Category: Low Vision Life

The world of a boy with Achromatopsia who sees no color, cannot tolerate light and sees little definition beyond ten feet.

Joy, Loss and Choices

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Last night we visited Martha to report on Elihu’s first week of Waldorf. She herself was a supporter of his going there, and he was excited to sing “Simple Gifts” to her, as he’d learned it in his class and knew it to be her favorite song. I could now better explain why Martha’s farm had been named “A Place Just Right” from the lyrics of that song. As we turned into her driveway I slowed and pointed out the sign in front of the large farmhouse. He was pleased to now know from where it came. “What are those two clumps underneath the letters?” he asked. I told them they were clusters of grapes, they represented the vines that our friend Mike and Uncle Andrew had been planting in the fields there over the past few years (in anticipation of selling them to New York state winemakers.) We had a sweet visit, which ended with Elihu pooping out and laying on the floor, using hound dog Maisie’s tummy as a pillow. Uncle Andrew showed up to help Martha with her evening routine and after Elihu showed off his rubber band powered helicopter to my brother, we hugged Martha goodbye and set off for home.

It was a later night than we would have liked, as we tacked on a quick visit to my folks before going home and having a late supper. That’s the danger of a leisurely rising on the weekend; it’s a bit harder to get to back to a school night schedule. We were both glad that I’d cooked earlier, because dinner was quick and easy. Then it was off to bed, where we finished our book and then turned out the light.

This morning I awoke earlier than Elihu, and sleepily rose to attend to my chores. I thought since it had been a late night, I’d let him sleep a bit while I went to the cellar to feed and water the chicks. I guess I was too groggy to notice the absence of the now familiar and constant cheeping of the tiny guys, because the first thing I noticed that seemed different from usual was a glob of some unidentifiable substance on the concrete floor. Water? No. Pinkish, but gel-like. What was it? Then my heart stopped. No noise. Nothing. I knew before I even saw the three tiny mangled chicks on the floor what had happened. I’d opened the cellar door the afternoon before to let in some fresh air, but in our late night had forgotten to close it again. I’d remembered to close it every goddam day but yesterday. My heart sank to my toes. No matter how many times this happens, it’s always just heartbreaking.

I kept it to myself and tried to steer the morning away from chores. Usually Elihu would have run downstairs first thing to see his beloved chicks, but even he was moving a little slow this morning, so we had a mellow breakfast in the kitchen with the electric heater purring alongside us. I drove him to school where he ended up needing a quick session with the nebulizer in the school office (something his old school would never have allowed) before he went up to join his class. I returned home to clean up.

We’d had six baby chicks, but I could find only three. After I began to pay closer attention to the mess, I detected two other blood-stained sites where another pair had met their demise. At least that what it looked like – it was hard to tell for sure. I found three distinct pairs of feet, so I’m just guessing about the rest. One must have been carried off, for there was no evidence at all of the last chick. I tossed what was left of their bodies (the heads are almost always ripped off when they’re killed by wild animals) far into the woods to prevent my grown hens from snacking on the bodies. Why did this matter to me? I wondered to myself. Protein is protein. I was returning them to the woods for some other critter to eat anyway. Silly the rules we make for ourselves, crazy the ways we assign meanings to things.

Last few days Elihu has been watching some pretty horrible and graphic films on Youtube about factory chicken farming. Originally I’d wanted to discourage him – I myself certainly couldn’t watch along side him – but in the end he’d said to me quite seriously that he had to know about this. He wanted to know the truth. I’ve been bringing up the conversation about us making a solid effort to be vegetarians for a long time now – in fact I myself hardly eat meat anymore. I love it, but I make it for Elihu alone. He knows this, and lately he’s been wrestling with it. Facebook is full of ‘shares’ showing graphic images of the factory farming industry. It’s a discussion that is unavoidable in my immediate world. And my son is just beginning to think more deeply about this himself, and I’m glad to know it. We’ve also discussed the possibility of eating only the chickens that we ourselves raise. I point out to him that in most parts of the world, meat is not consumed as it is here; people eat far less of it as it’s not so cheap and abundant in other places as it is here. I tell him that part of the reason we’re used to eating so much meat here in America is because it’s affordable for us. Why? Precisely because of the brutal factory-raising of these creatures. It’s possible for us westerners to eat meat in large quantities specifically because of the inhumanity with which we raise these animals. Elihu is deeply conflicted. He loves meat. He really does. Must be something to the blood-type thing, I don’t know. But he seems to crave it. I love meat too, but can go weeks without it. Not Elihu. And so he is beginning to grapple with this. His thinking has essentially come to this: if we do not eat meat in a respectful and grateful way (offering prayers of thanks to the animal for her life before we eat) then we are simply letting the animal be consumed by less thoughtful, less thankful people. Essentially, she will have lived and died this horrible life in vain because there was no one to appreciate her life, no one to redeem this horrible event. I get it. And he means it. He’s not trying to create a weak justification for eating meat. I know what he means. But still.

Just now my work was interrupted by a sound I know well. I can often hear the chirping of my hens just outside the basement windows, but they’re never this loud. Besides, it’s raining out today, and even if they were just outside I wouldn’t hear them like this. I stop and listen. That’s a chirping sound – I know that sound! That’s not a grown chicken, that’s the sound of a chick! But now? After hours of silence? I’ve been in my office over an hour and have heard nothing. Could it possibly be?

In a word, yes. Somehow this little creature managed to escape the attack. It had had the sense to hide, to quiet itself, to wait until the danger had passed. And upon seeing me, it came directly towards me, peeping its hunger, its fear, its relief. How lucky this tiny bird was – is – for it is perched upon my shoulder, quiet now after some food and drink. I marvel at how this creature seems to understand that I will give it safety, that it needn’t fear me. Amazing. I don’t want to anthropomorphize this little chick – it’s obviously nothing personal that it has found comfort with me – but nonetheless there is something very touching, very moving about its show of trust. I feel a sense of connection with this creature.

Wouldn’t you know – I began to hear another cheeping sound. I searched in vain for a good half hour as I simply could not pinpoint the location of the second lost bird. Finally I asked a friend to come over and help me look. After more searching, and even giving consideration to making a hole in a wall to see if it hadn’t somehow become trapped inside, another chick suddenly emerged from behind the shelf on which my LPs were stored. Wow. Once the two chicks were reunited, all peeping ceased. So that’s some relief. Two little ones remain. Although Elihu has weathered this kind of loss before without even shedding a tear, I’d feared today’s loss might hit him harder. Something just told me there’d be tears of heartbreak today. There may yet be, but having these two survivors somehow softens the loss. And it has me even more conflicted about continuing to turn a blind eye to the horrors of treating animals as if they had no feelings. Chickens experience pain and fear. They also experience peace and comfort. This I know.

the first survivor emerges

The first survivor emerges…

The chick takes a rest…

and peeps to its lost sibling…

Finally, the two survivors are reunited.

Model T Visit

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We like to spend Sundays at home. I spend the first half of the day cooking large quantities of food thereby lessening the amount of time I need to spend cooking throughout the week. Now that Elihu is bringing his lunch to school it makes even more sense to cook ahead. Some Thai-inspired coconut curry sauce with lots of vegetables, brown rice, baked Greek style chicken, peppery beef and some bow tie pasta. All I need to do is heat it up for future suppers. We always have a bag of arugula on hand for salad. Makes me feel good to have this chore out of the way. I wash the dishes and wipe the counter top and derive a good amount of satisfaction at seeing my kitchen look pristine once again.

Elihu has waited patiently all morning as I chopped, cooked and cleaned. Finally my attention is all his, and we sit in the living room harvesting parts from past airplane projects in order to make something new and improved. We’re puttering about like this when we hear a loud rapping on the kitchen door. It’s our neighbor Zac with his almost two year old daughter, Annabelle. It’s a good thing it’s just them because Elihu and I are still in our pajamas. Last summer Zac and I had pulled an old harrower out of the fallen leaves here in our yard – it had belonged to Ralph, the man who built this place. Ralph had used it on his gardens here, and it lay where he last unhooked it from the tractor so many decades ago. It was still perfectly good, so Zac took it back to his place, fixed it up and returned a few days later to till our garden with it. I was especially pleased that Ralph’s old harrower was enjoying a second life. Today it enjoys a third incarnation.

Zac and his dad are tinkerers, fixers, assemblers of parts, solvers of problems. And they’re so damned laid back about it too. I’m in awe. Today Zac has come over to show us how he’s re-purposed a few of the tines from Ralph’s old harrower. He’s used them as springs for the seat on his 1925 model T. As the tires are the original rubber on wooden wheels, the bounce of the seat’s new-made suspension system really helps cushion the ride. Zac cranks the handle on the front of the engine and fires it up. It sounds just like you’d think, sputtering and coughing as it revs up to speed. Elihu hops on and Zac gives him a ride down the driveway and back through the old farm road alongside the stone wall.

Once again, I feel so lucky to be here, now.

Aviation Day

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I need to get Elihu to bed soon – and not sure I’ll last much longer either, so while he sits beside me researching the rearing of triops on my Mac, I sit here on the PC making the quickest update possible. Must say, this day was absolutely fantastic.

With a backdrop of some Earl Hines on the radio we drove to the nursery to admire the flowering trees. Then some modern big band arrangements carried us to the highway, where we then made a foray into some Ornette Coleman. After a bit we turned back the clock to some super-old timey Chick Webb, which finally brought us to our destination: the New York State Police Aviation Hub. Woo hoo!

We were given a private, unrushed tour by a most generous man whose job it was to oversee the repair and maintenance of the state’s fleet. He even let Elihu sit in the pilot’s seat while he powered up the craft (electric dashboard-type systems only) and then guided Elihu through the controls. Wow.

After this visit we drove the long way home and stopped in on a local music store en route where we got Elihu a chain for his cymbal which he’d been wanting for a while. It creates a little sizzling sound – we’d tried to make our own without satisfactory results. Perfect. After a nice chat with the fellow there – who himself was a drummer and maker of drums as well (and who knew of Elihu’s father) we headed north through the driving spring rain.

We landed at the local mall, and enjoyed the closest thing to authentic middle eastern food to be had within a half hour’s drive. Then it was off to the kiosk that sold RC helicopters. Elihu had brought his own – purchased at that same stand – and after some time hanging around demonstrating his skills at handling the toy craft the proprietor was kind to allow Elihu to pilot three different models – including one that was over two feet long! The man was quite impressed with his ability. I was too; just last night he’d given me a turn at the controls and I was unable to keep it level and unmoving. It’s harder than it appears. Looks like I have a young aviator in the house.

And capping it all off…

Bad Bug

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Was really sick yesterday. Really sick. Good timing, though. I’d just finished organizing and cleaning out the basement the night before. I’m a tad embarrassed to admit that after I was finished, as a reward for my dozens of hours at the thankless and grueling challenge, I took myself to the movies. To see ‘Wanderlust’ of all things. I was in the mood for some white bread, some frivolity. Nothing else that was playing appealed. I knew that it wouldn’t be worth the ticket price and that I’d probably regret it halfway through. But in fact, having gone with the assumption that the script would be kinda lame and it would undoubtedly pander to the lowest common denominator (and learning later that my assumption for the most part was true), I was in the end happily surprised if, for no other reason, than to see Alan Alda and Linda Lavin (peers, remember the 70s sitcom ‘Alice’?). I also dug a scene in which the very pretty Paul Rudd has a pep talk with himself in a mirror – something I’m guessing was probably him just blowing. It was refreshing to see some improv make it into a movie. The scene even made me actually laugh out loud. Something I realized – mid laugh – that I hadn’t done in a long time. Thanks Paul.

Got home, into bed and realized I wasn’t right. I’d been battling a persistent, pill-resistant headache for hours and was now getting flushed. I considered anaphylactic attack but no, it wasn’t a match, so I just went to sleep hoping it would right itself overnight. I awoke in the middle of the night with a miserable nausea. I don’t like discomfort – who does? – but I’ve always cited nausea and sore throats the worst. I don’t know why – but a sick gut has always trumped everything else. And I’ve broken my neck as well as several other bones so I do have something to compare it to (oh, yeah, and childbirth too). So what to do? Pepto seemed the only proactive thing. I downed some and waited. Discomfort grabbed me no matter what position I took; all I could do was wait for the inevitable. And it came. Throughout the next twelve hours my system rid itself of everything and then some. My diaphragm wrung itself like a mad sponge until my eyes were bloodshot, my head wet with sweat, and my temples pounding with headache.

This was also the day that my son was coming home, and he and Fareed were at the train station several towns away needing to be picked up. I could hardly move much less get in a car and drive. To make things worse, Elihu had left his precious dark glasses in Chicago and was without any protection. I was too out of it to dwell on it. I took the glass half full attitude. It would be really hard for him to manage being out in the world nearly blind, but it might well be a good, hard lesson for him – of how all-important his glasses are and of how important it is to always, always make sure to have them. I let this one go, and had to let Fareed figure the rest out himself. It cost him some change (the taxi alone from town was $27, to say nothing of the bus tickets here from the Amtrak station) but in the end it was ok.

Shortly after they got in (or maybe a week later, I was out of it and couldn’t tell) I smelled food cooking in the kitchen and pulled a pillow over my head to block it out. As I felt then, it smelled simply atrocious. But my next thought was one of comfort, of relief. Dare I say it? I was relieved that my ‘husband’ and son were home. The smell of food being cooked in my home said love, it said caring, it said ‘don’t worry, I got this one’… I know it isn’t logical given the reality of the situation, but our tiny house felt more like a home with Fareed there. With someone other than me keeping it together. I love my life here with Elihu, but man, when someone else is here it kinda highlights how lonely it can be sometimes.

I’m glad that my body still ached with flu when my brother came to pick Fareed up and drive him to the airport late last night. It softened the mood. The reality. How seventh grade girl of me is this? – it took the edge off knowing that this was the last time Fareed and I would be together as ‘legal’ spouses. The deal closes on March 7th, so technically, we’re still a ‘we’ til then. We hugged, and then I stood in the open door a moment watching him and Andrew walk off into the darkness. He turned around and nodded goodbye.

Fareed is back in his routine, Elihu is back in school, I am well. And my basement is both organized and clean. I mean clean. Not only do I now know where everything is, but also there is no more grunge on the floor, no more damp, decomposing old boxes, mouse turds or soggy piles of pink insulation laying about. The whole place is well-lit and inviting. I even have a work space for my new sewing machine! My goodness, seems yet another metaphor of transition. Fits and starts is this life’s progress, and most gratefully I’m feeling fit to start it all over yet again.

Barn Red

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My son, Elihu, is colorblind. It’s not merely a case of confusing red for green. He sees no color at all. However he is keenly interested in color; as a prolific artist he seeks to use color as accurately as possible. He knows the colors, shades and nuances of every bird without being able to see them for himself. His love of birds is a great motivator. He has simply memorized them all.

When it came time to choose a color to stain our new chicken coop, I’d thought I’d like a lovely dark gray, a color I’d hoped would create the likeness of cedar weathered by the seasons. And I had to include my child in the decision, even if he didn’t see color for himself. So I told him my plan, my objective. It was met with fevered and immediate disapproval. “It’s a barn! It needs to be red!” I offered that he couldn’t see the difference, so really, what did it matter? “What good is having a barn if it isn’t red?” he continued, near tears. “A red barn is a cozy barn! Everyone knows that!” Ok. I was the one who would have to adjust. So I did. I bought a gallon of semi-transparent stain in barn red.

But the bucket of paint sat unopened for several months as I continued to postpone what appeared to be a bigger project than I’d first thought. Thankfully, in the very nick of time a solution presented itself. Yesterday, a classmate of Elihu’s came over for a play date. His father is a painter. Before his father left, I asked if he might be able to help me with the project, as the mild temperatures seemed to be fleeting and the coop needed to be sealed before the snow came. In fact, he could – the next couple of days would work fine. And his brother might be available too. We went online a made a quick check of the weather. Mid to high 40s through the week. Just in time.

When I went to purchase more stain today (I was advised we’d need more), the man at the counter strongly advised against it, as it was now too cold for staining outside. To make things a bit dicier, the paint department was out of the stain I’d wanted. All they had left was the top of the line stuff. I assured him I knew what I was doing and gave him the go ahead to mix up the fancy stuff. I could only afford one gallon. If it wasn’t enough, the rest of the project would have to keep until spring.

By the time I pulled into my driveway this morning with the extra gallon of stain, the men were here, ready to work. Inside of two hours the coop was finished. Two gallons had turned out to be just enough. Standing back and taking it in I was thoroughly pleased. Barn red was perfect! And now I think that gray might well have looked tired, cold – a bit uninviting.

Elihu, hat’s off to you, my little colorblind son. I agree; a red barn is a cozy barn.

There’ll Be Some Changes Made

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There was a time when change of any kind would throw me into a fog of sentimentality. Now, not so much. On my recent trip to Chicago, a place I’d lived most of my life but had not visited for several years, I was quite surprised to see so many places so radically transformed. I understood the growth around Wrigley field; I had already witnessed the change beginning years before, yet nonetheless it was rather shocking to see the giant shadow of brick that blocked my view from the el as our train passed the ballpark. Neighborhoods that had been run-down and forgotten for years upon years had been rediscovered and revitalized so much so that I didn’t even recognize them until I passed them a second time at street level in a car. This would have sent the old me into a tearful episode. The old me would have taken all this very personally. I would have lamented the lost, original character of the place. But now it’s just not as tragic to me as it once would have seemed. Maybe my changed perspective comes in part from living in a part of the country with a longer history of such man-made changes, or maybe it’s because of my age and the way in which one’s middle years temper the self-righteous character of youth, probably both and more, but for whatever reason I find myself observing the changes in my once familiar world in a thoughtful, measured and slightly detached way. I guess it’s because my personal world was so rocked and transformed over the past few years that it’s made me realize that in the long run it hurts more to resist the change than to accept it. And what ultimately allows me to accept change is the knowing that no amount of physical or experiential transformation can remove the truth of the places and experiences that once existed. They exist for we humans as long as there is a memory, a story.

“In the end, you still have your story”. One day it came to me just like that. I had had an exhausting day of trying, but not succeeding, to better understand how my partner could have changed so. How could he have been that same person to have shared all those years with me? Here he was, now, a different person from the one I had once known. In the end it was fruitless to speculate on how or why he had changed; I needed some way in which to regard our years together such that they were not the loss they seemed to be. The only way I could begin to make peace with my situation was to know that in the end I still had the story – and in it all the good things that it had added to my life. I might not have my husband with me any more, but I do have my memories, my story. And really, after all, just about your whole life is the story. Even what happened five minutes ago is now the story. And whatever it is that no longer exists for you in your present does still exist in the story, and it’s a story you get to keep forever. And in having that memory, that story, you still possess the essence of what it was that pleased you about that person, place or event. For me, knowing that an experience still lives within me is comforting. It’s like I’ve backed up all my files. My house can burn down, but I still have it all inside me. (I sure hope the universe doesn’t put me to the test on that – I do have a friend whose house burned down not once but twice! And he is a musician who lost a lot of precious instruments, writings, music, recordings and mementos from a lifetime of travel. If I were him I’m not so sure my thinking would offer a lot of comfort, yet perhaps he too has reached a state of acceptance. He’s still active and upbeat – I’m guessing the lesson was integrated pretty well.) It’s scary to let things hold such power over you as to render you heartbroken and sick at their loss. It’s a lot healthier to consider yourself lucky to have had the experiences, lucky to have enjoyed the objects while they were yours and feel the gratitude for these things having added to the fullness of your life.

Change has never been easy for me, yet I’m getting better with it. Today I painted a room in my house which held some sentiment for me. It was my son’s room. Shortly after we moved here I has chosen the colors for his room with great care. I’d wanted his room to be easy on his Achromat eyes; not too bright yet with some visual interest to make up for his not seeing color. I chose a green for the bottom third of the walls, blue for the top. Funny thing was, in the end Elihu could not even detect the change in colors for I’d matched the values so well. He would have to examine the wall up close to even begin to see the line. The colors of the walls represented to me the first thing I did here in this house to make it ours. They carried with them the story of his not being able to see the difference in the two colors. They carried with them the story of a mother’s love for her son. The walls carried with them the story of all the books we’ve read together at bedtime in this room. The blue and green walls reminded me of The Story. Today, when I had the walls painted over in dove white, although I knew that the story wasn’t in any way diminished or forgotten as a result, I was still surprised – and pleasantly so – that the change was so easy for me to make. Hmm. Interesting.

The blue and green still shows through a little bit so tomorrow I’ll give the walls another coat of paint. A fresh new color for a fresh new story.

New Bird

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“Forty-three species”. Those were Elihu’s first words early this morning when I went to his bedside to wake him for the day.  He rolled over to face me, and he was all grin. He had added a new bird to his list.

A week ago or so we’d counted forty-two species of wild birds that he’d seen so far here in New York. Just last night he’d shrieked with joy at seeing a Rose-Breasted Grosbeak at the feeder for the very first time. While I didn’t see it myself, and was fairly skeptical, I kept the possibility open. Months ago he’d told me we had a Raven. He’d heard it, he explained; it was distinct and much different from a Crow. I placated him, told him perhaps, but thought it not likely as Ravens are usually not in this area – they’re more common down south. He defended his stance. One day he heard a guttural croaking sound from down the hill and came to get me just in time to hear it too. Still, my own ears could not convince me. Then just a few weeks ago, as I drove the winding uphill road to my home, I saw an enormous black bird fly overhead and land in a tree just above me. I slowed to stare as my mouth fell open. I simply could not believe it. This bird was no Crow. It wore a ruff around its neck, its beak was much thicker than that of a Crow, and man, this thing was fucking huge. Really. It’s a good thing I had a friend in the car beside me whose father is a professional birder – else I’d probably not have believed my own eyes. So, that day I had to apologize to Elihu for not quite believing him. We did, in fact, have a Raven about.

Yesterday, as I tended to the chickens, I thought I heard a Robin’s song. Without thinking much about it, my heart registered the hopeful feeling that the song has always inspired in me, and so I began to listen with more intent. It sounded very much like a Robin, but just perhaps it wasn’t… could it be the similar tune of Elihu’s Grosbeak? My heart lifted with hope and anticipation.

Once a new species visits, it takes a week or so for it to return and to convince others to join him at the feeder. And so, we will wait for the Rose-Breasted Grosbeak.  Elihu has spotted many birds at our feeder long before they became regulars; the Red Bellied Woodpeckers, the Starlings, the Grackles and more. He’s heard the Wood Thrush, Woodcock and other birds I could not pick out for myself. I must learn to trust my little nature boy.

And I should probably get ready to eat some crow.

Fire Towers and Fiddleheads

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Yesterday was such a bright and busy day that Elihu requested we have a ‘do nothing’ day today. And so we did. Not to say that nothing was done. I made meals, washed dishes, caught up on laundry, got the chickens out, put them back in, cleaned up the mess the raccoons had made of our platform bird feeder, collected eggs, cleaned up a hand-me-down gas grill (which is unfortunately trash despite my best efforts) and made a moth habitat in our gecko’s old terrarium. And all this without getting out of my pajamas (did manage to don an apron). Day is done, and I’m ready for bed. So there! It’s good to live off the road…

Yesterday Elihu, a classmate of his and I visited a local wilderness preserve in honor of the local hero: the Karner Blue Butterfly. It’s not doing so well these days (I believe it’s endangered) and lives primarily on a local blue lupine flower which is currently in bloom. A neighboring town created a day-long celebration around the week in which the little creatures could be seen flitting about the preserve. There were fun things to do for the kids – and there were lots of kids about. They were provided with nets to scoop up critters from the lake which they then could deposit into plastic bins for all to see and identify. The big boys ventured down the wooded slopes to the creek which was home to minnows, the preferred catch. As I sat in the sunshine feeling very good about the expanse of water before me (I love water, I crave it, I miss lake Michigan dearly) the boys chased after crayfish and snails. There was no hurrying this day along. I sat for over an hour. Young mothers with tiny babies and elderly couples wearing sun visors and too many clothes for the hot day shared the bench with me as I sat. I felt so blessed to be agenda-free on such an exquisite day.

After another hour holding snakes and admiring a small collection of injured and rehabbed birds of prey we then headed off through the woods and up the side of a good-sized hill to see the newly restored fire tower. We’d planned on going to the top. I didn’t think much of it, it didn’t look very challenging. I’d hoped to rush in and to the top without time in which to reconsider. We were stopped, however, and made to join a list of folks waiting for the privilege of climbing the ten open flights of stairs to the top. Elihu’s classmate said he wasn’t going with us. I lobbied in favor of doing it; I explained that if he didn’t, he might never remember this day – it would just be another summer afternoon of many – yet should he choose to climb the tower with us he would not only be very proud of himself, but this day would forever stand out in his memory. He didn’t consider my argument for even a second, but instead asked if he could return to the lake. I released him from the challenge, and soon he was gone.

Elihu and I were undaunted by our half hour wait, and were excited and ready when our turn came. Yet by the third flight of the wire mesh stairs it became evident to us that this would be a little more challenging than we’d thought. I was surprised that my low-vision kid, who can’t see images just twenty feet away from him was becoming nervous as we moved farther away from the ground. We both talked to ourselves encouragingly. Such things as ‘we can do this, it’s safe, people have done this all day’, and ‘imagine the guys who had to make this silly thing’. If it weren’t for the mom ahead of us (whose own kids and husband bailed by the second landing) I’m not sure we would have made it. Elihu and I cited an expression used by an old-timer friend of the family now many years gone. The old farmer would express the sensation of being up too high as inspiring ‘asshole pucker’. We’d cleaned the saying up a bit by making it into ‘pucker factor’. That factor was definitely palpable here. ! But by keeping our focus on the connection our feet and hands made with the metal as we pushed on, and by saving our consideration of the great altitude for the top, we finally made it.

Atop the tower was a small room, about 8×8, with of course, a hole in the floor through which we entered. The hole offered dizzying evidence of how far down the ground actually was. A 70-something fellow stood to welcome us, not that his demeanor made us feel so welcome at all. His face showed something more like scorn, fixed in an unamused scowl. To lighten the mood, and because he was there for us, really, I asked his name. ‘Larry’ he said. A pause. He wasn’t giving us any more. That distraction over, I finally looked about to enjoy the reward. It was stunning. We were now quite far above the tall treetops of the forest and could see the Adirondacks stretched out to the north and the Green Mountains of Vermont to our east. Larry even helped me to locate a landmark, the cell tower on our road, so that I might further appreciate where we stood in the lay of the land. I savored the cool, high-up breeze. It felt rare and free, unstopped by the hot goings-on of dirt, houses and asphalt. The air alone was worth the climb. Aware of the line of folks waiting below (although to stick my head out and actually look down upon the people waiting was not something I could quite bring myself to do) we wrapped things up and began our descent. I went first, and behind me Elihu was stopped at the prospect of making the first frightening steps back down. I was touched as Larry spoke to him as a father, gently telling him where to place his hands on the railing and offering tender encouragement. It revealed to me in that tiny moment so much about the man. Larry’d had a long day up there in that tiny box, and as unamused with giggling tourists as he might have been, in the end he was a very kind man. I thanked him in my heart as Elihu plucked up his courage and followed me down.

Once down, I shelled out $5 for a cloth patch of the fire tower so that Elihu might put it on his school backpack as a show of pride and accomplishment. He also received a little card from the fellow signing folks in that showed him to have ‘climbed the Cornell Hill Fire Tower’. So there.

We retrieved Elihu’s friend and hopped into the car to visit the butterfly preserve which was about a mile down the road. It was an open expanse of rolling hills with sandy trails and stands of blue lupine flowers. A few tall oak trees stood here and there giving the scene a dream-like feel. The little insects, while not ubiquitous, were to be seen flitting about through the stands of lupine and across the sandy path. Elihu’s friend and I tried our best to point them out to him, but without the benefit of color vision they are hard to spot. They are also less than an inch across, and would not cooperate by staying still long enough for us to pin down their location. I decided after a hot and dusty half hour that we would head back. Elihu began to cry, to sob. ‘I’m not leaving until I see a butterfly! This is why I came here in the first place!’ His pal kindly put an arm around him and tried to console him. ‘It’s Ok buddy, we’ll find you a butterfly, ok?’ That was an especially sweet thing to do, for this kid is a rough and tumble, dirt bike riding sort of kid – rather the polar opposite of Elihu. I have a snapshot of that moment in my mind’s eye. Inspired by the show of support I got on board too and declared that we would send out our request to the universe – and to the little critters – that we wanted to see one, we expected to see one, we had no harmful motives. And a magical thing happened.

I told us all to quiet ourselves, stop where we were, send out these thoughts and wait for just moment. As we squatted down on the sandy path, a little blue creature flitted over to us. I extended my hand, and she (makes it lovelier to call her that, don’t you think?) landed on it. She stayed. Elihu saw her. She was an exquisite pale blue with pink iridescence. The outside of her wings which were much more difficult to see as she flew were now plainly visible as she closed them for us. Astonishing how beautiful. I was surprised that she was so finely detailed, so subtly colored, so perfectly adorned. For whom? For what purpose? Surely for the purpose of beauty alone. ‘Can I hold her?’ Elihu’s friend asked. I touched my hand to his, and the little creature walked onto his hand. Finally, Elihu put his hand out, and the butterfly continued her walk onto his finger. My son could not resist; he cupped his other hand over her and brought her close to his eyes to see. I wonder how much he can see as his glasses are dark and red… I know he can’t see color, but he can see detail. He must see the tiny designs, mustn’t he? It seems that there is so much deeper a fascination of nature for this child, perhaps not in spite of, but perhaps because of his limited ability to see it as we do. This was a thrilling end to our day. Elihu lifted the creature to the air, and she departed. We three stood there, each one of us realizing how magical this had been. A perfect time to end our afternoon and head home. Thank you, little butterfly.

That night I made a tasty dinner of perfectly-prepared sirloin steak with fiddleheads for our vegetable. It is times like this that make me so grateful to have this young person alongside me in my life. I told him that these were picked right here in our area, and that they were considered delicacies in other parts of the country. While they were $20 a pound in Arizona, they were a fraction of that here, and they were fresh! My story wasn’t necessary to sell the vegetable; he is excited by anything of nature and the prospect of munching on these perfect curls of baby ferns was enough. They were asparagus-like and yet not, of the woods and green tasting with a slight crunch, luckily I’d prepared them pretty well. This was a simple meal, a perfect meal. (My kid has no desire for carbs in his meals – past and rice never get more than one bite. I sure don’t need ’em, so I rarely prepare any.) Dinner finished, sunburn stinging on our shoulders and the chickens safely in their coops, we got ready for bed.

A day of sunshine, butterflies, fire towers and fiddleheads. Another good one.

Drummer, Different

Posted in An Ongoing Journal..., Low Vision Life, Mommy MindLeave a comment

What is it, I wonder to myself, trying to pinpoint it exactly, in definite and concrete examples, that makes my son so different from his peers? The most obvious thing one might cite, the dark red glasses, are off the list from the start. That’s not it at all, it’s something else. I think back on my interactions with his peers. Once and a while one will stand out, one of many will have a similar ‘thing’ to my son; the only way I can articulate it at the moment is, they ‘get it’. Get what? And am I not sounding a bit of a snob here? Yeah, I admit that, I am sometimes a snob. But that’s not it right now either. Elihu is different; I think anyone would agree. Just what is at the essence of this difference? Might I make a list of some sort for myself? Would that help? I need to understand this better…

I sometimes feel a tinge of sorrow that Elihu is so thoughtful and aware of things in his world. There’s a hint of adult, of peer, in him that sets him apart. And because of this I sometimes miss his truly early years – the first three, I’d say – when he was really and truly a baby. Then I knew unquestionably what he was. Then at least there was no doubt, I knew where I stood. I knew where he stood. Lest I fret too much over this, I’m reminded by things he’ll say or do, ways he’ll act (see tantrums and laundry!) that do in fact tell me that he is still a young boy. Yet somehow, in some way that I’m struggling here to identify for myself, he is no longer a child. How can I say this? He is, yes, he is a kid, and yet, not…

And as for a tiny child’s adoration? Well, although my child is no longer small, I’m lucky to get that daily. In fact, it’s really one of the things that keeps me going. I can’t imagine being a mother to an autistic child who never hugged, kissed, told their mother they loved them. Truly, my heart goes out to these moms who must long for those moments with every cell in their body… I am grateful to the skies for what my son bestows upon me. When I come in to wake him each morning (or, well, nearly each morning!) he always insists I stay to snuggle. This means that we just lay together on the bed for a few moments, usually with arms or sides touching. Sometimes we hug, sometimes not. It’s just a comfortable moment in the covers, in which we simply take in being here, being together. Sometimes we talk, sometimes not. It’s just about connecting.

And regarding connection, here is another related perk of living with this aware child; he recognizes his own need for connection in the course of his day. If we’ve been doing our own things for a good bit of time and have been psychically apart in some way – after a day at school, at home, or temporarily isolated by life’s general busy-ness, Elihu will come up to me and say “We haven’t connected in a while. I need to connect.” At which time I drop what I’m doing. We find a place to just sit together. Since he’s still small enough to fit in my lap, he usually climbs up, and we just sit together, arms around each other. We’ll look into each other’s eyes and just stay there for a moment or two. And I do realize how this seems very much like a romantic exchange. I believe it is related, yet it is very different. And I can tell you that this is is one very peaceful and blessed way to recharge the batteries in a life of never-ending events. An oasis for us both. And it’s been at Elihu’s request alone (until recently, as I’ve begun to recognize when my own feelings of disconnection surface and have requested ‘connections’ of him). He alone came to know what it was to feel disconnected, and furthermore, to know the importance of turning that feeling around. He knew what he needed, how to get it, and how to ask. That, I think, is a skill that many adults don’t even have together, ya know?

In many ways I’ve created in my son the very things that now I sometimes lament having encouraged. I sometimes wonder if I’ve created a child too savvy, too adult-thinking for his own good. Yet I do not regret my teaching him. (I do regret not curbing some of my more unheatlhy actions, like muttering about people under my breath, being quick to anger, expressing opinions like they were accepted fact. I pray my ‘good’ teachings – you know, the old ‘do as I say and not as I do’ – can make up for some of my poor examples.) I’ve spoken to my son as if he were a peer for perhaps all of his life. I also know that I’ve spoken to him in a cutesy baby voice once upon a time – how can one not speak like that to an infant? I can remember playing ‘kissing factory’ – a mommy-invented, changing table game which most certainly involved baby talk. But beyond those tiny years, I’ve talked to my son with an inherent respect. I tried to impart information – and understanding – to him as I would have anyone give it to me. I’ve always wanted him to truly get things – to understand as much as he’s able. I personally believe that people rise to the expectations set for them; I expect that he can understand, so I give him the information to be able to understand. Make sense?

There’s a personal motivation for my wanting to present all pertinent information possible to my son. It comes of my own experience in part, and it also comes from the sense that Elihu and I both have of his being somehow ‘different’. Throughout my life I have often felt very, very lost in this world – often not understanding rules that seemed second nature for those around me. Kids always seemed to ‘know’ things that were an absolute mystery to me. How did they all just ‘know’ about the rules of the games at recess? Or know the icons of pop culture? Or all the types of cereal? Was it just because I didn’t care, no one taught me or that I was missing some sort of gene for this? I missed stuff growing up, and I still just can’t place what it was. It wasn’t even so cut-and-dried as not knowing the names of the teen idols or cereals. Cuz I knew of many, and my kid too knows the names to drop. There was just something else missing. I was aware of it. I just knew that I was missing things, information – something – that other kids were getting. Elihu’s dad had a similar ‘missing’ of things, cues, information and so on, however the difference with Fareed was that he didn’t know he was missing things! He was clueless, and in his case, ignorance was bliss. He was not plagued as a young child by a gnawing sense that he was missing something as Elihu and I have been. This sense of being in the dark, of living in a world parallel but apart from others is something Elihu feels very keenly. Oh how it hurts my heart to hear him express his anguish, his deep need to be like others, to see the world as they do. He’s been brought to tears wishing that he would love Star Wars and soccer like his classmates. Through his tears he condems his beloved bird guides and artists’ tools, his djembe, his drums, his difference. It doesn’t happen often, yet when it does, I let it. I don’t let my discomfort at witnessing his allow me to stifle him. Instead, I try to be a quiet audience, an emotional sponge, taking in all the sorrow, all the isolation, being a witness to it as if somehow I can bear it away from him, transform it, and leave him renewed and full of hope. My intention is for this, yet I doubt I can lessen his sorrow by much. So I do the best thing I can. I just listen. If nothing lessens the pain of these moments, at least I can feel better about them when I consider how healthy it is that he can identify that he’s feeling this way, and how lucky Elihu is to come into such an awareness at such a young age. My own feelings had no audience, had no witness, and so manifested in my high school years in the terror of panic attacks, and the near-miss of not graduating.

My talking to him like a peer – my giving him as much goddam information in as clear a way as I possibly can – talking to him with an inherent respect – I do ALL of this as a means to fill him up, to equip him with so much knowledge that if he don’t know it today, he can goddam well figure it out for himself one day. Ya know? I want him armed. I want him loved. I want him to know that I’m there for him, I’m not holding any secrets back. I’m in full transparency mode. I received an email from some mommy-related site the other day, whose topic was ‘when to have the sex talk with your kids’. Sheesh. My kid’s known how babies were made for years. He’s on the ready for those intoxicating, irrational and annoying feelings that his teenage years will bring on. I’m not saying that we’ll continue to have an open, easy dialogue about sex when those years hit, I’m just saying that we’ve been there, done that, and it wasn’t a big deal. Really.

All that and he loves flowers. I say this with unabashed pride. Yes, now I’m just bragging. Whenever Elihu comes grocery shopping with me, it’s understood that his repayment will come in the form of a long, lingering visit to the floral department. We’ll lament the high cost of the beautiful bunches, search for the most affordable items, an invariably settle on a single red rose. I’ve taken to pointing out to folks who we chat with there that Elihu sees no color. I’m not bragging in this case, but rather looking for someone with whom to share my continued amazement. The kid sees NO color at all, yet finds beauty in flowers that few people do. On a purely practical level, I do think he’s keyed into the shapes and lines and profiles in ways ‘we’ aren’t, much the same way as he’s attuned to the structural and linear differences between birds and can usually identify them much faster than color-sighted folks. Whatever, it really doesn’t matter, for his love of flowers is deep and real. He cannot be rushed when admiring flowers, whether in a shop or a garden. Man am I glad this kid found me.

Then, there’s the drumming. And I don’t mean the ‘look how cute my kid is on the drum set’ nor do I refer to the hippie-dippie sort of hand drumming that passes in a drum circle. He’s got something. I have something drum-related too, only it’s more the desire to play than the innate ability. I got myself some drums at seventeen, and spent hours on them, but never got much past some rudimentary rock skills. But my lack of ability wasn’t daunting to me; I just really needed to play. To keep that groove, that steady right foot… So, Elihu’s got this natural ability to play hand drums – he’s got this signature groove he plays on his djembe. His dad would call it a Punjabi sort of groove, and while I don’t know enough of the specifics to comment on it, I can say yes, that makes sense. It’s a swung thing, a distinct pattern that I myself cannot emulate. I haven’t tried very hard, for I admit that I’m not one to put lots of effort into something if there isn’t a flicker of natural aptitude for it. And clearly, this rhythm is something inorganic to me at the outset, which gives me a great deal of respect for Elihu’s ability to play it, and so effortlessly, so naturally. Not sure when Elihu ‘got his groove’, but he’s had it for at least a year. I think last summer it kind of just came. His dad got him a nice-sounding small djembe a couple of years ago, and last year it just made sense.

My kid also has a great sense of humor. I myself grew up with Monty Python and have exposed my son from the start to some of the more classic bits (and the naughty bits, sorry, couldn’t resist) since he was able to possibly understand them. I have perhaps desensitized him in some way to profanity in my sharing of some humor, but at the same time I have taught him the importance of using profanity in only the most carefully chosen, and appropriate places. It wouldn’t be a ‘bad’ word if we used it all the time, would it? He knows swearing is not something he’s allowed to do – at least in the proper and outside world. He also knows how funny just one little swear word can be, when inserted at the right place. Timing; that’s something he gets. He’s gotten that for as long as I can remember. Man, he’s got that thing. This kid was being sarcastic with me – and fooling me with the old straight face – since he was four! At five his greatest aspiration was to be like Calvin, of “Calvin and Hobbes”. (In fact, when he was five he went as Spaceman Spiff for Halloween.) He’s even concocted his own composite cartoon in which Calvin coaches the young and naive Caillou. Hee hee. Can you just see how loaded that one is? Maybe being outside the normal world helps him to see how funny things are. I think that’s part of it. We all know that phenomenon of the professional comedian; a loner, recluse, a person of few words who seems a whole different person altogether when on stage.

So I guess I’ve compiled a list of sorts. Self-realization, self-actualization, self-determination, self-expression. Not a bad list. Just maybe too heavy a portfolio for such a young child. Maybe that’s what that sense of humor is for.

“A” Boy

Posted in An Ongoing Journal..., Low Vision Life, Mommy Mind, PicsLeave a comment

My son has Achromatopsia. It’s a congential disorder of the retina, which is to say he’s had it since birth, and will have it for the rest of his life. The best metaphor I can find to describe Achromatopsia is this: his eyes have the hardware to see, but he’s missing the software, or the app. Essentially, he is missing a protein in his retina which delivers the visual information from the cone cells to the brain. I do realize that my explanation may be rather simplistic, and those who’ve spent hours upon hours learning about this might find fault with my presentation or correct my understanding about it, yet for our intents and purposes the metaphor works well. All I know is that his experience of the world is much different from ours, and as his mother, his number one advocate, I am always mindful of it. Thankfully, when the technology to deliver the missing protein to his eye is perfected, there is hope that he will one day have the possibility of correcting it.

Elihu is considered legally blind, which is a strange, nether-world in which to live. Yes, he can see. No, he cannot see color – any color at all. Most people are amazed at this fact alone – and in order to demystify it, I usually tell kids to take the color out of there TVs in order to see the world as he does. For the over 30 set I just tell them to envision black and white films, or perhaps even and Ansel Adams photograph. Yet that’s not the end of it. Elihu sees very little detail beyond 20 feet. He also is virtually blinded by light and must wear dark red glasses in order to function. Why red? Because that is the spectrum that sops up most of the light for him. Since he can’t distinguish color, the fact that the lenses are red means nothing besides the comfort they afford him. Essentially, he sees using only rod cells – the ones that kick into gear for us at twilight. The glasses he wears must dim light down to that sort of level. And as those who’ve studied candle power can attest – the sun is not just a whole lot brighter than artificial light, but rather exponentially brighter, so finding ‘comfort’ in outside light is a tall order.

Elihu can’t recognize friends in the hall at school when they call to him. He can’t always follow kids running in the playground. Depth perception is tricky for him; he’s been tripping over curbs all his life. However, as with anything, he’s become adept at living with it, and the older he gets the fewer things he’s surprised by. He’s learned to be gracious when people approach him. He’s learned in part from mom and dad, who being performers are often greeted by people whom they can’t always recall meeting. Being polite is all that’s called for. “I’m sorry, I’m really bad with names, can you please tell me your name again?” or “I’m sorry, can you please tell me again how we know each other?” In his case, I’m encouraging him to tell folks he can’t quite make them out until they’re fairly close up, so they know he’s not being aloof. Elihu is now beginning to feel fairly self-conscious about being different (like he needed a retinal problem to set him apart!) and so he’s going to face some challenges in the next few years. I just keep telling him that a sense of humor helps. This he knows well.

There is an island in the middle of the Pacific – it’s in the Federated States of Micronesia to be more specific – called Pingelap, on which many of the current residents are Achromats. Apparently, hundreds of years ago several of Captain Cook’s crew, shipwrecked on the tiny island, carried the recessive gene for Achromatopsia. They stayed on the island to live, to raise families and ultimately created a gene pool heavily populated with the gene for A. Elihu and I have a dream to one day visit this place, and bring with us dark glasses for all the residents who need them. I cannot imagine having Achromatopsia and living on a sun-drenched island, and it makes my heart lift to think of the relief we might one day bring to them.

John Kay of Steppenwolf is an Acrhromat. (Check out some pictures of them and note John’s dark glasses. Not a costume choice, but a necessity.) I think it’s absolutely ironic that the man who penned the iconic “Born To Be Wild” doesn’t even have a driver’s license. It’s even more ironic that today he produces nature videos. I’ve heard his wife does the color correction for him. This always makes me smile. Go John! Go Elihu! Go As!

Even though Achromatopsia will not prevent my son from realizing his full potential, it is still my single greatest hope that one day Elihu will have the option to choose for himself whether or not to change his vision. Ultimately, it will something that only he can choose for himself. ‘Til that time, we have many adventures awaiting…