something’ we’ll be alright… He wanted to know why I’d say from time to time that we’d be ok once a certain event, a certain time or a certain holiday was over. “Like Christmas, you kept saying ‘We’ll be ok as soon as we get past Christmas.’ Why do you keep saying things like that? What exactly do you mean?” I hadn’t realized my offhand remarks had made such an impression on him. It gave me pause for sure. I wanted to learn from this, yes, but at the same time I wanted him to understand my point of view too. “It’s just that we hit these super-busy spots in the year, and I just can’t keep up. I can’t keep up with the food, the laundry, the work. And it gets harder when there’s more to do.” He understood, but warned that my comments didn’t sound as benign as I was making them out to be. Wow, I do really try to keep from getting too dark with him, but he’s a sharp kid. He gets my meaning. And again I wonder, is it just me complaining? It can’t be. I’m not that crazy-different from most folks. I like to flatter myself into thinking I might be, but I’m pretty sure I’m not experiencing anything that out of the ordinary. Or am I? After all, there is no partner to tag-team with, no one else to step in for a minute, no one else to make it happen. Ok, yeah, so there’s a lot to do. But I’m not the only single mom here in this world. I just express myself without much editing, I guess.

This past week Elihu has felt it too – it wasn’t just me feeling the overwhelm of a busy, end-of-the-school year rush. There has been a lot going on recently in a very short amount of time. And today, Elihu got it. After being patient and good for an hour long appointment at the eye doctor after school, he finally broke down in tears. “I’m SO tired” he moaned, and pushed his face into my shoulder. But he’d made it. Me too. Still have another couple weeks of recitals, performances and then the big pentathlon event for the fifth grade, but most of our landmark events were past now. And we enjoyed them all, every moment. But we’re kinda zapped now. As I write, he’s relaxing in his bedroom, organizing his collection of Pokemon cards, and I’m sitting here wondering what in hell I’ll make for supper. But this is a mere blip on the screen in view of the two huge, life-changing events that happened just today: Elihu learned how to ride a bike!!!! And what else? Get this – Elihu learned how to put contacts in his eyes!!!! We’re on the path to tinted contacts – something that will radically change his life forever. These two landmarks have us elated, proud, relieved – and ready to collapse. This is one May we will never, ever forget. We’re definitely in a daze tonight, but man, it’s a happy one.

Going back two days (feels like two months ago by now) to a window on my birthday morning. Guinea fowl Austin on the bridge, our beloved flock below and Ace’s sculpture “Mayfly” to the left.

Hey, we had the garage cleaned and painted last year, why the splotches of mud??

A-ha! Our friends the Phoebes have returned and once again made their nest atop the garage light. Ah well, we can always wash up the mess after the babies are raised and gone. So very glad you came back! Nice to see and hear you again. Now I think this is a very sweet birthday present.

Here was another sweet birthday experience… I got to write and play music for the eighth grade play. Mr. Ruel introduces “Tuck Everlasting” to the Waldorf students in the charming theater space of the local Episcopal Church, Elihu is in the dark hair and shirt in the center.

Jessie explains the magical properties of the spring in the wood, and its awesome implications.

Angus Tuck tells young Winnie “I just got to make you understand” as he explains the dangers of living forever.

A climactic scene in which the tension rises and the play takes a turn.

Well done, eighth grade!

There’s been a delay with the carpenter… still hoping this job will be history soon.

What a perfect birthday present from mom! The name says it all too! Finished with washing dishes by hand soon!!

A quick, late-night trip to Stewart’s to grab a birthday cake for myself. Yes, I ate both of them. !

The next day starts with a double smooching of chickens.

Dinah and Thumbs Up share Elihu’s lap and really seem to like it there.

Now it’s time to go to the gig. Elihu regularly donates the proceeds from his Eggs of Hope sales to Drilling for Hope, a non profit run by local woman Karen Flewelling. She asked Elihu if he’d play drums for the opening night of “Faces of Rwanda”, a collection of gorgeous black and white pictures taken of Karen’s last trip by photographer Emma Dodge Hanson. Twins (and classmates) Jonah and Phoenix join him here.

This is a photograph from her recent trip to Rwanda of villagers drilling a new well.

Pics of donors and the Rwandan children that they’re helping to send to school.

We looked and we looked and yay! We finally found our friend from so far away! Hopefully we will be sponsoring this very student in the years to come. Wow. I can’t believe we’ve been able to help someone else here on the planet. We, of so very limited resources are absolutely rich in the world-wide scheme of things. This helps to keep things in perspective for sure.

Classmate Ben helps Elihu find his picture on the big wall at the exhibit.

Karen says hi to Elihu; he just made another gift to Drilling for Hope to help Karen do her wonderful work in the world.

The view from my post most of the day: high school eurtythmy class. They’re in costumes now, getting ready for the big performance at Zankel Music Hall at Skidmore College next week.

After my high school classes are done for the morning, I rush over to the Lower School to see how Elihu fared. And just as I got out of my car and pulled out my camera – who should come riding up on his bike (a thing he could not have done only a couple of hours earlier) but my amazing boy!!! Talk about a surprise!!!

And just as effortlessly as he rode to me, he then promptly rode away. Sigh.

The sanctuary of an empty, fifth grade classroom, pre-lunch.

And the same room moments later. All are in a good mood.

After lunch I get to hang out with the kids for a bit as I’m on yard duty. Our equestrian friend Cally (who’s also an incredibly talented singer) smooches a home made horse doll and lil first grade buddy Tylor admires a beeswax figure Elihu’s working on.

Now we’re visiting a new eye doc in hopes she can be a little more proactive in getting Elihu red tinted contacts. It’ll be new territory for her. She was very kind and positive. We’re hopeful…

These have a crazy, futuristic Harry Potter-esque vibe – maybe even a little Brazil-esque feeling to them too (yeeks). Elihu’s trying out some mild prism glasses here to help him find the null point in his nystagmus (shaking of pupils).

The doc’s assessing Elihu’s ability to read – hard to know if his vision challenge is a product of light sensitivity, acuity or both.

Assistant Jen shows Elihu how to put contacts in his eyes.

Here he is – with contacts in! They’re not tinted, they’re just to give him an idea of how it all works.

One more spin around the park. (The bike was a gift from the local program “Bikeatoga”; thanks guys, we so appreciate it!) I told Elihu ages ago that riding a bike was the closest thing to flying that he’d ever know. Today he laughed and said I was right.

May we remember the feeling of this special day in May for years to come.

Scare

January 10, 2014January 10, 2014 Posted in An Ongoing Journal..., Growing Older, Mommy Mind5 Comments

“What happened to your fingers?” one of the eighth grade girls asked me today as we stood chatting and waiting for the teacher to arrive. It was more than the uncensored nature of youth that allowed her to ask me without first editing her thoughts (or her surprised tone) – I’d spent some time with this class accompanying them at several performances, so by now they felt pretty familiar with me. While her question initially stopped me in my tracks (I kept my cool in spite of it), I appreciated the candor of her question, because it confirmed for me that it wasn’t all in my head… I’d known it was bad, or at least not good, for a while now. In fact I’d even heard slight gasps from my adult students in class last year when showing them the hands that had just demonstrated something intricate on the piano. There had been a slight pause in the room as people began to reconcile the music they’d just heard with the hands they now saw before them…

The nodes on the distal joints of my fingers can’t be ignored anymore – certainly not be me, nor by folks I meet for the first time. They are large, they are painful, they get stuck in between the black notes – and they are not getting any smaller. Just this past week I had a painful day of great sensitivity on the fourth finger of my left hand, and the next day there it was: a fresh, new node. A newly deposited growth of bone, I suppose, from what I’ve seen and researched online. Just about a year ago I’d gone to an orthopedic doc, before it had gotten terribly bad, and I was more than disappointed to hear him tell me there was basically nothing I could do about it. There were some drugs I might take, but they had a lot of potential side effects which probably weren’t worth it, he advised. I’d been prepared to hear something like this, but it was quite disappointing even still. I mean, come on. Everybody and his brother has arthritis and has for as long as we can remember – and I still have so few options? Seriously??

As a young adult I can remember looking at my mother’s hands and thinking that the distortion in her fingers was almost unbelievable. As if she certainly must have done something to have earned them. Knuckles don’t just blow up like that unprovoked, do they? Well, no matter who or what was responsible, a fate like this was certainly this poor woman’s cross to bear, but thank goodness, I’d think confidently to myself, that’s not my future. I’d even had such smug thoughts knowing damn well that while I do get my musical talent from my father, I look not a thing like him. No. Rather, I look like my mom. So here I am, at the start of my fifties and my own beloved hands are blowing up like those of an old peasant granny. For heaven’s sake. This is so not me! Come on guys! I beg my hands. I love you guys! I appreciate you guys! Why are you doing this? Why? I plead with them, even kissing them like a mother would her child. But onward they go, their shapes morphing almost as I watch; the minute, intermittent stabbing sensations and dull, hot pain confirming for me that things are, in this very minute, continuing to get worse. I’ve cut out wine. I’ve cut out acidic foods. Dairy. Salt. I read, I Google, try something else. I drink water. I try to think positively. But my fingers respond to nothing. My disease is progressing without my consent, and I am sad. Scared, too.

It’s a dull, ever-present sort of scared, it’s one I can live with. But there are other insidious types of fear that I find have been making headway into my life of late, and I don’t like it. I might be able to live with them too, but I sure as hell don’t want to. I may strike people as a strong woman – and some days I might agree – but I can feel that it’s becoming a bigger challenge these days to keep it together. Panic has resurfaced over the past year, chronic concerns over money feel even more real as my own aged years loom closer (and I have not a penny saved), and then of course there is always the concern for my son. His vision, his ability to participate as fully as he can in the world, and of late, I worry about his having contracted Lyme disease. We’ve begun his treatment, and docs assure me that in a young and vigorous kid like him, he’ll have no worries later on. It helps, but angry emails from his father telling me that I “need to take this seriously” as if somehow I do not, and telling me I might have been more vigilant when I in fact had been worried but hadn’t had him checked yet, this all makes it much worse. I don’t know how my ex still has such power to hurt and frighten me…. I summon my focus and I stand up to him. Right after, I beg my son in my heart to forgive me for not knowing, for not doing something sooner…

Tonight Elihu asked me to please stay and read to him. He said he was feeling ‘needy’. I hadn’t given him a lot of one-on-one time lately as I’d had too much life to deal with. Music to learn, house to clean, food to fix and such. Tonight, we agreed on a trade. If he’d let me just organize the mess in the kitchen – get it squared away just a bit – then I’d come in and read to him. I did, and shortly after I began to read we both started to drop off. I turned off the light and soon fell deeply asleep. The next thing I know Elihu is feeling for me in the dark and muttering something. He, like me, is a sleep-talker. He can even hold some conversations in this state, so at first I wasn’t concerned. But this was different. He reached out to me with outstretched arms, which I took for a hug, but he shook his head. “Machine” he said, pointing to his nebulizer. Can you imagine the shot of adrenaline that flashed through my body? I immediately got a packet of medicine, poured it in and gave him the mouthpiece. He looked drunk. After a few puffs he laid back down. I yelled his name and shook him – “Are you ok?” He waited for a moment, then nodded no. “This is different” he said through closed eyes. “Do you need to go to the emergency room?” I asked. He nodded yes. “Yes, emergency room” he said, again his head drooping to the side. Holy fucking shit. White hot fear coursed through me and my heart began immediately to beat as if I’d run a race…. I thought back to a panic attack I’d experienced earlier that day. It was a close second, for sure, but man, these stakes were mind-bendingly high… I ran through the house, pulling on clothes, locating his rescue inhaler, my boots, keys, a blanket to wrap him in…. I came back and tried to tug a sweatshirt over his head, but he fell limply to the side. Holy shit, holy shit, keep moving… I was thankful that the ER was just about five miles away, and we could be there in less than ten minutes. Lucky…. “Elihu!” I yelled at him. “What?” he finally responded. Then a look overtook him, and he sat up, eyes fully open, as I tugged the sweatshirt down around his neck. “What are you doing, Mommy?” he asked. “We’re going to the hospital – to the emergency room! You said you needed to! Can you breathe now? Are you ok??” He shook his head and fell back down on the pillow. “No, I wasn’t waiting to go to the emergency room. I just wanted a more comfortable pillow.” He lifted his head up and I inserted the down pillow underneath him. He plopped back down onto it. “Honey, are you ok? He nodded. My heart was still pumping loudly, and I wasn’t convinced. But I realized that he was still deeply asleep, and that while he may have needed help with his breathing, it wasn’t as dire as his sleep-talking self had said. Oh my God, I kept thinking over and over again, the prospect of a life without my beloved son flashing uncontrollably, nauseatingly, through my mind. My God, I think, and I my face sinks into my hands. Holy shit.

For the most part, I’d say I’m a glass half-full gal. Might not always have been, but I am now. Only I’m not sure if I could remain so if I were to lose my son. For that matter, how will I feel about that glass when I can no longer play the piano? Many times I have thanked the universe for all that I’ve been blessed with. Even the unexpected divorce and all the unforseen events that followed. It’s all been one unpredictable adventure from which I’ve learned so much more than I ever would have otherwise. If I hadn’t once been scared shitless, I wouldn’t be here now. I remind myself that fear has its place. But truly, I don’t think I need any more. I’m good. I don’t want to have to find out if I do or do not have it in me to live through a tragedy. Please, universe, don’t try me. I’m good with things the way they are. And I aim to make things better, too. I aim to get my son tinted contacts this year. I aim to teach him how to ride a bike, to make dinner on his own. We still have so much more to do, I have so much more to teach him. Let’s just get through this night, please, I beg anyone who might be listening. My right index finger hurts, my head hurts. I am emotionally weak just thinking of yesterday’s new run-in with panic. I am scared. But I remind myself: I might be scared, but I am strong too. Posturing though it might be in this moment, as the adrenaline begins finally to subside, I challenge my fear. I tell it we’re done for the night. Running in to check on my son every few minutes as I write this middle-of-the-night post and finding him in a comfortable sleep, breathing nice, even and deep breaths, I begin to take back what power I can. I tell fear to leave us alone.

Soon I think I’ll get to bed myself. One more check on Elihu, one more set of good, deep breaths and I’ll lie down.Man, I sure could use a rest after all of this… And I’m pretty sure being brave may well require a good night’s sleep.

The House Cafe

September 21, 2013 Posted in An Ongoing Journal..., Divorce Diary, Low Vision Life, Mommy Mind, Pics2 Comments

It was a time in which I learned an awful lot, and it seemed everything was happening all at once. It was a time which, while an important chapter in the course of my life, would not be one I’d ever care to repeat. I had three things weighing heavy on my heart: first was my son. Each day I’d drop off my special-needs, vision-impaired son at daycare and would remain in a state of low-grade guilt and discomfort all day as a result. I would rather have been with him, but it just wasn’t possible as now I had a new full-time job, item number two on the list…. I was the owner and manager of The House Cafe. While more my husband’s dream than mine, he already had a full-time job, so this role became mine. Truly, it was no mere coffee shop, rather it was a restaurant and a nightclub. Live music six days a week, a liquor license, food to order, store, inventory and prepare – and college-aged employees to get most of it done. And then there was item number three: my marriage. A union of over twenty years that was fast dissolving into thin air right before my eyes. It was profoundly frightening, Each day I felt as if I were walking through a horrible, waking dream, yet I had absolutely no time to deal with it. I was so busy, in fact, that most times I told myself it was just the stress of the job; things were just temporarily off course. One day things would be back the way they’d been. That’s what I had to tell myself in order to get though. I had left my familiar and beloved life behind in Evanston and had hit the ground in Dekalb running at breakneck speed, but it was still my greatest hope that a peaceful family life lay somewhere ahead.

Having just set this up as a rather dark piece about a difficult time and a challenging job, let me now elaborate a bit upon what it was that made this experience so rich. As I once wrote – in my very first piece ever on this blog – I experienced a range of events in working at The House Cafe that I might have expected from a decade of management, not a mere two years. Some were terrible to live through, and some were very rewarding. Employees were for the most part intelligent kids with humor and good sense (not all of them, but most) and I loved to know that we ran a place that was comfortable and inviting. That it was a place in our small town where folks of all types could meet and hang. We had a toy box and couches, rotating installations of local art on the walls, we had a bright area up front, and cozy dark booths in back. Even four bathrooms. During the daytimes it was moms and tots and students studying, by afternoon it was the bands loading in. The place radically changed character at night – and frankly, as a mom to a little one, I wasn’t able to enjoy the shows too often. Sometimes I wouldn’t really want to; when the kids lined up around the block and down the hill I knew we’d be in for a heavy-hitting night. More than once I’d have to pack tiny Elihu in the minivan and stop by the club to tell the booking guy he had to close the doors. I know it was tempting for him (cuz he got paid by the head count) and it was tempting for me too to want that extra income – but we just couldn’t go over capacity. But as a business, you gotta admit that’s a pretty good problem to have!

I remember young Elihu – at the age of just four – helping me test mics before a show. They were clearly numbered, and he certainly knew his numbers, and he felt quite comfortable picking up a mic and speaking into it… so one by one we’d make our way across the board getting things ready. It was a large room, and in the evenings could be quite dark and cozy, so he was able to run around free from his usual super-dark sunglasses as I finished preparing for the night. Checking the sandwich line, the stock up front, the state of the green room downstairs. By no means did I run the place as well and thoroughly as I would have liked, but I feel I muddled through as best I could in my situation. Thankfully I’d had years of experience waitressing and playing clubs, so that helped. But nothing prepared me for the experience of being stolen from by employees, by being yelled at by employees, by being told by the health department that I had to make improvements which I had no money to make, or learning I hadn’t enough money on hand to pay the musicians (this is the last thing I should ever want to do to a fellow musician!). Or finding that I needed to keep an inventory of every last thing in my storage closet lest my toilet paper mysteriously disappear. Or that pictures would be stolen off of walls, furniture would be broken, expensive microphones would routinely walk off and vomit would end up in the bathroom hallway at least once a week…

Of several memories, there is one I particularly like to recall. I’d been up front one late afternoon, working with the baristas, making coffees and sandwiches for a busy house, and had begun to make the rounds with a large plastic tub, bussing the tables. A local Dixieland band was playing, as they did one Sunday of each month. We’d just made it through the lunch rush and now things were settling down. I was in the zone of cleaning up – finding my groove and feeling good about a happy, successful day. I was lost in my thoughts, but was awakened from them when I’d heard my name spoken. I looked up, and saw that I was being called from the stage to join the band for a song. It was a Cinderella moment as I set down my load of dirty dishes, took off my apron to reveal a dress beneath, then pulled the pencil out of my udpdo and swung my hair loose. I walked up to the stage (a nice, raised stage complete with lights and a real grand piano – the one that now sits in my living room) and with only a couple of quarter notes to spare, started singing. Life at The House was seldom as picture-perfect as that moment, but it’s a nice one to have that one in the memory archives.

While I didn’t do the booking myself, I could – and did – suggest bands to have play. Sometimes I got em, and those too were happy events. It was enjoyable to now be the host rather than the guest, and to make performers feel at ease, taken care of. I myself made an effort not to engage with them too much, because for me as a performer I’d always wished for more space. And with my ex and other folks through the years I’d seen the relentless, in-your-face sort of presence that fans had. I know it goes with the territory, but I still thought it was important to make privacy available. When I was present, I think I did ok. But even though I was in that office from 9 to 5 each and every workday – weekends too – I didn’t have much of a presence in the place as a nightclub, as I was at home being mom. In hindsight, I think it all worked out. Wasn’t exactly as I would’ve liked, but it was ok. Like I said, I learned a lot.

After about two years though, I was reaching the end of my rope. I had wanted to turn my attention back to family matters, and I began to think about finding someone to replace me. But who? The universe must have felt my plea, for one day the phone rang. It was a woman who was just cold-calling us to see if we had work. She had lots of experience as manager of a coffee shop, and she lived in the area. And she was done with her last job, as in done. Like me, she’d had it and was seeking out something new. Strangely, I had time in my day, and she was only miles away, driving towards the place as we spoke. Within minutes she entered the office, within an hour I had a new manager. Within six months she owned the business. Finally, I was free. Jan was an angel to me at that time; she arrived just when I needed her, and she continued to not only run the Cafe in the same spirit as before, but she improved on it, making it into a Midwestern mecca for the college and patchouli crowds. Perfect. Even my twenty-something year old schefflera plant – now a good ten feet tall – stayed on to live and thrive in the Cafe. I made my exit feeling very good about The House Cafe’s future prospects.

Now, after some five years of Jan’s ownership, she too is wanting to move on. She, like me, is a single mom of a young boy (I think she even has chickens!) and I can’t blame her for wanting out. Running the place is a way of life. And for the most part, running a locally loved, well-established meeting place for the community can be very rewarding. Yeah, it feels really good to welcome regulars and get into a daily rhythm. When things are in place, it’s a good place to be. But no one can stay in one place forever, and so now The House Cafe of Dekalb is on the verge of yet another change. Jan’s leaving at the end of October, and the future of the place is very much in question. As I signed off on all aspects of ownership in the process of my divorce, I don’t know the particulars anymore. But I do know that this is a beloved landmark of that community, and I have my own personal hopes that another angel arrives just in time to save it.

The House Cafe of Dekalb, Illinois

Calling It A Day

August 17, 2013August 18, 2013 Posted in An Ongoing Journal..., Low Vision Life, Mommy Mind9 Comments

As I write this Elihu is downstairs playing his drum set. It’s interesting to hear him work out new ideas. I’m impressed with how long he’s been at it now; it’s been at least forty five minutes since I retired to my room to put away the laundry (I think it’s evident that’s not getting done) and he’s come up only once to make sure that I’d heard something new he’d been playing. I assured him I had. Earlier today he busked a bit on Broadway and again I heard new sounds. He’d played downtown on Thursday night too, and I was amazed that to hear how much better he was playing these days and how many new ideas he was coming up with. Cuz seriously, how much variety can one get out of one single drum? Quite a bit, apparently. And now, in the spirit of a summer night with no reason to get up early the following morning, Elihu is enthusiastically enjoying en extended practice.

Today the weather was just perfect with a late summer day’s breeze and softening sun. For me this is the time of year that evokes a certain sadness of things about to be gone by; although the daytimes are still distinctly made of summer, the evenings have a certain cool to them that signals the changes that are coming soon. Tonight, to the soundtrack of fireworks from a neighbor’s yard and the crickets in the nearby field, Elihu chased frogs and watched the goldfish in the diminishing light of day. The evenings now have grown too cool for shorts, so I wrapped myself in a long fleece bathrobe as I watched him play after we’d finished eating. Earlier, as I had made supper, I’d watched him from the kitchen window as he transported frogs from the creek to the new pond. To watch my son play as I cook or do the dishes is something I don’t take for granted; these are no doubt some of the tiny memories I will conjure decades from now when I can hardly remember ever having a young child.

But as the night grows later I begin to think about the school year that’s coming soon. It’s getting later than I’d realized. He’s finished with the drums now and has returned to his post at the pond. I wonder if I should call him in. Soon we’ll need to adjust his schedule back to reasonable bedtimes and super-early mornings. A late night like this makes me wonder if I’m being a negligent mom. But I have my reasons for allowing him this extended play… Given Eihu’s achromatopsia, I understand so well why it is that enjoys playing at night more than during the bright light of day. He’s finally free of those stupid sunglasses, finally able to see his world as it is. While I myself cannot tolerate the ubiquitous mosquitoes, for him it’s a price he’ll easily pay, for the reward is great. I however can’t give him my audience anymore on account of both the chill and the insects, so I leave him to his own. As I sit and write, he comes in every few minutes to update me. Now he’s rediscovered an old glider he’d made once out of foam core and cardstock. He’s rummaging around in the junk drawer to make some adjustments to its weight. He’s having luck with his project, so I’m still hesitant to put an end to it. But a few good tosses of his plane and I think I’ll have to get him in.

This has been another wonderful day. We might not remember all of it, but we’ll definitely take away a few late summer memories. If not for the acupuncture appointment that Elihu accompanied me to this morning, then maybe for the visit to a friend’s house that netted him a vintage helicopter toy. And if neither of those stick, at the very least today will have been one of many fine summer days that help to create the overall emotional shadow of a very happy time in his life. Yup, it’s been another very good day, and I think that now we can finally call it a night.

June Interim

June 22, 2013June 22, 2013 Posted in An Ongoing Journal..., Farm Life, Low Vision Life, Mommy Mind, Pics5 Comments

As usual, there’s too much to do, too much to post about. But the tiny moments are what give our life its shape and color, so whether it’s newsworthy or not, I’m going to post an assortment of photos from the past week. From busking on Broadway in Saratoga to loading up on grain at the feed store and much in between, we keep ourselves busy.

Thursday was the first day of summer, and thankfully, after incredible amounts of rain lately, the weather was classic summer – with a bright blue sky decorated by random wisps of cloud, all at a perfectly comfortable 75 degrees. Elihu and I made the pilgrimage to Arnold’s Feed and Grain in an effort to both cut our costs and use locally grown grain to feed our flock. We had a lovely drive and stopped several times to admire our surroundings. On the way, we also stopped at the nursing home to visit Ace, the sculptor of the beautiful pieces that live in our garden. On the way home we found our road dead-ended at the local airport! This was too good to pass up, so we paid them a little visit too. When we got home we worked some more on our garden, then passed the evening watching the lightening bugs and jumping on the trampoline in the moonlight.

Elihu absolutely adores Austin.

Grandma says hello

A quiet moment with Maximus

Skin and feathers, all so soft

Later on Elihu plays recorder for Max

And then plays a game of tag with Austin. (See where Austin went?)

The Zen process of dishes. Must spend an hour and a half in dish-related labor each day. !

The blooming Locust tree branches pretty up our kitchen

A spent bottle of shampoo? Huh? Well, it’s only after five years here that we’ve finally used it up. (Yes, Elihu does wash his hair regularly.) A few years ago I took some comfort in this bottle having come from…

Skokie, Illinois!! I’m over it now.

Boy’s play – outdoors

Boy’s play – indoors

And boy’s play – on the street

4:20 somewhere…

One of those ‘quality of life upgrades’ – a bolt cutter. Everyone should have a pair.

The garden at first, with landscape fabric (a week away and I’ll lose the place to weeds if I don’t use it)

And now draped with Remay – a miracle poly cloth that protects against critters. It doesn’t look as romantic as a natural garden, but it works as a fence and is our greatest hope this year. The bolt cutter was used to cut the wire hoop frame underneath.

Sank up to my knees several times – actually panicked for a moment. Sticky stuff!

What resort is this?

It’s the private rooftop club at the Hillhouse! And here’s the rest of the view… garden, trampoline, apple tree to left. Note how our yard descends down the hill; it has three different terraced levels – including more yard below the garden.

Elihu loves Irik a lot, but we need to find him another home soon… Three roosters is two too many.

Peek a boo! This guy is part Jersey Giant, and he is the biggest chicken we’ve had yet. And he’s got feathered feet too. Cool.

Ace’s bird…

And Ace himself!

Love that Ace was wearing an ace, too.

Off to the countryside to the feed store. This is a magnificent view looking west across the mighty Mohawk River valley to the other side. Elihu can’t see well or far, of course, but somehow this vista got him – he really understood the distance it represented. He even saw that tiny puff of a tree on the ridge! Made me SO happy. This is not an average occurrence.

I got some binocs that work particularly well with one’s glasses on – and BINGO! Now he can see birds and views…

Mecca!

A good third less than at the commercial Tractor Supply. Plus it supports a local, family-operated business. Even with the gas, it was a big savings. Now we’re all stocked up.