Achromatopsia – Page 2 – The Hillhouse

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.

Post 400

December 11, 2013 Posted in An Ongoing Journal...2 Comments

My first post was written in March of 2011. I have a hard time realizing that it’ll be three years soon. When I started out here, I wasn’t exactly sure what I was intending to do other than to gain a little witness to what I felt to be a pretty unfair situation. While I still feel there’s much about our situation that has been far less than fair (I can hear my mother’s voice in my head ‘who ever told you life was fair?‘) I can now see with much greater clarity – due in great part to this blog and the wonderful correspondence it’s inspired – that what had started out as a personal tragedy in my life began instead to show itself as a rare opportunity. In the beginning, when I began to write, I felt like I was talking to myself, but I always held out hope that there was somebody else in the room with me. After all, I was feeling very alone in the early days of The Hillhouse and this was my only link to the world. Thankfully, it’s a big world, a big room, and as it turns out I haven’t just been talking to myself this whole time. Phew.

There are now over eight hundred of us here, there are four hundred posts in the archives, and The Hillhouse has been visited over thirty thousand times. Wow. ! That’s fun to know. And the world map – man, impressive. I’m waving hello to all of you, wondering as I stare at the list of countries – did you happen upon us by accident? Are you a local or a lonely expat nostalgic for the U.S.? Do you visit because you too have gone through a divorce, because you too can’t make peace with growing older, or because you too have chickens? Or are we a serendipitous, tangential stop on a walkabout thru cyber space? I wish I could meet you in person; I’ve seen and read many of your blogs, and you’ve opened so many windows to other experiences and places which otherwise I’d never have known.

Not meaning to sound dramatic here, but this whole blogging adventure has been life-saving for me. Really. You have all helped to save my life – my hope, more accurately – and for that I thank you from the bottom of my heart. I so appreciate your friendship and emotional support. I send mine back to you. This planet is not for wimps, and it’s not possible to get through the adventure solo. So again, thank you, thank you, thank you.

See you again soon…

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.

Jim’s telling Elihu he thinks with a little leverage he might actually be able to handle a 50 pound bag. ! Mom’s not so sure…

Thanks, Arnolds! Very pretty place you got.

The nearest ‘city’ of Amsterdam, and its bustling downtown.

Loved this sign since I was a kid. It’s the city library.

It’s the Saratoga County airport! Woo hoo!

Ok, so my legally blind kid recognized the profile – and correctly identified – this plane as it taxied in on the tarmac. Crazy.

Mama loves vintage

mmm

Talk about the wind in your hair. !

Can you imagine??

Check out the word ‘experimental’ on the side. ?! Yeeps.

Something’s coming in

Beautiful in blue

Not a very glamorous job, but necessary. !

And a helicopter, too! That’s my dream – one day I have to know that feeling…

Back at home, Elihu surprises Mama! He himself only weighs 58 pounds, after all!

Chicken approved.

Heartbreak of Delete

April 30, 2013May 20, 2013 Posted in An Ongoing Journal..., Divorce Diary, Low Vision Life, Mommy Mind67 Comments

It really wasn’t his fault. I’d asked Elihu to go and get the phone by hitting the find button on the phone base. He hit what looked to him like the page button. Yeah, it does kinda look like it. The little icon of the phone and the icon of the garbage can are very similar in shape. Once again I learned something about his eyesight when he told me that he could barely tell the difference between them. Even though he sees fairly well up close, these buttons were virtually indistinguishable from each other. And so, with one touch Elihu erased two voice messages from my father that I’d kept on the phone for months. They were the last times dad was able to call me on his own. The last time I heard him call me ‘sweetie boopis’, a term of affection he’d used for mom and me ever since I can remember. Dad no longer called me this. Dad no longer even called. With mom now retired and home all the time he had no need to call me during the day anymore. In fact, dad had ceased calling me altogether sometime over this past fall. I’d noticed it, and so had saved the two messages from dad on my machine. And having downloaded many hundreds of photographs over the weekend, I’d actually put it on this week’s to-do list to archive those two precious messages. But in one split second they were deleted without any warning. The timing was more than ironic, the poignancy of the loss so acute, that when I learned what Elihu had just done, I lost it.

I’m usually good about small traumas. I don’t freak out over things as I certainly might have ten years ago. After having my husband tell me about his other children and his choice to leave our marriage – after news like that all else fairly pales. Nothing has ever come close. But this loss hurt. As I sobbed into my hands and rocked in disbelief, not caring if Elihu himself hurt or not, I realized why it grieved me so. Because dad had turned a corner sometime over the past few months, and I had so very little of his old self documented. Nothing recorded, no videos, few photographs. I’d been so busy living my own life until now that I’d taken the mundane for granted. Those voice messages had still sounded like the dad I knew. They were a window into a time that I realized with great reluctance was now gone. Over the past few months dad has become almost childlike – but it didn’t really hit me until I saw him at the party. He was definitely changed. Due partly to the natural progression of whatever age-related disease he has (dementia or Alzheimer’s – jury’s still out) and partly as a result of my mother’s incessant expression of control. She babies him like crazy, stealing away whatever little power he might still have over his own life. I know she may think she’s doing it for his benefit (that is if she’s even aware of her behavior), but I can say that since she’s retired recently dad’s gotten worse – and much, much faster than ever before. Take away someone’s motivation for initiative and you rob him of a basic human need. I know she can never see it, but even my young son can. We don’t like to visit their house for too long, not just because of Elihu’s cat allergies (it’s a five cat household) but also because mom is quick to react negatively (she even takes personal offense at Elihu’s allergic reaction to her cats; she’s often convinced he’s overreacting), and she’s quick to tell others what they should do and or how they should be doing it. It’s exhausting to be in mom’s household too long, and I know even my father in his declining powers is aware of it. Fighting her need to be in charge is difficult even for a vigorous and healthy person; naturally dad in his state can only acquiesce to her dominant nature.

It’s been my own personal quest not to become as she is; not to try to assert myself into the outcome of every situation. And while it’s a work in progress, I have done a good job. But with this one tiny event – the erasing of those two precious messages – my anger rises and I begin not only to hurt, but to feel sorry for myself. To see myself as my mother sees herself; a martyr to life. I begin to think that I lost something because I didn’t take care of the task myself. I mutter to myself under my breath that if ‘I don’t do something myself it doesn’t get done right’. I fume, I cry, I throw something across the room. I know Elihu doesn’t deserve this, so I take my tantrum outside. What happened is sad, yes, but I also know there’s something bigger at the root of it than the loss of those recordings. What is it? I pace, I cry, I feel my heart positively breaking. Then it dawns on me. I know what’s bothering me, I do. I’m scared about losing my father. And I’m scared that when he’s gone I’ll have very little to remind me. Of his voice, his smile, his essence. I know it’s silly human sentimentality, and in the end sentimentality is only superficial, but nevertheless it’s in me to my core. What will I do when he goes? Other people’s parents die, I know. But what happens when mine do? Even mom, as tiring as she can be sometimes, she is still my mother. How on earth will I continue when she’s gone for good? How will I cope with this sorrow? Now whenever the phone rings from next door I think “Oh no, this is the call…”

When Elihu was little we read a book by Richard Scarry called “The Best Mistake Ever”. In the story Huckle’s mother gives him instructions to go to the store and buy a short list of things for the household. He forgets his list, but with the help of his friend Lowly Worm he reconstructs it the best he can from memory. Instead of oranges he gets orange soda, instead of potatoes he gets potato chips, instead of cream he gets ice cream. When he arrives home his mother is very upset about it until the doorbell rings and it’s his Aunt and cousin who’ve come by for a surprise visit. They all have an impromtu party with the things that Huckle and Lowly have brought back, and it’s agreed on by all that the party was thanks to ‘the best mistake ever’. What a wonderful idea. I just loved the story, and although I’d heard this concept before in other contexts, until I read that particular story I didn’t fully get that the potential for unforeseen possibilities lay in the wake of mistakes – small mistakes as well as the really big ones. Even my then four year old son got the metaphor and soon we were both making lemonade from lemons; always quick to cite minor mistakes as ‘the best mistake ever’. (When Fareed made his life-changing decision I immediately thought of this story. At first it was a very bitter pill, but now it seems to be so true. If it hadn’t been for that we would never have known the life we have now.) And so with this current little episode of heartbreak I try to apply the story, I try to imagine how I might turn this around. How I might use this small loss to serve us better, how I might learn something or experience something good that otherwise I might never have known. I didn’t sleep well last night because I just couldn’t get past the sting of the loss. But this morning I awoke with some inspiration.

Friday night dinners. We’ll invite ourselves over for supper once a week. I might never hear my father’s voice again on my answering machine, but I could still make some videos of him with Elihu. We could still ask him questions – he was still very capable of conversation, especially when it was about things from the past. Yesterday – even earlier in the same day – was not something dad could speak about with any true clarity, but if one were to ask him about years past, especially his youth, he always had something to say. I told mom about my idea and she agreed. Elihu did too (he needs to dope up pretty well to go over there. And as long as our stay is an hour or less we can put up with the cats and the control issues. !) So we Conants have a plan for our future Fridays. Perhaps we’ll even learn some new things about dad – all on account of that unexpected mistake. Maybe my heartbreak itself can be erased as easily as those recorded messages.

Elihu’s Tenth Birthday Pics

April 29, 2013May 14, 2013 Posted in An Ongoing Journal..., Elihu's Room, Mommy Mind, Pics2 Comments

What a fantastic day from start to finish. Gorgeous weather, dream-come-true birthday gifts, lots and lots going on all at once – music in the basement, a traveling trumpet, a worried goose, chickens underfoot, a trampoline and an old-timey car… and our wonderful friends and family to share it all with…

The birthday angel came!

WOW! The long-wished for Calypso remote-controlled glider!!

And the grown-up software for learning how to actually fly! OMG!!

Very proud owner of the Calypso

There’s a helicopter coming in for a landing just above the cake… (bad angle to see well)

The party gets started

Something’s happening in the incubator…

It’s somebody else’s birthday now, too!

Some boys sneaking away for a little DS time…

Alex and Paige on the hammock

Jessica and Matt enjoy the zero gravity chairs and the view

Time for cake!

Look who’s here! The youngest resident of Greenfield, baby Rachel – and her whole family!

Annabelle is a big sister twice…

Hayden announces the gifts with a fanfare

Look what Cora made for Elihu!

Cora and Sophia made these too!!

Lots going on at once…

And it looks like everyone’s having a good time

What a nice bunch of folks

Elihu with Grandpa, Mama and Grandma

This poor goose was very frustrated and tired with all the coming and going…

Things take a little longer, but that’s ok. The whole party actually picked up and moved to accomodate Dad when he arrived. So grateful to everyone for including him. He hasn’t been out in ages…

Bye neighbors! Nice to see all five of you…

Elihu and I have dinner by candlelight. Heather brought me some “Happy Birthing Day” flowers! So very kind of her.

Two very happy people at the end of a very lovely birthday.

Sunday Afternoon

February 10, 2013February 13, 2013 Posted in An Ongoing Journal..., Farm Life, Mommy Mind, Pics1 Comment

It’s been a nice day at home. Thought I’d entice Elihu outside by suggesting we follow the resident fox’s tracks around the woods, but he was happier inside. I remind myself that a bright, snowy day for an Achromat can take a bit of energy and today he just wasn’t up to it. Instead he studied up on airplanes and engines, enjoyed some time flying his helicopters – and we had a nice surprise visit from our neighbors Stephanie and Zac and their two daughters, Annabelle and Bailey (they’re expecting baby number three in late April). They came by on their old model T, for which Zac had made a fine set of wooden skis to replace the front tires.

Mom’s still in the hospital another day, so before long we need to stop by for a visit, and then we’ll head over to dad’s to bring him supper. It’s a school night, so we don’t want to make it a late one. It’s been a nice, relaxed day of aviation, friends, cooking and baking. A perfect Sunday. Here are a couple pics of Zac’s prize ride…

Loading up the family…

Crank starting the old engine…

All aboard…

They head off the long way ’round…

Passing us to the East (Saratoga Lake near the horizon)

Heading North towards the field…

Snow is clearly no problem for this nearly 100 year old vehicle!

Culling the Flock

January 11, 2013January 11, 2013 Posted in An Ongoing Journal..., Farm Life, Mommy Mind, Pics2 Comments

First our hens weren’t producing enough eggs. Now they are. Only problem is, over Christmas break some of our regular customers weren’t around and our good ol’ gals just kept on doin’ their thing. We should be glad, but instead we find ourselves in a tad of a panic. We’ve got some 200 eggs now in our mudroom, awaiting their hopeful future delivery. Good thing that eggs keep really well. Cuz it’s gonna take a minute to move em. Did you know that your regular, everyday white eggs that you buy at the store may be as much as a month old? And yet still, eggs are just as healthy to eat even a month after that. Truly, this is some miracle food. Our girls eat table scraps, glean what they can from the grass and nearby woods, and turn it all into eggs. I am continually impressed with their efficiency.

These days, however, the snowfall of a few weeks ago has caused an unforseen hitch in our business, Eggs of Hope. Because the girls can’t spend the day foraging in the grass, they now depend entirely on us for food. And that – crazy at it sounds – means we must provide nearly twice as much feed as before. And at nearly $20 a bag, 2 bags a week… well, you can see this has really become more of a hobby these days than a business. It’s frustrating, especially when I’m having difficulty just buying ourselves food, but for now we’re hanging in there. I went through my pantry and cooked up every bit of pasta and flour over six months old, I opened ancient cans of vegetables I knew darned well we would never eat ourselves, and I even added a few scrambled eggs into the mix. Yup, the girls love eggs. And chicken too. ! Hey, whatever works. They are the world’s very best recyclers, of that I have no doubt. Daily I stand in awe of the miracle of a hen and her magical egg.

We sure do have a lot of magic in our house right now. Happily, we’ve got some new customers, and I’ll post some flyers in town, send out some emails. Should be able to move some if I put a little muscle into it. But still, Elihu and I have both been thinking lately that we might need to adjust our strategy a bit. We’ve had a couple of folks ask us if we sell chicken, and while we do eat our own chickens, it might not be a bad idea to step up the meat sales too. Last night Elihu and I spent nearly an hour going over numbers, ideas… I just love that he is so thoughtful about our process, so careful to consider all our options. I am so incredibly proud of him for having such a good business sense about it all. He’s just as mindful of the details as I am – and honestly, sometimes even more so.

And I’m also so very proud of him for being the farmer I myself can’t quite become. When we decide upon butchering all the non-layers next week, I hesitate. It was our original plan – how can I be getting sentimental now? I knew that the old girls were freezer-bound. I just find that it’s an honest-to-goodness personal challenge for me to follow through. But Elihu? Not a problem. In fact, he’s the one coaching me. Telling me that we tend to anthropormorphize them. That they may be individuals, but in the end they’re not that smart. They don’t return our affection. Or at least necessarily remember us from visit to visit. They are simple creatures, he tells me. They know we feed them. They’re funny to watch, and yes, he agrees, we love them…. but they’re just chickens. And after all, he tells me, they were domesticated for this very purpose. Sheesh. All right already. You’re the bigger farmer than me, it’s clear. Ok. Let’s do this thing.

So tomorrow, we’ll vent our chickens. Check out their rears, their egg-laying holes, to see if they’re wide enough to be passing eggs, or if they’re in a dormant, non-laying state. We know that if we have 42 hens but we’re only getting 27 eggs a day, 15 gals aren’t doing their job. And that makes em dead ends. Feed goes in, nothing productive comes out (and what does come out just adds to the mess and future cleanup!). We’ll vent em, paint a big white X on their back if they’re not up to the task, and plan to move em out. I’ll call the Amish farmer on Monday to see when he’s butchering. Then Elihu will help me gather and box the hens up, and load them into the car. I may take him out of school that morning to help, maybe not. It used to be a big deal, a special event, but now, not so much. He’s so nonchalant about the whole thing. Now he knows they meet with a speedy dispatch, and that’s all that matters to him. That they have a good life and a quick, humane death. Like I said, he’s a real farmer. And one with a good heart. A very wonderful combination.

I’m trying to stay focused on our new plan. We need to cull back our numbers over the winter to reduce food costs during the snowy months. We’ll sell our meat birds in mid fall, restart the flock again in the spring (as we do every year with 24 eggs in our incubator) and then start the cycle over. Near the start of fall, as it genders become evident, we’ll butcher the boys as well as the girls who aren’t laying well anymore. We’ll keep the youngish gals and a resident rooster and then just do it all over again.

This is the plan, and although it’s been our plan in years past, we’ve yet to see this process through an entire year without hiccups. Seems there’s always some situation that arises to interfere… but I feel good about 2013. We have both learned so much together these past four years, and I feel we’re much better equipped to see our business through a successful year. Elihu and I both think that this is the year Eggs of Hope will reach its stride, get its groove. Just need to make a couple nips and tucks here and there. (Our nips and tucks will be a hell of a lot easier to make than what Congress has ahead…) That should do it. Will let you know…

The Hillhouse

The Journey of a Mother and Son

Tag: Achromatopsia