Sunday, August 30, 2009

Walking Man

My little guy is starting to take an interest in standing and walking. 


He’s able to pull himself up to his knees now. This allows him to reach the surface of the couch and he’ll stay like that for some time, placing and replacing his toys. This is fairly businesslike activity for him. He looks a little like a workman at his bench, moving items back and forth to suit his project. When he’s like this he seems to know what he wants to do and is content to do it alone. I give him space and just glance at him occasionally so as not to disturb his concentration. 


But when he wants to stand it’s different. He wants to share.


He’ll pull one foot up flat and make some of the preparatory motions for pushing upright with his bent knee and then he’ll look around for one of us with a bright excited smile and mischievous eyes. He looks like a boy on the edge of great fun who has turned to share his anticipation with someone else. He wants company. 


“Check this out!” I can hear him say, though of course, there are no words like that. Just a giggle and a laugh as he stands there like this. 


“Daddy’s helping him to walk,” my daughter will say excitedly when I take both of his hands and help him to his feet. His eyes go wide and he takes little hesitating steps at my prodding. 


We’re usually able to get half way across the living room like this (my daughter clapping and hooting out cheers for the twelve feet or so) before he either sits down on his own or I prop him up with his hands flat on the surface of the couch. It’s fun and exciting to see him move like this. 


A lot of people compare children’s first steps to those of a drunks. I know there’s a comparison to be made there. He does seem to stumble along and reel when he loses his balance. But a drunk is kind of a reduced person, a caricature of an adult, and they seem pitiable or laughable in this state. 


With kids, and especially a kid with his challenges, it’s like watching a man approach the edge of a cliff with newly sprouted wings. The wobbly start that my son has got seems more to me like the first uncontrolled moments in the air of a fledgling bird - a dramatic and evolutionary change. It’s a liberation from an age of limitation. 


“Ahhh wooo!” my son intones as his little bottom hits the floor for his victory lap and he looks up at me with a smile. The sound is his imitation of a wolf - I don’t recall where he picked this up. It’s kind of like a battle cry for him. It's also become a nick name for him (he has many); we call him the Wolf Boy


“Woo hoo! Great job little Wolf Boy!” I say excitedly and watch his face grow brighter and more excited. He moves off to start banging or spinning a toy and I sit down to admire him. 


"Ahhh woo!" my daughter shouts out, "Yeah for the Wolf Boy!"


It won’t be long now. I can see it in the expression on his face. He sees his freedom ahead of him. He feels a little out of control right now but also elated by the sense of cutting loose from the earth. 


I don’t know if it will take a week or a year for him to finally make those independent steps alone, but I’m sure he’s on his way now. He’s destined for good things. I believe it. 

Saturday, August 29, 2009

Memories of Saturday Lists

"Daddy, why are you fixing the sink?" my daughter asked me this morning on the way to Home Depot. 


Our faucet went out on us this week. This morning had been my first opportunity to replace it. I don’t always have the time (or the skill) for these tasks, but as I wasn’t able to reach the plumbers before the weekend, I decided to give it a try. I made a list of all that we needed for the job and had both kids in the car before my wife got up this morning. 


"Because the sink is broken Sweetie," I said, thinking this would explain the situation. This was an incorrect assumption. 


"Why?" she asked, and repeated the same question unhurriedly to each new answer I supplied. 


"Because we need water ... because I don't want to be thirsty ... so we can boil water to make mac and cheese for lunch ... so I can fill a pond for the fish to swim in ... because I want a water bed tonight ... etc ..." she didn't tire of asking and I did my best to supply interesting (if sometimes implausible) answers. 


This can be fun. When she gets into a Why mood, I use her questions as an opportunity to test my imagination; to see how many things I can list and keep it entertaining. It's a very old game for me - I started in college. But until my children came, I never had an audience patient enough to play. 


"Ugh! Enough!," my wife (then my fiance) would say when I was in a silly mood and like Elizabeth Barrett Browning, in her Sonnets from the Portuguese, listed out all the ways I loved her. 


"I love you enough to stop," I would say with a grin. She groaned. It's amazing she agreed to marry me. 


But my daughter is still young enough to be entertained by my nonsense. Or so I think. Maybe she's just delighted to keep asking Why. It doesn’t matter I suppose - it’s just fun. 


I was looking forward to this morning with the kids. I look forward to any morning where I can do something useful with them that involves an errand out of the house: Going to storage; going to their Grandmother’s house; returning books to the library ... Sorry ... I'm doing it again.


I also like it because it reminds me of time I spent with my father as a boy. 


Dad was working pretty hard when I was my daughter's age. He traveled for his job and worked late when he was in town. He rarely had time to play. But he did lots of home repair and lots of errands on the weekends. And I was his regular companion for these sessions. 


Sometimes my younger sisters would come with us, but mostly it was just the two of us. This may have been because of an arrangement that my parents had for keeping us kids grouped into manageable numbers. It may just have happened naturally. I suppose I never asked. 


I liked these working mornings with Dad because he was almost always in a good mood - an experience rarely seen at the end of his long days during the week. He was also uncharacteristically talkative and I learned a lot about him that might otherwise have remained unknown to me. 


I also learned to get up early and to be ready - Dad didn’t like delays. He would have an early breakfast and coffee with my mother before starting. They’d talk and eat while he wrote out his plans on a sheet of blue lined paper in black ink. 


His writing looked to me like little scratches and bubbles. Sometimes - when my mother was occupied - he’d look at the ceiling and mutter and look down and scratch, scribble and circling certain lines without flourish. An unfamiliar observer might have thought he was a little crazed as he did this. I think it of it now as a kind of a code that he used; something more direct than language; something that more concretely transcribed his ideas. It also acted like a kind of enchantment, something a sorcerer or druid would use to put a good spell on an endeavor. It was his ritual. 


He’d finish up his thinking, fold the list and put it in his pocket. Sometimes, he’d tape it to the dashboard of the car with Scotch Tape. It would ride around with us all morning (or all day). I’d look at it as we made our way to the garden shop or the lumber yard or the hardware store and wonder what it was all about. 


"Can we go home now?" my daughter said to me as we were on route from the first Home Depot to the second (the faucet model was out of stock in the first). My son was making restless noises as well.  


I remember being like that too; a chatterbox kid with a lot of questions and little endurance. My Dad probably had his hands full with me. 


I stopped for Munchkins for the kids and coffee for me and we completed our shopping trip. When we got home, I set my daughter and son up with their toys and I set to work on the kitchen sink; each of us had our diversion. It worked out well. 


The kids were quiet (lucky), the old faucet came out with little trouble (unusually lucky), and I had all the tools and pieces I needed for the job (astounding). Within two hours the job was complete. 


“Daddy fixed the sink!” my daughter announced to my wife when she arrived. 


“Wow,” she said with convincing enthusiasm, “You did it. Thanks.”


I stood around the kitchen for a bit, enjoying the good feeling while the kids got their lunch and my wife tested out the new faucet. It was nice. I showered and ate and (God bless her) my wife let me take a short nap. I felt (in a small way) like a victorious Roman general, circling the streets of Rome in a chariot, a hero for the day. It was well. 


It’s felt like a tough week until now. I knew I needed to do something to pull me out of my rut. And when I’m at a loss, I look back to my Dad’s example for inspiration. Putting that list together, bringing the kids along for the ride and fixing something on my day off. It’s something he did many times. It put my mind back into a good place , helped to calm me down and put things in perspective. 


Things are not that bad. 


I’m looking at my list now as I write. It’s different from Dad’s. 


I prefer unruled 4x6 index cards and blue ink. I don’t make circles or bubbles. There are four even creases where I folded it to fit into my pocket. Sometimes, I’ll even keep an old list in my wallet for a week or so if it’s been a particularly good day. Like a touchstone, it seems to hold some native power for a while and helps me recall a plan that went well. 


It may even begin to explain why I like poetic lists so much too. 


It’s out of fashion now in literature - a tour de force list. The ancient poets used to invoke it with the phrase ubi sunt or where are. It was an invocation that opened up all of history to them. They could use it to trot out all the great warriors or artists or poets from ages past and make their lists both engrossing and entertaining. Homer, Virgil, the Beowulf Poet, Spencer, Milton and even Wordsworth all practiced these. When it was done well, it was the signature of a master.  


I’m sure my Dad did not have any of this in mind when he was making his own lists. His (and mine) are of a more practical nature. But there is a power in them when they’re done correctly whether useful or artistic. I return to them when I’m confused. And today a list helped fix something useful that was broken. 


See you tomorrow. 

Friday, August 28, 2009

A New Topic

This will just be a short introduction to a new topic. 

Twice this week we've been late on a medical bill without having intended to be. One was a hospital bill - there were six separate charges for this particular day - that went to the hospital's internal collections unit. I received a call at work and paid it on the spot. Another was a bill from the state - our portion of the early intervention - we need to overnight a check so as not to interrupt service for our son. 

We had the money set aside for both, but had no idea they were due. 

I was appalled. 

I've never been late on a bill in my life until my son's bills started coming through the door. It's not necessarily the cost - thought it is expensive - so much as that the bills are extremely confusing. They all look different. In some cases, they don't even look like a bill. And they come in packs, like wild dogs, for the same date of service (sometimes multiple copies of the same bill). 

I don't know what to do to get these under control. There's part of me that thinks that I need an accountant to help me. 

I plan to write periodically about the operational side of having a child with a disability; scheduling, billing, reimbursements, etc... I suspect I'm not the only one who struggles with understanding these bills. 

Right now I feel like I do in the spring when the sugar ants invade our kitchen - always happens. I just can't clean up fast enough; and I can't help feeling that there will be another swarm in the morning.  

Thursday, August 27, 2009

Mean Days

Some days I just feel mean and mad. I feel my pupils contract into dark little bead holes that shoot small petty glances at people's faces like ball bearings. 

When I'm feeling mean, I want everyone to know it. I mutter ugly somethings; I stalk by people with sideways glares; I give flat single syllable responses to well intended questions. Sometimes I even imagine myself starting small trash fires with my eyes. 

I'd started this way last night after a some bad news and my ill mood continued well into today. I went to bed angry and tried to avoid the kids this morning. I got up early to leave the house before anyone was up. But this was not meant to be.

"Daddy, I want some breakfast," I heard my daughter's voice from behind me as I was gathering my things this morning. 

"Arrrrgggghhhh!!!!" my internal Charlie Brown sounded a silent scream as if the infamous kite eating tree had gotten the best of him again. I let my shoulders drop in defeat and skulked off to the kitchen to prepare a bowl of cereal and a glass of water for the kid. 

She was well behaved and gave no trouble. It was a mercy. I got her little brother when he woke as well before rousing my wife. She takes the late shift as a rule, and I don't like to wake her until its necessary. 

It was another hour before I got out of the house. 

"It's not their fault," my wife said, trying to talk me off the edge that I was teetering on before I left. 

She was defending the the hematologist office that had performed tests on my son two weeks ago. They informed us yesterday that they had not been able to get definitive results on some of the crucial tests for my son's blood. They wanted another go to confirm things were normal; they wanted my wife to give blood as well. 

"Please don't get angry on the phone with them... it won't help," she'd pleaded, knowing that I'm perfectly capable of letting people know when I'm not happy. 

"They botched it," I said in response and stalked away and out into my day. It sounded to me like they'd messed something up and were trying to cover their tracks. 

It may not be a fair statement about the doctor's office - that they did not get a proper blood draw on my son or that they had run the tests incorrectly - but I wasn't feeling fair. I was angry. That initial visit had been very stressful for us and incredibly uncomfortable for my son. They were asking for an instant replay - a do over. I was beside myself.  

I felt all the more enraged, because our choices were limited to either returning as they had requested or pursuing the test with another office. Either way it was (and is) lousy for us all. I felt helpless. I still feel a little of that now, but it's passing. 

I did not call that office. I was busy (luckily) and the events of the day distracted me enough to keep my thoughts from running to the dark side. 

Somewhere over the course of the day I went from steaming mad to just a simmer. My thoughts of confronting the doctor on the phone or in person subsided and gave way to thoughts of finding another provider. 

"Just go somewhere else," a co-worker said to me over lunch, "if it makes you that angry, just don't go back." 

She's probably right. It makes sense. We're not powerless and we don't have to return to people we don't like. I know this. 

But even now I feel sudden flickers of anger like the occasional pop of sparks from an otherwise dying fire. I feel a little dangerous still. 

I'm sitting in my daughter's room now. Hoping that she'll drop off to sleep soon. I have to go down and tidy the house a bit and get ready for the morning. I'm writing to cool my nerves a little. 

I don't like days like today but I suppose they're inevitable. Part of me wishes I could handle them with more grace. I'd especially like not to spill any of this over onto my family. I feel like a tea pot that's been left on the fire too long and is now hissing and spitting hot steam and boiling water; unsafe for anyone to handle without gloves. 

But I guess also that the children will have days like this themselves. Maybe it's better that they see me glowering at the world now and again - understand that it's normal. I don't know. Hindsight is not a hallmark of an angry day. 

I hope when I wake tomorrow this will all seem like a bad dream and my heart will be ready to feel good feelings again. I hope I can find a reason - in time - not to be angry with the doctor. I know we're likely to need them. I hope... I suppose that's a good sign in itself.  

See you tomorrow. 




Tuesday, August 25, 2009

Singing

When I was a boy, I remember so many books and television programs that had parents singing to the children to help them to rest. This seemed like such a miracle to me. I loved the idea or the sound of a voice - it was usually a woman's voice - calming a baby. 

I'm reminded of this feeling each time we pop the Lady and the Tramp video into the DVD player for my daughter. There's a scene in the film where Peggy Lee sings goodnight to the baby boy in the film. 

My daughter gets excited by this scene and asks again and again, "What's the Mommy doing? Why is she singing to the little boy? Did Mommy sing to me when I was a baby?" It's a wonderful image and I love sharing it with my daughter. I could watch it with her again and again.  

But, my own singing - poor as it is - has never had much effect on our children. Now, I don't think I've ever made them cry at the sound of me, but I don't recall that they had ever stopped crying at the sound of my voice either. I've been inclined to be a little disappointed at this. 

They're both city kids and there are lots of noises that come through our walls. I suspect, that as infants, they had put my singing voice in the same category as the police and ambulance sirens; or the neighbor's dog; or the voices that come in from the street when the bars have closed. Just another of those crazy city sounds; nothing to remark over. 

But last night that changed. 

My little guy, who had been fussing in his crib, actually stopped crying when I sang a little tune that my father had taught us as children. 


He looked up at me for a moment with both eyes open with wonder like flashlights. He stopped his crying and started to play with the mobile in his crib. His quiet play turned quieter as I sat on the couch and continued the little song over and over. Eventually I could hear the regular sound of his sleeping; a miracle. 

I felt, at that moment, like I did as a young little league player in right field, when I caught my first fly ball; both then and now, I had expected failure and been delightedly surprised with success. I kept looking over at him - as I wanted to do with that old baseball - to make sure I wasn't dreaming.  

All day long I thought about that moment. I wondered if it was a fluke. I felt like a man whose seen a cougar in his back yard and has been reluctant to believe his own memory. 

But tonight I had the same luck. The boy went down and asleep like a charm. It's one of the best feelings I've had as a dad. 

That feeling wasn't lessened when I learned my experience wasn't unique later as I met my wife in the kitchen. 

"Oh sure," my wife said when I told her, "He does that for me all the time. It's nice, isn't it."

I just smiled and agreed. I'm glad we can share this. 

I'm sure at this age he won't remember his Mom or Dad singing to him, but I hope there's some feeling that will linger. I know I won't always be able to bring him comfort, but I hope that some idea of it will stay; some dim memory of a silly song - a drunkards lullaby really - that he heard once upon a time. 

Neither of us may have that silvery voice that Peggy Lee graced the screen with, but there's a preciousness to the voice that loves you that feels like gold. 

For me that voice is faded now. It's the voice of my aunt when she was young - really just a teenager - holding me in her lap in a battered old red leather recliner in the den of my grandmother's house. I hear that voice when I'm sad or lonely and I can still take some comfort from it. 

I don't remember all that she said, or even if she sang to me at all, but there was love in that voice; and when a voice has love, you can always recall it. 

Monday, August 24, 2009

Dressing my Son

Getting my children dressed is never easy. Neither one of them likes to change from whatever cloths (or naked state) they happen to be in. And sometimes it takes a little extra motivation to get through the process. 

When my daughter is protesting with an imitation of a fainting spell, or my son is peddle kicking and arching his back, I find it helpful to keep an image in my head to help inspire me: I'm a squire equipping a knight; or I'm in a pit crew team trying to get my racer back onto the track; anything but the way I feel, a desperate parent trying to dress a child. 

But the process of getting my son's left arm into a sleeve is a step beyond the ordinary dressing challenges. This left is the arm that is affected by cerebral palsy. It's not an easy arm to work with and finding both a process and an image that helps me has not been easy. 

The process, after much trial and error, goes a little like this: 
  1. Find the loosest shirt or onesy available. 
  2. Pull it over his head. 
  3. Insert the right arm. 
  4. Improvise.  
The images vary depending on the level of difficulty that I'm facing. 

In ordinary situations, I try to imagine that I'm a surfer floating on a board, waiting for the wave that the ocean will produce. This is helpful as sometimes there will be an involuntary contraction or extension of his arm that I can use to hook in the sleeve opening. Or sometimes, I can coax a movement by massaging his shoulder and eventually thread my own hand into the sleeve to meet his half way and gently tug his hand out. It helps me to use the energy and motion that may already be there first, rather than fight against it. 

When he can't or won't move his arm, I'll have to reverse the process (and the image). I'll stretch the garment as much as possible to avoid pressure on his joints or fingers and try to catch his arm at an angle that I can slip it over his fingers gently. This is a little like bringing the garage to the car, but it seems safer than manhandling him.  

When it comes down to it, and I have to guide him, I've had to improvise an image from a separate medium; I've borrowed a teaching from the famous golf instructor, Harvey Penick. Mr. Penick illustrated many of his lessons with images. In the chapter on the golf grip, he relays an image that the professional golfer, Sam Snead used to teach a good grip: "hold the club as if there is a live bird in (your) hands, with just enough pressure that the bird can't fly away but not so tightly that the bird can't breathe." 

It's advice intended to keep novice golfers from tightening up on the club so much they loose all feel of a good swing; it's advice that I've improvised to help me to handle my son gently and keep him safe. I hope that both men would approve. 

Sometimes though, even this last image fails me, and I'll just undress him down to his diaper and let him play. 

"Naked, naked, boy!" my daughter will sing to the tune of The Village People's Macho Man when her brother is in this state; scooting around the living room, hooting it up, bare and (for the moment) liberated and happy.  

It's frustrating when I've exhausted all options, but it's temporary. Eventually we get him dressed. 

But I wonder what it will be like trying to teach him to dress himself someday; and who I'll be able to turn to for a way to do it. How to close a button, tie a shoe (velcro or not, he'll need to know eventually), put on a tie. There may be enough progress in his arm by then to make these tasks easier, but it's hard to know. I wonder where I'll find inspiration to inspire him.

But I suppose that's the answer in itself. At some point, no matter how frustrating it might be, I'll need to let my son figure some of this out himself. And I know from the responses I've received on this blog and also from my first post on Motherlode that he'll be in good company The responses from both adults with cerebral palsy and parents of children with cerebral palsy and other challenges have both humbled me with their generosity and given me hope with the stories of their success. We'll figure out a way. 

I think of those responses and know that there will be another Harvey Penick out there to provide guidance when the time comes; another unexpected teacher. And maybe then it won't need to be me or my wife who finds the teacher, maybe it will be my son who finds them. 

Sunday, August 23, 2009

The First Word

"No." 

The word came out clipped and short and as bright as a major chord on a well tuned guitar. 

It was my son's first repeatable word beyond Da and Ma and we all laughed when he said it twice and three times and beyond. It was a joy. He smiled and laughed at our delighted reaction. 

My son's speech has been delayed. It's been suggested to us that this is part of the normal course of affairs for kids with Cerebral Palsy; though no one has given us a concrete understanding of why this is the case. We had been (and are still worried) that there may be more of an issue with his speech than just a delay. But today gave us more hope. 

I remember waiting for my daughter's first word, wondering when she'd begin to tell us more about herself. I was excited as she started to grasp the language and repeat lines from familiar stories we'd read her. It was fun and she was a quick study. 

With my son it's different. Because the brain is so complex, and the impact of the stroke that affected him is so hard to measure, we're just not sure where his development challenges will come from. We watch each of his behavior changes closely. We discuss them exhaustively and try to determine what each might mean. Today, we did not need to discuss, we knew this was good. 

It will likely be a long road still. The New Jersey's Early Intervention program has assigned him a speech therapist who will be working with us in the near future. We may, depending on insurance, try to do more. We also practice each technique we were given at his formal speech evaluation for Early Intervention. There is a lot to do. 

But for today we can at least be sure that some of the work has paid off. Our son has made his first step into the language. Our boy has the word.  

Friday, August 21, 2009

Storm At Sea

It was very humid last night. The fans were running on both floors and it was just beginning to cool down close to midnight when the house finally started to settle down. It was the last day of our vacation and we were all restless and moody.  There was a feeling in the uncomfortable air that was hard to dissipate. 


"I block you Daddy," my daughter had said emphatically when I went to put her bicycle away earlier. She put up a threatening hand to emphasize her point and added, "I block you for ever!"


She went so far as to grab onto the bicycle with both hands and threatened to what would have amounted to a sit in. We eventually distracted her with an ice pop (her favorite) and I put the bike away in stealth. 


My son resisted both food and sleep and clung to my wife for hours. He cried hysterically each time she tried to leave him alone in his pack and play. This is unusual these days and we gave him as much comfort as we could. Eventually he tired himself out with his excessive fussing and fell asleep with fists still clenched. 


I had a similar restlessness and after the children were sleeping, I alternated between cleaning and packing to try and work it out. When I get like this, I feel like I’m trying to work a tight knot free from a shoelace or rope; except the knot is somewhere between my thoughts and my hands. 


“You okay?” my wife asked as I was passing by with a second load of laundry. 


She had looked in on me periodically to make sure I've wasn’t pulling up the floor boards or stripping the walls.  


“When the world stops making sense, clean your nest,” I said with a shrug of my shoulders, not knowing exactly how to explain my mood. 


It’s a line I stole from a Bruce Dern Film called On the Edge that I like. In the film, Dern plays a runner coming home out of exile to resume racing and confront his flawed past. In a scene that follows a confrontation between Dern and his inflexible (and chronically disorganized) father the two find common ground after years of estrangement; the film underscores his father's acceptance of his son as Dern arrives to his father's suddenly clean and organized house. 


Dern, looking at the house in amazed disbelief says "I've never seen the place so clean."


His father, by way of explanation, says in response, "Your mother taught me that. When the world stops making sense, clean your nest." 


I liked that reasoning when I first saw the film as a rented VCR tape in college. I still do. When I’m blue or confused, I feel a little better when the house is neat.  I try to imagine that the physical rooms around me are just an outward projection of the rooms in my mind. If I clear the clutter, sweep, mop and launder cloths, I’ll think more clearly too. 


There’s some truth to this idea, but the cleaning can’t do everything. And when the floor sparkles and the laundry bin is empty, and I still feel confused, I know I’ve taken it as far as I can. 


“Feel better?” my wife asked when I’d finished and showered. 


This time I just shrugged my shoulders wearily. I went and sat by her on the couch quietly.


“Get some rest,” she urged and nudged me off to bed.  


I was tired enough to listen and went to rest without further fuss. 


“If a man have not order within him, He can not spread order about him,” I heard the line from Ezra Pound come back to me as I lay awake before sleep. 


I have mixed feelings about Pound as a person, but I’ve always liked that line he quotes from Confucius in Canto XIII. For me it’s the reverse side of the “Clean your nest,” quote, but it’s not as easy to follow. It’s a much tougher to organize your thoughts when they’re a muddle. And last night I was much too tired to do more than puzzle about the Analect a little before drifting off to sleep.


It was just as well. Sometimes I don’t think there’s anything I can do but to distract and tire myself out; and even the most sage or effective prescriptions are useless except as a means to exhaustion. Sometimes I just need to let the thing pass.  


We’re home now. The inside of our little home in New Jersey is cluttered with a dozen or more of those half unpacked bags I spent so much time preparing last night. It’s a mess, but I feel much better about letting the mess be while I write. 


Maybe it’s as simple as getting home that’s made things easier. Maybe it’s the time that the long trip gave me to think. But I think there’s something larger at work too; something that moves silently like a great atmospheric mass of air. And no action (or inaction of mine) can affect it. So that all my energy at cleaning and thinking last night was only a distraction - like a dog barking at the noise of a storm. 


There’s no way to know for sure. Today I’m equally tired and much more at peace. The drive and the unpacking and managing of the kids have left me exhausted and I’ll rest soon. 


I hope when I wake in the morning the whole of it will have gone like the hurricane they say is stirring out in the Atlantic away east. And the sky will hold that clear sparking blue that only comes after it’s been cleansed by such a powerful event. I wont understand it, but I’ll be glad. 

Wednesday, August 19, 2009

Spiders

"Spiders like corners," I said to my daughter this morning. 


She was standing near the top of the stairs and hesitating to come down; she'd caught sight of a small milk spider clinging to the slanted ceiling above the stair case and was feeling unsure of herself. She was also, I think, a little rattled from hearing her brother cry for an extended period in the early morning. He had woken suddenly and it took some time to calm him down. The spider was just icing on the cake. 


"Tell him to shoo Daddy," she said to me, "Make him go away."


I don't like killing spiders if I can help it. They tend to mind their own business for the most part and stick to ceilings and corners. I think they're useful and good to have in a house - the domestic kind that is - and I respect the role they play in nature.  I'm also superstitious I guess, and when I have to, I'll just move one out of the house with a tissue rather than killing it.


I also don't like my daughter to be afraid of things that won't bother her if she's respectful. 


"The spider's just hanging out," I said, "He just likes that corner and he won't bother you if you leave him be."


She considered this logic with a dubious tilt of her head. 


"Um," I said, "I'll just ask him to stay put, OK?"


Her expression changed from nervousness to smiles in a moment. She nodded vigorously and waited for my performance. 


"Mr. Spider Sir," I began, thinking it best to sound polite, "Please just stay where you are while my little girl walks down the stairs. She promises not to bother you."


I held a raised finger up at the little guy to emphasize my seriousness and gestured for my daugther to make her move. I know this is a bit of a cheat, but I’ve become less scrupulous and more tactical about the measures I’ll use in my day to day survival as a father. As deceptions go this seemed to me not much worse than the Tooth Fairy.


"Stay there Mr. Spider," she said as she descended the stairs quickly, "Listen to Daddy!"


She breathed a sigh of relief as she made her way to the kitchen for breakfast and smiled. 


"Spiders like corners," she repeated without looking at me as she ate her toast and butter. 


I was glad to have helped her, even if it was partly by silly sleight of hand. I was also glad the spider had decided - for whatever reason - to stay put. It’s great to have the appearance of super powers, but the appearance part can be very tricky to hold on to. 


I thought at the time that it must be confusing for a kid to see their parents as both invincible and also as sometimes helpless. Sometimes the transformation can be nearly instant; there are so many occasions where I fall flat on my face. This is especially apparent with my son’s needs. 


When he’s crying and can’t be consoled, or when he begins a new treatment that requires him to be uncomfortable, I see my daughter trying to understand why we (the parents, a.k.a. superman and super woman) can’t solve this for him; why we get frustrated and angry; why sometimes, we just put him down in his crib and let him cry it out while we calm down. 


“Why is he crying,” she’ll ask plaintively when this happens, “Is he hungry?”


I wish I had a spider answer for these questions. The explanations I have to give seem much less plausible or understandable: “He’s just uncomfortable... he’s not used to the brace ... he’s a little satta fratta (our non-swear word for pee’d off).”


The explanations don’t seem to explain and they leave her worried and trying to resolve the riddle with her own wits. 


I looked down at her over my coffee and felt a tug at my heart with this train of thinking. I know kids have a good resilience to stress, but I don’t like the thought of her confused and worried. 


She must have felt me looking at her because she suddenly looked up with a question. 


“Daddy,” my daughter said, “I need to ask you something?”


“Ok,” I said, “What?”


“Do you love spiders?” she asked without a trace of impishness about her. 


“Uh ... um...” I was at a loss


“We’ll I don’t hate them, but I don’t make them breakfast either,” I said a little evasively. 


“Oh,” she said. 


“Besides,” I said, “I don’t like corners. I’ll probably never get to know a spider well enough to love one.”


She laughed. 


“That’s just silly Daddy,” she smiled and returned to eating. 


“I know, I’m just a silly Daddy,” I said thinking that her observation was more than true. 


Nonsense is just the only way to respond to some things. It provides the satisfaction of an answer when there is no answer to give. And though it can’t always be used, it rarely fails me when it’s allowed.


Nonsense also has some real staying power. My daughter seems to remember my silly answers and statements far longer than what I say honestly on instructively. She’ll often trot out these phrases at unexpected times and places; and so it proved today. 


“Mommy, do you love spiders?” my daughter said to my wife with a giggle later in the day; she giggled louder still when my wife made a face at the proposal.


“Would you love a spider in a corner?” she said and fell on the floor laughing at her own improvised joke. 


My wife gave me a quick glance and I explained briefly the history. 


“You guys are just super silly,” my wife said laughing at us. 


“Yes. Yes, we are,“ I thought quietly. Silly nonsense is our best friend these days. 

Monday, August 17, 2009

Rose O Sharon

In the side yard of the house where we are staying are several Rose O Sharon bushes. They are in flower now, and against the otherwise unkept landscape they look like well dressed cousins in for a brief stay. Three of them stand in a row and hold out their purple flowers (of so my flawed sense for color tells me) and bring some elegance to these otherwise wilting hot days in August.


It's taken me almost a week to notice them, and I finally feel like I've broken out of a rut. I'm not sure if the rut came from work or from the demands of my son's health or from some other source, but I know when I start to notice a Rose O Sharon and don't feel compelled to turn away to some necessary task, that summer has stopped lingering on the doorstep and has finally come in to stay. 


I feel especially attached to Rose O Sharon from the days when I worked through college and graduate school as a landscaper. My first graduate degree was in English Literature - I've always been a bit of a dreamer - and when I read Steinbeck's Grapes of Wrath again after many years, I was struck by the tragic character that took her name from their flowers.  There was no internet for me at the time, so I actually had to use one of my trips to the library as a chance to look up a picture of the flower and the bush. 


Though I don’t remember the original text, the website www.backyardgardener.com has a good description,  “Hibiscus syriacus or Minerva Rose O Sharon ... is loved primarily for its large, to 5 inches wide, funnel-shaped blooms that resemble those of tropical hibiscus, yet not as flashy...  I like this overview because is both concise and evocative and manages to sneak in the word love into an otherwise business like overview; love and the even more hidden (and invisible) word unassuming (as opposed to flashy tropical petals). It captures some of the secret grace I feel when I’m around the plant.  


Not that I gave the matter this much thought at the time. I just felt curious and attracted - not all that unusual for a young man - and once I knew more about it, I started looking for Rose O Sharon in every yard I worked in and would stop my mowing or trimming or pruning and admire the them quietly. 


I began to find that wherever I discovered plant like this, there was a well loved garden with many other hardy local bushes: Forsythia, Roses, Rhododendrons, Double File Viburnum, Burning Bushes and others beyond my simple knowledge. All of them were common to my home in the Northeast, but none were quite so beautiful to me as the Rose O Sharon. It became a hallmark, almost a secret sign of a place I could feel at home. 


I suppose it's partly my own doing that I don't see them so much these days. I live near and work in the city, where most flowers are confined to pots and window boxes. Sometimes, I'll wander down to the flower district on 27th street in Manhattan or for a quick trip into Central Park, where the colors run nearly wild and drive away the glum grey colors of city life. Those places (and many others like them) are part of what's make New York special to me, but it's not the same. As much as I love those Oasis and draw some peace from them, they are only respite from city life, not a home. 


But for this week at least, I'm blessed to be on vacation (and feeling at home) when they are in bloom. I only need to open the window near the breakfast table in the morning or at lunch to be near them. It's a rare pleasure that I know I'll have to leave shortly.


I’ll think of them when I climb into my car or descend into the subway next week. I’ll try to recall some of the easy summer pleasure they convey. I don’t know how long I’ll be able to hold onto the relaxed feeling I have now; necessity is a hard master. I suppose I could take a picture, or go to a website occasionally to remind myself of them, but somehow it’s not as fulfilling as a simple memory. I’ll do my best and think of them and know that there are hidden places where they linger even as I move away.  

Sunday, August 16, 2009

Light and Sweet

The kids woke up at 4:30 a.m. this morning; my son started to cry and my daughter came to our room to ensure that we were aware of the situation. 

"Dad. Dad. Dad. Dad. Dad," she chanted. 

I came out of my dreams roughly and was trying to deny the reality of her voice. Our son has been sleeping through the night for a couple of months now and we're starting to get soft again. I never truly appreciated the soldier Martin Sheen played in the film Apocalypse Now and his desire to get back into the jungle until now; the jungle makes you suffer, but it keeps you strong. 

"Um, Dad. Um, Dad. Um, Dad," my daughter repeated without any urgency. She was not going away. 

I tapped my wife on the shoulder. Without opening her eyes she rolled over to get my daughter's hand and pull her into the bed, while I rolled out to attend to our boy. 

This arrangement of dividing the kids is still a working routine for us and like all good routines it begins without thought. As I moved away from my room, I could hear my daughter's little piping voice alternate with my wife's soothing her to rest. I have to admire my wife in this - she rarely ever fails to get my daughter back to sleep. 

My efforts with my son are less predictable. 

Nonetheless, I tried to stick to my routine and after so many months of practice, my muscles just took me down to the kitchen for fresh milk and back up to my son's room automatically. This morning, as I sometimes do on other mornings, I said a little prayer along the way: 

"Please God, let him go back to sleep. Please God, I'll give more money to charity, just let him go back to sleep," or something very much like that. 

But when I opened the door to his room and saw him sitting upright in his crib with clear and wakeful eyes I knew that God was busy elsewhere and was leaving this one up to me. 

My situation was made slightly more difficult in that we are on vacation this week and had one of my cousins and his fiance staying with us. So my usual back up plan - to let my son throw his toys around in the most remote part of the house - was not possible without waking our guests (who were in a spare room downstairs). 

I felt a little like a baseball player whose lost his favorite glove and has his place in the lineup changed on the same night. I was completely out of my grove. 

As the reality hit me and I came into full consciousness I felt some anger and frustration, but the urgency of my son's tears forced me to put that anger aside; If there was anything worse than having him awake, it was having the whole house awake with us. I scooped him up as fast as I could, threw my wallet and cellphone into his baby bag and hustled out to the car. 

He was still crying when I turned the engine over and pulled out into the dark. 

The clock on the radio showed that it was nearly 5 a.m. I thought I'd drive around until someplace opened up for coffee. 

To sooth us both, I steered the car down to the road that runs along a long stretch of beach. Usually this road is choked with cars jockeying for parking, but at this hour it was desolate. The first faint pinks of the dawn stretched out over the horizon of the ocean and I thought of Homer's famous line - "Dawn, with her rosy fingers."

Homer, I had been taught, used beautiful phrases like this as a way to prepare his audience for the next scene. It was a way of breaking from the action with a soft distraction. And this morning, that distraction seemed to work for both the boy and me. My haste and anger dissipated slowly and my son stopped crying. 

We drove around like this for maybe an hour. I resisted to the desire to put on the radio and just let the light grow up around us quietly. By 6 a.m. we were both peaceful and calm. I was more awake and my son was growing sleepy again. 

I pulled into a donut shop whose lights were on and waited for the attendant to flip the "Closed" sign over to "Open."

"It's not so bad," I thought as I picked up my sleepy boy and went in to order a coffee with a jelly donut - I don't diet when I'm pulled out of bed this early.

I was the first customer of the day and man tending the store smiled at me knowingly as I held my son by the counter. 

"Probably thinks this is cute," I thought wearily. There's a kind of almost military camaraderie between parents who have survived the no-sleep thing; almost like soldiers who have shared a battle together. I can usually pick out a parent at a time like this just by the look on their face. 

I met his eyes and recognized the kinship, but no commentary came. He looked once or twice like he would say something, but something was holding him back.

"Coffee, light and sweet and a jelly donut," he said gently handing me the bag. 

I had turned to the back counter to get some napkins when he called gently over my shoulder.

"Uh, Mister," he said, "Wasn't sure if I should, but I got to tell you something."

I looked up questioningly. The expression on his face was both amused and knowing and shy. 

"I think you're still wearing your pajamas," he said gently with a smile. 

"I'm a Dad too," he added as I turned red and smiled with embarrassment, "Hope the day gets better." 


Friday, August 14, 2009

The Labyrinth

I’ll just introduce this topic, because it’s a tough one to write about. Sometimes I do that with difficult material; just crack the door open a little to see how dark the passage behind is and if anything really scary comes out. 


There are a gang of bad feelings that pick on me when I’m down. They remind me of the bullies I’ve run into in my life - waiting until your alone and down and easy prey and then move in for their sport and amusement. Of that group, anger is probably the one that is least sadistic and the one that’s easiest to open the door to. Sometimes it even feels like a friend; though there’s no happiness in that friendship. 


I’m frequently most angry about my son’s cerebral palsy when the statements and bills and the phone calls come. I  think this is because it’s a lot safer to be mad at money collectors - they don’t evoke much sympathy. 


“Am I late on my payment?” I always remember to ask the various medical billing offices when they call the house. 


“No Sir. You’re not late. This is a courtesy call - just to help you remember that there is a bill outstanding,” is what I’ve heard from several medical establishments - it’s part of a script they’re asked to read I’m sure. 


“So, basically, this is a form of soft harassment,” I’ll say in response. There’s a part of me that knows there’s a person who just needs a job at the other end of the line; but that part of me is easily overridden. Fair or not, I don’t like the job they are doing. 


“No. We don’t harass people Sir. This is a courtesy.”


“Oh,” I’ll say, “So If I ask you to put me on your don’t call list, I can forgo the ‘Courtesy’.


”No Sir.“ 


”So this is harassment?“


”No Sir. I’ve said...” they’ll try to resume the script. 


I never allow myself to get angry at the person themselves; but I’ll express utter outrage at the practice or the bill. I guess there’s a part of me that hopes that the calling staff will pass the word around that I’m a tough nut and will leave me alone. There are some calls I just don’t get anymore so I expect this may be true. 


But behind all this specific outrage at the billing snakes (as I call them), is the more profound root of my anger - my son is not being given a fair shake. And even behind that is my more selfish anger - I’m not getting a fair shake. 


These are the same feelings I remember having when I wasn’t selected for a sports team; or when I received a grade that I thought was unfair; or when I had to accept a correction at work that I did not think was earned - poor me. 


These feelings, of course, as real as they feel, are not helpful. They don’t help me. They don’t help my son. And they imply a singularity to our situation that is not at all real; there are many, many people who have equal and greater disadvantages. And perhaps, worst of all, these feelings leave me prone to a more dangerous emotion - helplessness. 


When it exhibits its darker tendencies, I think of anger as a kind of emotional gateway drug - it opens the door to more dangerous feelings if you overly indulge it. 


And I would be lying if I said that I know the best way to manage my anger. I know that sometimes anger can be a great release and can free me up inside so that I don’t dwell on whatever is fueling it. But it’s a very dangerous feeling to manage and more often than not I feel like a caped matador in the ring, dancing with a deadly beast that could easily overrun or destroy me. 


I don’t expect to come to any conclusions about these feelings in this essay; it’s hard to have perspective on an adversary that you wrestle with frequently. I just want to open the door, just a little, to those passages that don’t get much light. And to hint at the vast labyrinth that lays beyond. I’m not sure I’ll have the courage find or to cast a light on all the places that lay there, but I’ll at least start with the less dangerous corners of that neighborhood.

Taking my Children to the Water

I know it’s going to be a good beach day when the house is a little too hot for comfort. I know there’s probably a sound meteorological explanation for this experience of mine, but I feel less scientific about it. To me, it’s like guessing whether a restaurant will be good by the flow of people entering and exiting; it’s not always a perfect indicator, but I feel more sure about the day when it starts like this.  


Tuesday was one of those days. We were all bickering and on each other’s nerves from the moment that breakfast was cleared. We were uncomfortable and needed to get out fast. My wife and I packed some water and snacks in the cooler, loaded up the car with all the gear (that we could find) and after a false start - we forgot the sun screen - headed down to the beach. 


Even just the change from the house to the car brought some relief and there was a visible change in our children. They went from cranky to excited. My daughter ran a constant narrative for us from the back seat, announcing all the things she expected to find at the beach; sea shells, squirrels, space ships and sail boats were the most often mentioned. My son, who is really too young to do much but process raw feelings, was nonetheless happy and excited also. His eyes were wide and alive with interest. I stole glimpses at them from the rear view mirror as we drove and looked for a spot to park. 


I know both my wife and i were feeling better too. We stopped arguing and started making observations about the weather and the kids. We began to smile and be silly. 


For me it’s the thought of the ocean itself that brings my spirits up. I love the water and always feel refreshed after a swim. I’ve wanted very much to share this love of the water with my kids, but the process did not go as smoothly as I had planned. 


I tried unsuccessfully to carry my son into the water twice. Each time I waded in, he started to cry and turned back towards me and clutched at my shoulder with his little hands. He was much more pleased with the bucket of sea water I brought up for him afterwards. He slapped at it delightedly and laughed when it splashed onto him. It’s probably all that he’s ready for now, though I had hoped that he might take a liking to the ocean at first contact.  


My daughter, who has just turned four, alternated between excitement and nervousness. She took my hand and came to the edge, but hesitated to go much further without my carrying her out.


It wasn’t until my wife had spent some time with her and she had made friends with a small boy who was already swimming, that she grew bolder and waded deeper in. 


I find it both frustrating and surprising at how the kids find their own way to things. I want so much to share what I know with them more directly, but find more often that they make strides when I step back a little. 


“I’m going to swim like that boy,” my daughter declared after spending some time with her new friend. She was standing face to face with me at eye level (I was sitting) with her arms akimbo (a lot like her Mom) and looking not at me, but beyond me. 


i know my daughter well enough now to know that when she takes this posture, she is not making an idle statement. Now that the thought is in her mind, she’ll pursue it. It may take her a while, but she won’t forget. it’s an impressive sense of determination in the face of something that obviously frightens her. It makes me consider what that big open water means to her and to my younger son - and it forces me back to when I was young and how I felt when I was first up against the great water. 


And as I do this, going over in my mind the early memories of beach days with a large extended family on Cape Cod, I realize that I’m being led to the memory of that water by my kids. That as much as I wanted to share what I know with my son and daughter, they’re giving me back a little of their own fresh experience. 


It’s humbling to realize that there is a kind of permanent distance between my understanding of the world and what my children perceive. And the direct experiences of my past provides only a rough translation of what they see today - times change. 


But the experience of a cool and calm ocean on a brilliant summer day is large and powerful enough to make that tenuous connection come alive. To me, it’s like hearing a very faint radio frequency from a location far distant and in a language you only know as second to your own. Sometimes a phrase or impression comes through clearly and the magic of something otherwise unknowable comes to you nearly as if the voice were in the room with you. 


We’ll go back to the beach many times on this trip - as often as we can. I expect each trip to bring something new and unexpected. 


My daughter spent the trip home not talking about spaceships and squirrels but about a boy, whose swimming she admires. 


I spent the time thinking about swimming to my father in the calm waters on the bay side of the cape. He used to step back as I swam to encourage me to swim farther than I thought I could - it was confusing and frustrating, but it made me forget my fear of the water and it helped me to learn to swim. It’s not what I expected to be thinking about, but it’s what the ocean had to offer. 

Wednesday, August 12, 2009

Friends

We’re on vacation this week on Cape Cod. I almost feel I need a long blank space in the page to let that thought sink in. It’s taken a couple of days, but we’re getting out of our normal city hustle and into a more relaxed vacation flow. It’s like coming off the highway after a very long trip - there’s still a tendency to let the speed drift up. 


We chose this week and this location for our vacation because we had the opportunity to overlap some of our time away with friends who were vacationing close by. 


We live in different cities now and it’s hard to see one another as much as we would like. Even here on vacation, we’re a few miles apart and don’t see each other every day. But there’s something about a close friendship that makes time and distance less relevant. And when you see each other after a pause it’s like taking up a well loved book that you’d just put down for a while. 


And that’s what it’s been like for us this week. We’ve been to see our friends and their two wonderful children twice now on this trip. Each time we meet and settle in - which takes about a minute - and let our kids run (or crawl) around the yard or the living room, it feels like home. It feels even more homelike than it did we we saw one another nearly every week; back when we had the leisure and our good friends close at hand. I feel, when we meet after long intervals now, like an expatriate on a short visit home; the language, the food, the manners of the place that you are from are as much inside you as they are in the place that made you - and you love it all the more for it’s (or your) absence. 


Tonight as I drove our friends home from our house - they took the bus to meet us - I knew that I was having one of those moments that you carry around in your pocket forever. When I had piled all the kids things into the back of our small wagon to make room for the extra passengers, I had looked regretfully at our cluttered floor - scattered toys, cloths and dry Cheerios (from my son). 


“They’re friends,” I thought with some comfort, “I hope they’ll understand I haven’t had the time to clean.”


We were underway for a few minutes when the the older of the their children asked if he was sitting where my one year old son normally does. 


“Yes,”  I said, thinking that it was an uncannily prescient thought for an 8 year old, “How did you know that?”


“Because it smells,” he said. 


There was a small pause while we all took in this honest observation and then all burst out laughing together. 


“I’ll roll down the window,” I said still laughing. 


We laughed and gabbled and were as silly as the children for the few miles that separated us from their vacation home. The warmth and delight that I felt for those minutes were rain in a cloud burst and I was soaking from it. 


I know I’ll bring the thought of that ride out of my pocket on the many comfortless nights to come. I’ll think of that night and our friends won’t seem so far away. They might just be a town or two over. I’ll think of them and recall some of that warmth and gratitude. 


For me, when someone takes up residence in your heart, distance and time cease to be meaningful. They are always with you. 

Friday, August 7, 2009

On

It's been one of those days we're I've just had to be on. Not on in the sense that a simple device like a toaster can be turned on, or even like a car whose ignition has been turned over. I mean on like a bright carnival or a busy town or city. I felt like something that comes to life slowly. Something that gains momentum.  Something that builds more and more divergent purpose and energy until, at last, when the thing is in full swing, it cannot comprehend all that it is or will do. 


It used to be that my workplace could make me feel like this. Some urgent business or technical problem would require me to fire up more than just my brain and I'd have to employ my full professional faculties and drive. 


But now, it's really only the needs of my family that can do this.  Work has become just a component of that larger theme, just one ride in the circus. 


Today we had to visit the hematologist for my son. Maybe it was crossing the Hudson and bisecting the city of New York through rush hour traffic that brought up the lights in my eyes. Maybe it was the nurses and doctors instructing my wife and I about the procedures for my son and what role we would need to play in those procedures that started the cacophony of sound in my head. I know for certain that my son's discomfort and the visible discomfort of all those children around us put me in full gear. That and the need to parse every precious word from the doctor's lips sent me into the kind of unconscious awareness that I've only felt while driving at night on the highway in a snowstorm. I was ON ON ON. 


That state lasted for hours afterwards, into my delayed work day, and into every conversation. I took everyone I met today for that ride. I hope they understand.  


And it's hard to turn off. Even, if like the lights at a baseball field, you just cut the power, the clusters of high voltage bulbs continue to burn hot and bright for some time and don't yield to the dark and the quiet easily. I'm not ready for sleep and wont be for some time. 


I'm grateful that I start some time off from work tomorrow. I'll have the hours tonight while the kids sleep to clean the house and pack us up. Then there will be the long, long ride to our destination. I hope the kids and my wife can sleep for some of that ride. I long for long empty hours and the hum of the tires to bring me down from the heights I'm still drifting at tonight. I need a those few quiet hours that even the Jersey boardwalk gets at night in the summertime; when the neon sleeps and only the splash of light from the pale moon and breath of the wind off the sea visit the circus as she rests. 

Wednesday, August 5, 2009

Blood-work

For those of you who know me or who have read my guest blog on Motherlode, you’ll know that my son has Cerebral Palsy. Without rehashing what’s in that blog entry, I’ll just say that it’s been a blessed struggle getting my boy started in this world. Each day of this last year has been like trying to conduct a regular work day in the midst of a winter blizzard; nothing feels easy and nothing feels normal except the demands. 


I’ll be writing more about my son and the impact his condition has on our lives - both good and bad - but for tonight I’d just like to mention our pending trip to the hematologist. One of the worst things about Cerebral Palsy is that because it is a kind of a brain injury, there is no script for the symptoms or the ultimate affect the condition will have. We won’t know for years what all this means for him or for us. Every day is a kind of dangerous adventure. 


On Friday we have to take another scary step along that path of unknown threats. We have to go and determine if he has a blood condition that might have brought on his pre-birth stroke; or if his mother or I have the condition. It’s the kind of appointment that makes a trip to the dentist feel like a night on the town. I’d rather be going anywhere but to that medical center. 


We’ve been on several trips like this now and I’m beginning to know the routine of feelings that I’m likely to go through. Apprehension in the days that precede the visit and a silent wish that we could just cancel; a hardening of my feelings on the actual day, pre-meditating the experience of meeting a new and potentially cold doctor; and prolonged anxiety after the visit until the results become available and we know for sure what the damage is - if any.  Oh, and the residual anger that I usually take out on the insurance companies and the doctor’s billing offices when I receive five separate bills from five separate billing offices for a single office visit. 


As I grow accustomed to these patterns of feeling, I’m struggling to ward off the helplessness that creeps into my heart at their approach. I feel sometimes like a young vassal to a mythic king in one of those tales of derring do; poorly armed and inexperienced and approaching the den of the beast or the stronghold of the enemy; and I struggle to keep the thought of my son’s peril in the foreground to keep up my courage. I can’t let him down. I can’t. 


But I know very well that there are forces at work that could easily overwhelm all the wits and will and courage that I hold out against them. I know it. 


I’ll do tonight what I’ve done for as many nights as I’ve known the path my feet are one. I’ll say a prayer against the things I can’t outmatch and I’ll say a prayer for the courage and focus I’ll need to ward off the things that I can confront. 


In the end, my son has my blood in his veins; mine and my wife’s. I hope there’s health and strength in it. I hope it’s proves to be a hidden strength and not the hidden danger that I fear.