“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.

Free Friday

Elihu has had bad asthma the past couple of weeks. That, plus the seasonal allergies – and last night a quick bout of 24 hour flu – have caused him to miss five out of his first twelve days at school. Might not seem like such a bad thing to those of us aren’t overly concerned about attendance (I myself remember once winning tickets to a Cubs game for having had perfect attendance at school one year), but Elihu has found himself now a bit more behind than he’d like in his schoolwork. Friday morning he awakes, still so very congested and weak from a night of heaving, so I take pity on him and let him rest. With one condition: that we do all of his schoolwork after breakfast. I have errands I must do later, but I assure him that I won’t do a one of them if he hasn’t finished his work. He agrees. So home he stays. One more day added to the list.

Elihu is more than a little concerned about how far behind he’s getting. I assure him that we just need to make a plan, a schedule, and stick to it. I tell him that I can only help him if he lets me. If he starts crying and complaining and stomps off – then there’s not a thing I can do to help. I need his cooperation. Is he with me? I’m committed to this – is he? I like to joke around a lot, but it is clear that I am not joking. He knows it, and he takes my hands, looks into my eyes and agrees to let me help and to cooperate. He’s concerned about his spelling assignment. Not that he can’t spell – quite the opposite – but it’s because he hates writing. The physical act of writing itself, as in pen to paper. He finds it tedious. I get it, I do. I reassure him that one day he’ll know the relief it is to type nearly as fast as he can think, but for now he must do it old-school. It helps when I remind him that hero John Audubon wrote all his notes – and manuscripts – by hand. “He didn’t have an old-fashioned typewriter?” he asks. I assure him that it was years and years before the thing was invented. I grab a Max quill from the kitchen window sill. “He did it all like this” I say, miming a quick dip into an ink well then scribbling on the table. Elihu’s eyes open with new interest. “If John did it, you can too” I smile, and thankfully, Elihu smiles back. We begin.

Elihu’s Waldorf class is studying Norse mythology as part of their daily main lesson, and we at home have been reading at bedtime from a book I was given when I was his age, “Great Swedish Fairy Tales”. A fantastic collection. He recognizes characters in our stories from his lessons at school. As his teacher has asked me to please find some more challenging spelling words for him, Elihu and I together pull out the book and begin to look… We agree on five, then he sits down at the kitchen table to write them out and use them in sentences. He strays after a few, I allow a small break, then he’s back to the task. In about forty minutes he’s done.

The greatest cause of his stress is his book report. Thing is, he and I read the book over a year ago. It’s old news. In fact, Elihu loved the book so well he re-read parts on his own throughout the year. This should be a friggin piece of cake. Yet he is as stuck as can be. I watch him, frustrated. I see him watching everyone else in the class pass him up. Even more behind than he was, he despairs of never being able to catch up, and stops altogether. The class is on chapter seven, and he’s still on one. ? He sobs to me his agony about never catching up. I promise him that he just needs to follow a plan. Ok? He sniffs and nods. We make up our minds to knock out the first two chapters, but then realize the silly book is at school. My heart sinks. We call the library. Their only copy is out. I ask for one to be couriered from another library. It’ll take a couple days. Well, I don’t feel great about it, but for now, this part of his homework is on hold. I agree that he’s done what he can, so after he does his morning nebulizer treatment, we can go on our errands.

As we wind down the lovely country road behind our house on our way to town, we see that the tiny railroad crossing lights are on – a very unusual sight. But we know that the tiny Delaware and Hudson line has been recently restored for a northerly tourist run (in fact a good friend is now conductor on that line) and so we do see a small train pass by every now and again. How lucky we are that one is coming now! We pull over and get out. There aren’t any warning bells and no train is yet audible, but Elihu freaks out anyway when I walk up to the tracks to investigate. “Please come back, Mommy!” he shouts. “I don’t want to lose my only Mommy!! Please come back!” So I do. We wait a minute more, and then we begin to hear a distant rumbling. I have an idea. I run to the car, find my purse and rummage around on the bottom. I find one single penny. Perfect. I run to the track as fast as I can, find a good spot, then lay the penny down. It’s all happening so fast – the sound of the approaching train, my running back and forth – that Elihu doesn’t say a thing, he just watches, his intrigue winning over his concern. I manage to run back to him just as the blue and yellow D & H engine comes around the bend. We wave to the engineer then to the few passengers in the dome car. It’s a small train, and it’s rumbling down the track in a cloud of diesel smoke within seconds. As it clatters away and the tiny crossing gates wobble up again, I run to the spot where I’d placed the penny. Nothing. If it hadn’t been for my experience in Dekalb, Illinois where dozens upon dozens of trains pass thru the tiny town daily, and all of the coins I’d practiced smashing there, I’d have been dismayed. But I wasn’t. Looking closer, I saw an imprint of a circle on the track, and a few inches away, an imprint of an oval. Elihu joins the hunt, and we widen our search. Finally, there it is. I coach Elihu to find it himself. He laughs when he first spots the oval sliver of copper in the gravel. We take it back to the imprint and lay it down; it matches the outline perfectly. Earlier that morning Elihu had been lamenting the fact that he remembered so very little of his younger years before we’d moved here, and that he felt he’d forgotten so many of the things he’d done. He was worried he had so few precise memories – his past all seemed to wash together. He wanted clear and distinct memories, specific stories to pass on to his own kids one day. This is the first time he can recall squashing a coin on railroad tracks. “Now, think you’ll remember this always?” I ask, hoping he’ll easily agree. He laughs. “And keep this coin. You can show this to your kids one day. Plus you can show them exactly where it happened. You’ll always have this memory. Always.” He is happy. He continues to marvel over the whisp of a penny as we get back into the car and head on our way.

Our day is lovely, the weather is sunny, mild and breezy, and walking hand-in-hand, we move through our day at a easy, gentle pace. Register my folk’s van at the DMV, find a ladybug (who may well be a male, Elihu reminds me), get a few groceries, pickup a gift card for a birthday party and get a new timer for the coop door. Our final stop is in the mall parking lot where we are going to feed the seagulls. This is always a nice little extra in a day. We pull into a far away corner of the mall parking lot and begin to throw tiny bits of bread outside the window of the car. We open the windows and turn the car off so it’s quiet. One flies overhead and then swoops down. Then another, and soon there are a half dozen seagulls swooping down just feet from Elihu’s window. He sees them close up, hovering, swooping, even snatching pieces in mid-air. (Sometimes we’ll put bread on our sunroof and watch them from below!) I miss Lake Michigan for many reasons, seagulls are one. I used to feed them on the beach where I lived, and have images in my memory of dozens hovering only feet above me, just hanging in the wind… It saddens me that people now think of them as pests. Hey, it saddens me that people think of pigeons as pests too. I like to think they are incredibly resourceful. Good for them to figure out how to make a living from our waste. (If it helps you to like pigeons better – just call em doves. Pigeons and doves are the same thing, it’s only context and culture that makes us think of them different creatures. If you aren’t convinced, just look it up for yourself.) The birds eat their fill, so we head out. The sun is now much lower in the sky, and we realize we’ve been out doing errands for almost five hours.

I’d thought the consensus was that we were both fairly pooped after our long day out, but as soon as we pull in the driveway – before the car has even come to a stop – Elihu is out and running after his beloved chickens. As I unload the car and begin to think about making dinner, Elihu is at the small pond searching for frogs. (His current goal is remove all the frogs from our tiny, plastic-lined pond and move them to the larger, mud-banked pond where they can properly hibernate for the winter.) In a while I have supper ready, and although it takes three rounds of bell ringing to get him in, he’s content to eat a cold supper. Once again his head is full of flying ideas – how wings work, how amazing they are to watch, how he wishes he could know what his birds are thinking… I am almost fed up with all the bird talk, but hey, I suppose I’m lucky to have a kid who’d rather spend his free time with an actual bird than an electronic game about birds – let alone angry ones. !

We’ll catch up on that book report – I promise us both. Granted, we hadn’t accomplished what we’d hoped for school-work wise, but it wasn’t a day wasted. Elihu may yet one day need to use spell check to make sure he’s spelled ‘exquisite’ correctly, but no doubt he’ll always remember the day we flattened a penny on the railroad tracks, and maybe that alone was worth taking a free day.