The Hillhouse

The Journey of a Mother and Son

Paradox of Poverty May 30, 2012

As we were first hit with instense heat and humidity this morning and then tropical-style storms in the afternoon, I spent much of today inside tending to office tasks, one of which was to research how to get my brother on Medicaid so that we might help him lift himself out of a deep and bottomless depression. He’s been out of sorts for almost all of his life. He is a hoarder, a hermit, a social recluse and an angry, dry drunk. Until this week. He’s started drinking again, and this time I had to take action.

These days I am poor; regular readers know my plight – yet I’ve worked to glean what help I can from the systems that have been set up to help folks in my position. Through state assistance I’ve kept us fed and warm. But it was not entirely easy. I’ve often said that being poor is a part-time job. It takes a certain drive and tenacity to fill out all the necessary forms, make and keep appointments with case workers, let alone travel the distance to simply get to the office to which you must apply in person. My brother isn’t able to do any of this for himself. And he really has no true advocate to help him navigate the process. Our mother loves him dearly of course (what a new perspective I have on this situation just considering how I might feel were Elihu one day in Andrew’s position) but her role in this has been to feed him, to keep him alive. That is also, sadly, the role of enabler. Shortly after I moved here and learned the ropes of the social services world,  I got Andrew set up with food stamps. He’s long since let them lapse. Easy to do when mom is making his one meal a day. So today my mission was to re-establish his food stamps and get him some health insurance. It was a project perfect for the day’s inhospitable weather.

It’s ironic that the people who need and qualify for assistance can’t often muscle through the process required to actually get the benefits that were created for them. Those who love someone who is mentally ill have their hands tied; unless the person in need makes the effort to get help, none will come. To get help requires a 911 scenario, literally. All the folks I’ve talked to today told me again and again that the only way to get him hospitalized was to call 911 at his next violent episode, and he would be taken to the ER. This is nonsense! You mean to tell me that we can’t stop the train before it leaves the station, but instead we have to wait til it rolls off the tracks at high speed before we can get help? If the troubled soul can’t do it on his own, the laws prevent anyone else from doing so on his behalf. I can understand it’s designed to protect that person from being placed in a situation against his own free will, but often those who are so badly off can’t fully appreciate that they need help. And so they will rarely volunteer themselves to the appropriate programs. I mean really, if someone is depressed and can hardly wake up, get dressed and feed himself, can we expect him to have the drive to jump through all those hoops? No. And so today I began to navigate the labyrinth of the system so that somehow, through some tiny window I can manage to coax my brother into the help he desperately needs. It was a good day. I did find new resources, new tactics. Hopefully by this time next week Andrew will be in a hospital and on his way to a much healthier and happier version of himself. There are rules, laws, protocols, yes – but there’s also the power of a strongly motivated sister who loves her brother and will keep swingin til she hits a line drive through a break in the defense. We’re much closer today than we were yesterday.

And as for my own paradoxes, they have me a shakin my head. Recently, we were at risk for losing both our electricity and then our phone and internet. And I simply did not have the money to pay them. I was desperate, and pleaded with the woman not to shut off our power the next morning (by some divine intervention the cutoff was postponed 12 hours due to a technicality.) I gave up, accepted that we’d be camping for a while, then hung up. But then it hit me: I have a legally blind child living with me. I called back. Asked them what if I had a blind child in the home? What then? You know what? The whole game changed. Because Elihu is legally blind, the electric and cable company have rules in place to keep our services in place for an extra grace period. !! What a flash of inspiration – but how ironic. My kid can see, but imagine the irony of a totally blind kid having the lights cut off. Not such a big deal, huh? Made me laugh. Course then I pointed out to the woman on the phone that a child without any disabilities still needs to eat just as much as the blind one – and ya can’t do that without power! No fridge, no stove. Ya know? Crazy. But if my dear son hadn’t been ‘blind’, we’d have lost our services. Thanks, kid.

There’s another side to the paradox of poverty: the poor man’s diet packs on pounds. When you have a tight budget for food, what thrifty staples come to mind? Ramen? Pasta? Dry beans? Rice? Bread? Yup. Those things are affordable and can last in a pantry. Fresh produce? A luxury. Meat? We can’t both afford to eat it. At the start of each month when my food credit is given to me, I always go overboard on produce. I am renewed, hopeful. This time we’ll eat right. And it feels great to buy my son his favorite blackberries and grapefruits, my favorite arugula and broccoli. But I simply can’t keep it up all month, for by the second week I’ve spent more than half the month’s food money on produce. Mid month I pull way back, and some days we skip the fruits and vegetables so that we can buy meat. You’d think I’d have figured out how to even it out – so that we have more of a healthy mix throughout the month, but alas, I haven’t. And there’s never enough to make it four whole weeks. So in the end we’re back to pasta, ramen, bread. Ich. Poverty and pounds seem to go hand in hand. At least for me. I have to figure this out. I’m poor, yet you couldn’t tell by my girth. Or maybe you could. Yup, it costs more to eat right. To eat well. So here I am, like the old 80s song lyric  “under nourished and over fed”. What an insightful man that Rick Springfield.

Surprisingly, poverty has made some things possible that otherwise might not have been. The big one – the biggest, most positive change in our lives might not have been open to us had we fallen in that nether land of the not-quite middle class. I don’t think Elihu would be attending the Waldorf School had we had just a bit more money in our budget. Seriously. He’s there precisely because we are poor. We easily qualified for generous tuition assistance.  I think of that often, and it has me reconsidering whether this great change of life might not have come with some incredible blessings.

Also, we live on a gorgeous piece of land. I’ve found business cards in my mailbox asking me to contact them should I ever want to sell. People casually tell me to remember them if I change my mind. Forget it. This corner of the world might be the best blessing of em all. Again, there’s an irony here too; while I look out to a great vista and can see no neighbors from my spot, I cannot afford to cut the grass, so it shortly becomes covered in knee-high grass. The grass grows tall around my lawn chairs and sometimes hides the rim of the trampoline. Looking out I sigh at the disparity between my inner vision of what this place could look like and what it looks like now. Elihu, however, loves the grass. It makes the place feel magical to him (consider how tall the grass must appear to him!) and almost always cries when I have it cut. Last time I had the place spruced up for his party, he followed the lawn guys around pointing out clusters of flowers to avoid as they mowed. So he’s happy, that’s for sure. So for the time being, I try to look at this as a wild meadowland. Changing how I think about it, I can appreciate it much better, and it takes away some of the guilt I can feel about not keeping the place up as I would if I had the means.

There are a couple of things that act as great levelers in the world: becoming poor and getting sick. All of a sudden priorities change and whatever might have been a mere detail of your old life-as-usual now becomes a treasure, an extravagance even. I may have had an idea of the value of things in my own world long ago – but until I was faced with the prospect of having no food or heat, I didn’t fully appreciate how good it is to have those things in place. I know the true value of simple things now.  I also have arthritis in my fingers these days – it seemed to have really gotten much worse over the past six months. Now my hands often ache. So on days when they don’t – oh how happy I am! I know how wonderful it is when your body works without a hitch.

A little change of circumstance can bring out a healthy change in perspective. I would never have known the deep joy of gardening or raising chickens or building things with my own hands had I not been thrust into this life. I’d never imagined myself living a life other than the middle class white suburban experience that I’d always known. But man am I glad I’ve had this chance. I’m poor, but I’m not. Crazy, huh?

 

Makin Up May 26, 2012

Thanks. I knew I had to blow off some steam, and really it felt good. I liked typing the f word over and over. And as I drove to the airport, I stewed. I know it’s not healthy to stew all the time, nor a lot, but every now and then it just feels good. I was pissed. But, as I kinda thought I would be, here I am the next sunny day feeling better.

After I got Elihu to his plane things went well. Many unexpected little pleasures en route home, not the least of which was an art exhibit in the observation tower at the airport, complete with wine and hors d’oeuvres.  I was tipping back the last of my pinot noir as I watched Elihu’s plane finally leaving the ground. Got a voucher for free parking too. Not a bad start to the weekend. I figured it might be a good time to stop pouting.

Called a new friend who lives here in Greenfield not too far away from us. Her seventh grade daughter was having a lousy time at the over-populated middle school and so she too had just started attending the Waldorf School of Saratoga. We share rides; her mom takes her and Elihu most mornings, I pick em up at the end of the day. Works out well. My neighbor was home, and must have read the ‘poor puppy dog’ in my voice cuz she invited me over without hesitating. It was a nice hang. Nice transition to the time alone before me.

Awoke to an amazing, absolutely unexpected gift from an old friend, and that gave a great lift to my spirit. Just being remembered by folks is nice; being so physically removed from people as I am here, it makes it easy to think I’ve been completely forgotten. After all, I myself can hardly remember my old life some days. Kinda feels like a movie I saw once.

I haven’t done much today but piddle about. An old friend of the Conants is driving to D.C. from Canada today and is stopping by my folks’ for lunch. That will be very nice indeed. My mother always presents the loveliest spreads you ever did see, and the simplest dishes become the tastiest. That’s her thing. It’s more than a thing really, it is a talent. These kinds of meals are becoming a rarer thing as my parents age (and especially now that dad’s Festival of Baroque Music is no longer happening; gone are the opportunities to feed the musicians and their families) and so I’ll savor the moment for sure.

I’ve spent a little time outside today too. Filled up my little rigid plastic kiddie pool – but quickly forgot I now shared my property with a goose. As soon as I’d turned off the hose and come back around the house Max was already in it, swimming about and enjoying himself tremendously. I don’t so much mind this, nor do I mind being in the water with a goose, it’s just that he poops a rather liquidy sort of substance that will foul up the water in no time. Thinking quickly, I run to the basement to get an old bedspread, which I drape over the pool. I realize it won’t work as I’d initially thought as it sinks down into the water rather than covering it, but then a second idea comes to me: the cloth might act something like a ‘pool condom’. If Maximus poops, it will stay on top of the cloth, and by lifting the fabric I can lift out the poop. Most of it. I hope. It looks like it’ll work. I’ll let you know.

Here are some pics from my day so far. Hopefully it will offer me a clean start after yesterday’s rant. (Readership was through the roof though. What is up with us humans? We love drama, don’t we?)

Maximus and me

Maximus eyes my pool

… then gets in

… and later follows me back to the house.

If I ignore him, he’ll start knocking on the door. No kidding. It was cute for a while. Not so much any more. Will have to figure out a solution.

(Yeah, I know, how about a fence?)

… and finally, handsome Mr. Bald Mountain.

The rooster who never lets you forget he owns the joint.

 

F*ck This May 25, 2012

In kind of a self-sorry funk today. My May support never arrived from Fareed, and here it is nearly June. I can’t pay my phone bill and may not make it the weekend without my internet, cable and phone being cutoff. I fucking hate being so dependent upon someone who doesn’t care. And I won’t have my son here this holiday weekend to distract me from my mood. Elihu gets on a plane today and joins his father – they meet at O’Hare. Dad gets in from London and Elihu from Albany. Hope it all works. Can’t fret about that. It’ll be fine. Now my kid has a watch, a cell phone and a good book. And good sense. He’ll be fine. As for me, I’m left with lots of pasta in my pantry, but just about five bucks in my pocket. And I’m pretty pissed about it.

I am sinking today, I admit it. I’m angry at Fareed for leaving. I’m angry that he had another woman pregnant at the same time as me. I’m angry that he CCs me on emails that rejoice enthusiastically in the “family all being together” when he talks about plans for our son, his girlfriend, their kids and my parents-in-law to have dinner at the Pump Room in Chicago. I’m angry at his parents for not caring how we’re doing, for not offering to pay for half of Waldorf. I’m angry at myself for having no life outside of being a mom. I’m goddam tired of having a fucking rooster crow in my open window all fucking day long and not having the bread to fence him in properly. I’m tired of being two dress sizes too big. I’m tired of being poor. I’m tired of having no friends, tired of having no life. I miss making music. I wish I could play my Wurlitzer again with a band. I fucking miss the world I knew. Been here four years this coming August, and I still have no appreciable life to speak of. My son does – and this, of course, is the current priority – but I myself have little to look forward to, little to do that I enjoy. It really seems like all I do is the goddam dishes and the goddam laundry. I so wish I had a dishwasher. Must spend an hour a day washing goddam dishes, and seems there’s laundry every day. The only social life I have is when my piano students and their families come by. If it weren’t for them, I could go weeks without seeing another person besides my son.

Today I’ve fucking had it. And about the only thing that feels good is typing the expletive “fuck”.

I know I’ll feel better when some money arrives. I got paid for a lesson last night, and for a moment I almost felt as if I could breathe better. But it’ll barely pay for the gas to get to and from the airport today. So for the long weekend I got nothing. Not that I need it, I really don’t. And that’s the crazy thing about all this. When I think about it, having  money or not is really all kind of abstract and makes no true sense. When I know I have no money at all, my whole being gets bummed out, depressed, deflated – and the future appears to hold no promise. So then I get some cash and somehow – it is indeed all an abstraction, an illusion – I feel better. My whole being feels lighter, less threatened. But in reality, the influx of money isn’t much; it doesn’t actually accomplish a lot. If it takes away the threat of having my electricity cutoff, that’s understandable, and if it replenishes my supply of toilet paper, that’s good too, so there are some tangible reasons for its ability to lift my spirits. But beyond that, it’s really only illusory. Nothing amazing and truly life-augmenting will come of the new cash flow. Yet somehow, it lifts me from my funk. It carries me, buoys my spirit, makes all things suddenly seem possible. It restores hope. Crazy, huh? Yes. Crazy.

I need to rise above this crap. But today, being hopeful and upbeat is not my natural state. Plus I thought there was so much happy talk here that it might not be such a bad idea to temper it with a post that was probably more in line with my mood much of the time. Yes, I’ll turn it around, and no I don’t live like this most of the time – but the poverty thing is always present, and try as I may to pretend I’m feeling great, doing ok and fed and clothed, etc, deep down I admit I harbor a bit of resentment about not having what I’d like to have – what I used to have. And I should be ashamed, I’ve got it good. My child and I aren’t hungry, we’re warm, clothed. I have a grand piano and my son has a fleet of RC helicopters. By some luck, for being broke, we got a lot goin for us. Yes, I know this. But today I’m indulging. Just today.

I’ll be back to hopeful again tomorrow. I promise.

 

Advocate for an Achromat May 22, 2012

It’s been over a month since Elihu has seen his father, and until last night it had been over a week since he’d spoken to him on the phone. Recently Elihu’s been keenly missing his dad; there were several over-tired moments this past week when he would simply weep, repeating over and over that he ‘wanted his daddy’. Heartbreaking as it is to see this, there’s little I can do to help but to gently remind him that he’ll see him soon. Sometimes my saying anything actually makes it worse; sometimes the only thing I can do is watch him in love as he cries, reminding myself it won’t be forever.

This week Fareed has been unreachable, as he was in the Netherlands and was busy with concerts and teaching. Elihu jokingly renamed the country the ‘Neverlands’ because it seemed like his father was never coming back. But finally, last night, after some frustratingly protracted issues with bad internet connections (resulting in more tears) Fareed was able to Skype with Elihu from his stop over in London.

Elihu, as some may know, is afflicted by a disorder of the retina which makes seeing in bright light impossible. He is most comfortable seeing in 25 watts or so of light, even 40 watts can be too much, making him have to squint his eyes in order to see. I have done my best to create the most comfortable atmosphere possible for him here at home, covering much of the windows with a plastic tint, using low wattage bulbs in all the lights, keeping the computer screen on the lowest brightness setting. (My college education as a film major taught me that the bright light of the outdoors is not simply ‘much brighter’ than artificial, indoor light, but that it is exponentially brighter. For those of us who see normally this is almost impossible to really understand. But it is so. Imagine then the challenge Elihu has in existing in this bright, bright world.) The camera on his computer requires a bit more light than he is comfortable with in order to make his image visible on the other end of a video call. To make sure he can be seen on the other end, we often open up the curtains on the picture window in the living room. It’s bit too bright for him, but so is the whole world; it’s a tiny price to pay for a conversation with his father.

Last night, when we finally had a connection established, I lingered a moment to make sure they were up and running before I left the room to give them some privacy. As I was turning to leave I heard Fareed’s first words to his son. Laughing, he asked why Elihu was squinting. What?! I thought – did he really ask Elihu this? Seriously? Elihu responded by saying he wasn’t squinting. The poor kid has to do it so much that often he honestly doesn’t even realize when he’s doing it. Sometimes too he denies it because he hates it when people mention it. He’s just doing what he needs to in order to see, to function. So this is his father, his loving father who knows his situation better than most – why in hell would this be the first thing he says to his son? And why did he laugh when he said it? I felt the implication of his tone – it was almost mocking, at the very least it was incredibly insensitive – and Elihu felt it too. I was instantly livid. What a stupid prick, I thought. Man, what a fucking prick. Elihu had it in hand. “I have the curtains open.” he answered his father. Was it me, or did I detect a smaller voice, a meeker than usual tone? Is he a little caught off guard, as was I? Or am I over reacting? I stay a moment more to hear what his dad will say next. Fareed continued to chuckle while he said something more about how much Elihu was squinting – implying it was somehow too much. Really? You haven’t heard from your son in over a week – you send emails and voice mails about how much you miss your son – and this is how you kick off your first visit?? I stood there getting angrier. But again, there’s nothing I can do. Can’t intervene, don’t want to highlight it anyway by doing so. So I take a breath and leave the room. Elihu can fend for himself. Just wish he didn’t have to do so with his father.

People often ask me when I truly knew that there was something ‘wrong’ with Elihu’s eyes. I can tell you the exact date. It was Sunday, August 24th, 2003. Around eight pm. I remember this date because across the street my neighbors were having their usual Sunday night dinner, and Studs and Ida Terkel were among the many guests. It was always a group of interesting people; artists, writers, thinkers, musicians, teachers. I’d intended to go too, with my beautiful new baby in arms for all to see, but the night was not going as planned. Beset as I was with an unhappy baby, I soon forgot about the party. My whole focus that night became instead about calming my unsettled child.

I was alone in the house. Fareed, as he was most of the time, was somewhere else. Elihu had been a colicky infant and that particular night had been a difficult one. I was frustrated with Elihu, and the only thing that seemed to calm him was moving him – bouncing, swaying, rocking endlessly. He’d quiet for a while, then start up screaming again. I was careful to hold him close to me as I swayed back and forth, images of shaken baby syndrome fearfully warning me not to move too violently. I rocked our bodies back and forth, back and forth, back and forth. Truthfully, I was angry that it took this much to quiet him. That night I was losing patience. I rocked us both harder and harder. It wasn’t working. Just what did I need to do to get this baby to feel better? I was at my wit’s end.

I remember the scene well; we were in his tiny, dimly lit bedroom with the 1950s Swedish-designed wallpaper and the tall, exposed wood beamed ceiling and I was trying to get him to bed. I remember pulling him away from my body after I’d swung him, sitting back down in the rocking chair and looking into his face. His eyes were trembling. His irises were wiggling. Oh my God, I thought. I did this! I did this to him! I was flushed with adrenaline and an instant, profound fear. I had shaken my baby after all, and now his eyes bounced. I must have done this, mustn’t I have? His eyes weren’t like this a few moments ago! I asked him to forgive me, I told him that he would be ok, nothing bad had happened. I told myself he was changed for life and that I had done it. I alone had ruined it all because of my impatience, my anger and frustration. I told myself I couldn’t possibly have done this, I told myself he was fine, this would surely pass. I told myself a million things in the space of a minute. I tried to calm myself, to soothe my baby, to think logically. I sat and waited. I thought about it. I had a deep, undefined nagging feeling that there was more to this than I knew. After all, I’d known something was ‘wrong’ with my child even a few months earlier. But I alone had felt like this – not even his father had shared my vague but real concern in those first few months.

When Elihu was just two months old I knew that something was amiss with him. Something. But I could not figure it out. I did, however, notice that when I took him outside for walks that he would scrunch up his face and turn to the side, hiding his face as best he could. He would never open his eyes to people on the street, yet once inside a darkly lit coffee shop or store he would blossom, eyes now open, finally alert and responding to his surroundings like a normal baby. But just as soon as we were outside again he would transform. Knowing what I do about light and its properties, I’m surprised that it took me so long to figure out that light itself was the main problem. (An ironic situation too – we lived in a mid-century house with a twenty foot ceiling and an enormous, south-facing wall of glass in our living room. To say that the room was always well-lit is an understatement.)

After that August night Elihu’s eyes continued to bounce and wiggle, and soon Fareed shared my concern about its cause. I came clean about his colicky night and how I’d rocked him so hard – but we both didn’t feel this was the culprit. After checking with his pediatrician, a couple of months later we took Elihu to Children’s Memorial Hospital in Chicago to have an MRI in order to rule out a possible tumor in his brain. It could be a tumor that made his eyes wiggle. Or it could be an eye disorder; it might simply be Nystagmus – or it could be Achromatopsia. And if it was Achromatopsia, there were many kinds.  There was still the chance that he might see blue. Maybe yellow. We wouldn’t learn that until later. Of course, we hoped for the eye disorder and not the tumor. But when we learned that it was the latter, I myself didn’t find relief in the diagnosis, but rather felt the weight of our life’s course – our son’s life course – instantly changed. My heart was broken for him. I remember standing in the lobby of the hospital with tears streaming down my cheeks. I also remember thinking how foolish I was, how selfish. Kids walked by, rolling their IV poles alongside them, other kids with shaved heads passed by us, visiting with their families, happy and being children. My God, I thought, some of these children may not even know if they’ll even live to grow up – I am lucky. Elihu is lucky! I should be ashamed of myself for crying! This is crazy… Yet all I could think of was magenta and green. My favorite (albeit visual guilty pleasure) combination of colors. One of the things I couldn’t wait to share with my child. The pinks and greens of spring. My son would never see them. To me this was unthinkable. When we used to play that game as children, asking each other whether we’d rather be blind or deaf, in spite of being a musician myself, and a girl who spent hours and hours lost in her LPs, I would answer ‘deaf’ without hesitation. Silence I could take. But never to see color? No. Too much to take. Yet here we were.

Long before a child can speak, it’s apparent that the child can understand, and the child can communicate in many non-verbal ways. When Elihu was about a year old, I began some informal experiments to learn better just how much he was understanding – more specifically, what might he understand about color. We had a group of large plastic blocks in primary colors. In that Elihu was developmentally on target in every way, I knew he’d be able to distinguish these simple colors from each other, even if he couldn’t verbalize it. I’d make piles of yellow. Of red and blue. Then I’d repeat the color over and over, hoping he’d make the connection. It was absolutely mystifying to me how clueless he was about it all. He seemed to get yellow – and he’d often successfully place the yellow block I’d give him with the rest of the yellow blocks. That I got, after all yellow is much lighter. (We always used to say “yellow is bright, it’s almost white” when we were assigning values to different colors.) But the red and the blue – so clearly different to my eyes – seemed to be indistinguishable from one another to him. Over and over I repeated this with never any improvement in the results. This was the period in which I began to accept his vision as quite different from mine. The period in which I began to educate myself. The time in which I began to feel different from the other moms.

Fareed wasn’t around much – he taught in a far away town, and when he wasn’t teaching he was often touring. I’d always felt it was the two of us, Elihu and me, waiting for the time in which Fareed would tour less and be with us more. But until that time came, I knew that my life’s main focus was to to raise our son and to give him the help he needed to function well in the world. Naturally I did everything I could think of to make Elihu’s life in the world easier. I’d cut and glue lenses together from several pairs of kiddie sunglasses in order to make a pair dark enough. It didn’t work. The outside world didn’t exist in any meaningful way for us the first two years of his life. Fareed tends to think much like his father when it comes to existing with a handicap; make no special accommodations for the person, and keep your expectations of that person high. A sort of ‘pull yourself up by your bootstraps’ mentality. And while I know Fareed’s father to have helped some young, physically challenged people become successful adults through his mentorship, I knew this situation needed a bit more finesse. Fareed didn’t always agree with me. He just wasn’t as bothered by Elihu’s discomfort as I was. Frankly, he was probably too busy with his life to give much emotional energy to it. I, however, lived with Elihu every day and knew in my gut that we needed to fix the situation. It was bad enough being isolated by virtue of being a single mother at home, but not being able to go outside made it worse. I don’t think Fareed quite understood it. But I did, and made it my job to find a solution.

I can’t remember how I found Dr. Derrald Taylor but it was life-changing for us. I remember the three of us going to the Illinois School of Optometry on the south side of Chicago on a windy and sunny summer day. As usual, I’d had a hat on Elihu and carried him across the parking lot, although at over two years old he could have walked. He could have – had he been able to see. But he was essentially blind when outside. Until that day Elihu had not yet walked outside without a hat or guiding hands nearby. Dr. Taylor was a low vision specialist, and before that day I don’t think I even knew the term. I was full of hope that morning, but yet nervous and concerned that we were searching for a solution that didn’t exist. Fareed was his usual self, cheerful, charming and collected – nothing on the outside belied any concern on the inside. Dr. Taylor was peaceful and measured. He was not in a hurry. He had a wonderful, gentle demeanor. He told me he knew exactly what Elihu needed. I hope he enjoyed the look on my face; I was stunned at his certitude. No one before had hardly even believed me – but here I was with another human being who truly knew what we were experiencing – how my son existed in his world. “I have three pairs of glasses. We’ll take Elihu outside.” “The sun is out – we can’t.” I countered, my heart sinking again as I knew it was too good to be true. Dr. Taylor reassured me, and lead us to the courtyard. Although I’m not sure why, a nurse had also come along with us. As we neared the glass doors I picked Elihu up and he turned his face into my shoulder. The five of us stood under an apple tree and Dr. Taylor handed me a small pair of red plastic framed sunglasses which I put on Elihu. He couldn’t lift his head far. “Nope.” Dr. Taylor said. “Try these.” These were darker, and Elihu could now lift his head – all the way up. I had never seen this before. I began to get excited. Still, he couldn’t walk anywhere. “Ok. Try these.” Dr. Taylor handed me a third pair, they were the darkest glasses I had ever seen, and I put them on Elihu, who now stood on the ground by my side, waiting. Immediately, it was as if a curtain had been pulled back to reveal a huge world beyond, and Elihu, in the true and natural spirit of a toddler ran out into the grass. Joy burst open inside me and I started crying. It was so sudden – so perfect… My heart was full, and I was overcome with relief. I looked to Fareed – I’d thought he too would be crying for joy like me. I was surprised that he was not. I looked to my right, and the nurse who stood beside me was crying too – we nodded to each other, smiling through our tears. As taken by the sight of our child walking unassisted as I was – outdoors on a sunny day no less! – I felt a hint of disappointment and curiosity even, as to why my husband seemed so much less moved. Had we not been on this journey together? Had he not felt anguish for his son? Had he not spent hours upon hours fretting over Elihu’s problem? Maybe he felt it but it just didn’t register on his face. I didn’t get it. But it would have to be set aside for now. Elihu was running! I was amazed, I was thrilled. I could breathe now. Elihu could finally go outside. We could join the world. For me this felt like the true beginning of our life.

I know Fareed loves his son. I also know that Fareed doesn’t tend to show his true emotions – he certainly doesn’t wear them on his sleeve as I do. But still, I’ve often wondered about that day. I may have asked him once about it – if I did, I didn’t get any answer. I do know he’s a good father. But I just have this tiny gut feeling that on some level he doesn’t get it. A few months ago Elihu left his only pair of dark glasses in Chicago and they had to return on the train without them. Elihu is a trooper – and made it without complaining (he’s also not stupid – he knew damn well it was his own fault and so therefore kept his mouth shut.!) but Fareed seemed almost surprised when he recounted to me how he’d had to “lead him by the hand while he walked with his eyes closed”. Yeah, I know. You surprised? I’m not. And while I won’t coddle my son, I also won’t pretend he doesn’t have unique needs. I’m doing everything I can to make him feel that he’s not different (he’s almost like an adolescent girl in his over zealous aversion to appear different from the norm in any way) but I’ll always make sure he has exactly what he needs. I will always try to level the playing field in any way I can. Part of that advocacy is also about acknowledging that he is different – but then moving on to live beyond it. It’s important not to pretend the handicap doesn’t exist! But then it’s equally important not to call undue and extra attention to it.

Some days I may lament being a single parent to an only child, but some days I thank the heavens that I have been given the gift to be able to look out for my child as truly no one else can. I am free to help my son as he needs. I don’t have the burden of having to check with his father, to wait on outside approval before I take action. If I think we need to drive thirty miles to see a low vision doc, then that’s what we’re doing. If my kid needs glasses, I’m going to find him the best, darkest damn glasses possible. I’m going to make it better.

Yeah, I can tell when my kid is squinting, when he’s having a hard time seeing, but he’s doing what he needs to do, and I’m going to let it be. He knows what he has to do. So do I.

 

In Day, Out Day May 13, 2012

While the weather report told us today it would rain, so far it’s been a sunny and very warm spring day. Finally, finally I am without commitments (we’d had mid-day lunch plans that fell through just a few hours ago) and I can address the large patch of soil that will hopefully become our garden. Our very first real garden.

I involved Elihu in the preparations, cutting and winding twine, collecting stakes, poles for our beans and such, but when we began our walk down the hill to the garden he left me and ran for the chickens. I expressed my frustration that he’d already played with the chickens this morning – in fact he’d already had one in the living room – and we really needed to keep our focus and get to the garden. His reaction? Tears. An explosion of tears and sobbing and protests that ‘he just wanted to play with his chickens’ and then he turned and ran back into the house. He flung his shoes off dramatically and landed on his bed, still crying.

When something like this happens I admit my first response – the one that might feel the most organic and give me some feeling of control over the situation – might be to get angry with him, to try and explain to him why his outburst is pointless, his choice of leaving this project is immature, his need to play again with his chickens is silly. But I knew this wouldn’t net me anything. It wouldn’t get him back outside with me, and it wouldn’t make him any happier. So I took a breath, kneeled beside him where he lay on the bed, and I waited. I waited for him to tell me what was going on. “I don’t know why, but I just need to cry”, he told me. “I just want to get my pajamas on again and get into bed”. I guess I can understand. While we’ve had a great time the past two days visiting new friends and spending hours out in the world doing things, that kind of busy-ness, that amount of time away from home can wear on him. I could tell he’d had enough visits, projects, agendas, plans. And that’s just fine. At my age I feel a keen desire to use all the time that I can in the most productive way possible, but I am forty-nine. I didn’t feel like that at one time in my life. I can remember well when all I wanted was just a day to myself to stay in bed and do nothing. Maybe I was fourteen when I felt like that, not nine, but hey, if he just needs a break – then he should be allowed to take one.

I’ve come inside to see how he’s feeling – and to change into shorts. It’s a hot day, more like summer than spring. His father calls, and he jumps up and goes for the phone. An hour ago he didn’t want to talk to his dad either. Now his tone is light, he seems happy. Maybe a break really was just what he needed. I, however, don’t need a break. I need more time. More help. I have this crazy list that never ends, and I wish I had a pair of hands to help me get it all done. I do have an afternoon, and that’s a pretty big deal. Let’s see if we can’t both get what we want. He doesn’t want to be entirely alone, and in fact he’s had his heart set on making a certain paper airplane design for a while now, and it turns out he’s rather upset that the garden has taken precedence. So it looks like I’ll have to split my day. Before I can get to the garden, I’ll have to make a couple fancy paper airplanes at the kitchen table.

I remember it’s mother’s day, and I almost wish I could use that card to buy myself a time-out of mothering duties. But then again, is not what we celebrate today the very thing that I am doing? I am being a mother, and I am always grateful (although sometimes more than exhausted for it) that life has given me this priviledge.

So I’ll spend the next hour with Elihu, and we’ll see if we can’t make some of these pretty-looking planes. I’m not great with this kind of stuff – but I’ll do the best I can. I’m a mom, and it’s my job. I’ll figure it out.

Then after my inside day, I’ll go outside again to the garden. At least that’s what I hope I’ll do. Because that would be a nice mother’s day gift to be sure. But for now it’s off to to make a paper airplane or two… I need to give lil man some quality attention and focus. After all, the garden will still be there tomorrow after he’s back in school.

Inside, outside. Time with my child, time alone. All in its time and place.

 

May Day Pics May 8, 2012

Waldorf School kids dance around the maypole… complete with flowered crowns on their heads, recorders and drums playing… a delightfully anachronistic feel to the day.

Elihu in blue

Later that fine May day… glow-in-the-dark stars dry on the trampoline for use that night at the Greenfield Elementary School talent show.

Fifty stars in all. Lots of time with an X-Acto knife.

The beautiful and talented Ginley Girls sing “Sweet Child O Mine” in honor of their blue-eyed baby sister

The traditional half time chicken dance. Elihu is the pit orchestra and rim shot guy and plays along with the track. A chicken and a duck dance wing-in-wing on stage

In the vast field just beyond our house we discovered literally hundreds of these Comma Butterflies passing by… note the interesting, curvy silhouette of the wings

Orange and brown and pretty on the inside

Elihu smooches our gregarious hen, Thumbs Up

Hello, Thumbs Up!

One more surprise from the incubator

On May 7th, my 49th birthday, I realized that my childhood friend’s mother died at 49.  She seemed like a real grown-up to me back then. I don’t feel like such a grown up. Age and perspective. Interesting.

Oh, little Rose Breasted Grosbeak, we have waited to see you for lo these past three years!

 

Sunny Birthday May 7, 2012

Filed under: An Ongoing Journal... — wingmother @ 2:58 pm
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Is it possible to write a post in less than ten minutes? It will have to be. Thanks all for your kindness in so many emails and FB greetings. I feel so blessed and lucky to have so many well-wishers. I send you my gratitude… It’s hard to understand that I am now embarking on my fiftieth year here. !

My day has been lovely and unstructured. It is a fine, sunny spring day here in Greenfield. Not warm nor cool; today exists in that minutest fraction of temperate perfection so seldom experienced on this planet of extremes. In a word – the weather today is perfect.

After venturing onto some long-abandoned properties and digging up what I could find of flowering spring bulbs, I have returned home covered in dirt. The bus will be here soon, and shortly after Elihu comes home I’ll grab a quick shower before my piano students come over. This evening my parents, brother and son and I will go out to dinner.

This is what a birthday should be. Lucky gal am I.