Advocate for an Achromat

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.

One thought on “Advocate for an Achromat

  1. I’m only 30 miles away from my kids when I don’t have them with me. Seems like Neverland, though. And their mother tends to be apathetic about answering the phone when I call to talk to them…it’s always, “We were getting ready for supper,” or “They were getting ready for bed.” I get through sometimes, but she puts up deliberate walls (she feels like I’m being rewarded somehow in the break up by not having as much responsibility as her on a daily basis…as if leaving was completely my choice, and she didn’t *want* primary residential custody…”uh-huh”…and she didn’t drive me away with her apathy and acrimony toward me, lol…anyway, long story there). Your story always strikes a chord with me. We *are* out of tune (men compared to women) and we do follow our own paths to the exclusion of family, often. But, then again, I’d expect women to have a more intimate, intuitive bond with their children than men, considering the child is carried inside a woman for 10 months, and many are fed directly by the woman’s body. We’re just bystanders in many ways–we can never feel the same strength of connection as women. Women seem to assume we’re as perceptive and intuitive as they…and we’re not. We love deeply, and we can approximate that bond, but it’s a learned thing for us–we’re overgrown children, ourselves, wishing to be cared for (the main reason men cheat is for attention their wives no longer give them…we leave for the same reason–lack of attention–not even necessarily of a sexual nature–we need our egos stroked)…hence a 52% divorce rate…and 30 years of collected data re the effects of divorce on children–one of the primary factors in a child being low or high risk as a teen being–a high amount of parental involvement from both parents. I could understand a man who has children with more than one woman, or one who travels a lot, not being very adept at maintaining all the relationships in his life energetically enough, especially if he’s myopic about his career, but a simple phone call every other day at least, isn’t asking too much! I have two speeds in my life: one with children, and one without. When I hear how much Elihu misses his dad, it encourages me to make sure I don’t become absent in my kids’ lives. I have so many fears in that regard (her driving a wedge between me and them…someone replacing me…me losing my job and not being able to support them, etc). I hope Fareed gets his priorities straightened out for Elihu’s sake (he sounds like a major egotist to me–sorry!!!). The Internet and cell connections are available all over the world…it’s not 1985 anymore (sounds like he’s making excuses not to be more connected). But, I guess I shouldn’t judge. I *quantitatively* and objectively think he could step up his involvement, though. He’s sandbagging you and enjoying himself around the world. I don’t know how you could coerce someone like that into being more responsible, though.

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