Here we are, 20 years old

Today, Sofie turns 20 years old. In one more year, she's no longer eligible for public school, and I pointed that out to Randy. She loves the bus, and she loves to go to school. Randy shushed me and I'm glad he did. "Let's not talk about it." The idea of our last year of school kept me awake around midnight last night. Sometimes it's a relief to pretend.

I had always said that one day I would post the story of exactly how Sofie's life came to be. It seemed more important a few years ago, and less so now. But I'm hashing it out as briefly as I can for the friends and family who've been curious but maybe never known.

I was 37 years old when I was on a short flight to Boise and fell asleep on the shoulder of the passenger sitting next to me. I woke up and apologized profusely and wondered what could be wrong with me? I've never been a napper. I didn't feel sick. But a little voice told me to buy a pregnancy test as soon as I got my rental car and situated and so I did. The test strip was positive for a pregnancy. And I nearly died as we'd trudged through infertility issues and treatments for a few years and I'd sort of given up hope. I called Randy and he nearly died too.

Twenty years ago today my water broke. "Are you sure?" the triage nurse asked. Sometimes I cannot believe the questions asked in medicine. And so we were checked in. It was such a relief to be to this point. The disbelief at this miraculous pregnancy, and then making it to 40 weeks with no issues (outside of maternal age) was an incredible relief. I was so naive and blissfully thought we were good. I would be wrong. So wrong.

I remember looking out the window and seeing the snow come down, heavily and peacefully. The rumor was the power was out and the hospital was running on a generator. Our veteran nurse had another patient in labor. Maybe even a third, in varying stages. I remember pushing for hours and hours. Sofie would descend down the birth canal and make progress, and then spring back up. The OB resident would come in and check and trace her fingers around the top of Sofie's scalp and tell me to push, and I would, and then she'd comment that the pressure on her fingers was painful. She had a medical student do the same, with the same result, and maybe even another veteran nurse. Yet we continued the same course. Pushing, snowing, pushing, snowing... Later the nurse put me on oxygen. Pushing, snowing. We kept asking her to reach out to our doctor, to please call him in. But he didn't come. She said the fetal heart monitor was reassuring. Until late that night when it wasn't. Then our doctor appeared. He was quiet and quietly asked for some forceps. They brought out a mirror thinking that would reinvigorate me as I was beyond exhausted. I saw the silver reflection of the forceps and while I knew it was not a good sign I knew we needed help. Finally she was delivered...face up. Her cord was wrapped tightly around her neck. There was no cry. I remembered thinking, aren't babies supposed to cry? She was blue. The nurses tried to put her up to my chest as a reflexive bonding mechanism, but I knew she needed medical help far worse than she needed me.

A little while later, they brought her back to me and she looked beautiful. And she looked okay. She was swaddled and looked comfortable but started the tiniest little "grunting" noises. Very, very slight. Randy and I didn't know what to make of it, but it didn't seem as though anything was wrong. And she didn't latch. A girlfriend of mine came to visit that following morning and noticed her difficulty latching and then instinctively unswaddled her. Her feet and legs and mid torso were blue. The next while was a blur of shock on the heels of exhaustion. An emergency CT of the spine and brain. The NICU nurses asked if I wanted to speak to members of the Mormon church, who were handy. I said I would take anyone. Two kind gentlemen approached, and one began to tell me "he'd lost a child at birth". I stared ahead, so I'm going to lose this precious child at birth? So they're here because she's going to die at any moment and everyone must know this. I didn't hear anything else he said. They performed a blessing. A nurse practitioner from the NICU advised we let her go. She said Sofie would most likely end up with hydrocephalus and it would be a terrible life for her and us. I didn't hear anything else she said. The room was spinning. But in the background I could sort of hear the NICU physician on a phone call with a doctor from the local children's hospital. I remembered being so grateful that this man, who had just been a complete stranger to us, was trying his hardest on our behalf. He looked frazzled but took marching orders from the doc on the phone. He took out a needle and stuck it in the side of Sofie's head and started pulling back on the syringe. He said the doctor told him he needed to relieve pressure on the brain. He filled the syringe up with blood a few times and then she was whisked off to the Children's hospital. Randy went with. I sat in my blood-stained gown in a wheelchair in disbelief. 

I left against medical advice for the Children's hospital. We waited in the waiting room for what seemed like an eternity. Finally the pediatric neurosurgeon came out. They performed an emergency craniotomy (on a newborn, no less) because Sofie has suffered a very large subdural hematoma that had caused her brain to shift. She coded on the operating room table. Twice. The doctor told us "if she lives 72 hours, she might make it". I kept thinking 72 hours, 72 hours. That seemed like such an eternity...and then to think she might not live after that? How would we get through this? A day or so later, I drove home to take a shower, and passed the same cemetery I'd always passed and I thought maybe we can bury her there. I remembered wondering how does one even plan a funeral? Being the practical Midwesterner that I am, I thought maybe I could return the baby furniture. That night I read about a culture that among its most superstitious believers, does not decorate the nursery until after the baby is brought home. I thought they were the wisest people on Earth.

By the grace of God, Sofie did survive. We survived. Our marriage survived. It has not been easy. There have been lots of surgeries since. A few close calls. And we've survived those, too. Thank you God. I suppose we need to make future plans, but it is hard. How will our girl ever understand our absence one day? The idea brings a lump to my throat and a tear to my eye. So much worse than the end of school. No one will ever love your child like you will. Except for the heroic doctors who kept her here.

Aunt Bev

This is not an obituary. It’s my own take on my Aunt Bev and why she was so special.

If you were stranded on a desert island with my mom, you would survive. She’d figure out how to build a hut, and you’d work your fingers to the bone making it.  She’d want to look at the sunset and the shells and the flowers, but there wouldn’t be time. If you were stranded on that same island with her sister, my Aunt Bev, you’d be busy looking at the sunset, the shells and the flowers. And then you'd find something else wonderful to look at. And then a storm would whip up, and you’d be clinging to life wishing Mom was there to help. That’s how I always saw the two.

My aunt took a brave leap of faith some time in 1967, I’m guessing it was. She and my mom had lost their mom, and their dad who emigrated here from an unknown country had died many years before. My mom was a young mom, but Bev was single and I guess ready for an adventure. She left the familiarity of East Galesburg, Illinois, with family and some good friends nearby for the unknown. She never married. She never had children. She had a shot at marriage at least once. I was a grade schooler and she’d come back for a visit and a local man came to the house to take her on a date. He brought flowers. My mom really wanted her to like this man and live closer to us. But it wasn’t going to happen, she was not interested. I was a little sad about that, because I wanted her nearby too, but happy that I would still have this exotic aunt from a land far away. California.

When she visited us, her suitcase would always be filled with surprises for us. She loved sparkly things and wore very big rings, at least for our taste at the time in the cornfields of Altona.  She was a large woman who almost always wore black, and girdles back when they were girdles and not shapers. Sometimes she’d wear two. She liked frosty eyeshadow, and she liked to put her hair in rollers but didn’t like to brush out the definition from the rollers too much. You could look at her hair and see almost exactly where each roller had been. Sometimes she’d swirl the little tendrils at the side into a lollipop shape and pin them with a clip. Even her handwriting was swirly. She had the most unusual, artful handwriting I’ll ever see. There was cursive and then there was her cursive. Uber, mega, super cursive. She was curvy. It all made sense. Her curves made for good hugs, and, as I would consider us non-huggers up until lately, it was a nice change.

Her suitcase would have an endless supply of interesting items and when I was in the 5^th grade, I learned that those interesting items were just a sampling of a house filled with interesting items. I lived with her for a summer and was too young to realize that the boxes piled high to the ceiling and rooms with literally a narrow pathway through them was a symptom of mental illness. Years later, it was high school graduation time. The graduation party had barely ended. but my bags were packed. I was leaving for California the next day and would live with my Aunt Bev for awhile and establish a residency and then go to college there. And then the phone rang. Aunt Bev couldn’t or wouldn't talk to me. I stared at a plate of leftover mints while I listened to mom’s end of what was a somber conversation. There were lots of “uh-huhs, and okays” and I knew I was about to learn something very bad. It seemed the trinkets and treasures in my Aunt’s house were apparently packed a little too close to the water heater and there was a small fire. When the landlord saw how she had lived, he immediately evicted her. My great uncle, who lived nearby and helped my aunt a lot through the years, brought in a dumpster and cleaned out her house and helped her find a new place. He found thousands of dollars tucked in books and bags. Hundreds and hundreds of other things. She was a collector. I know he was frustrated with her, and my mom and sister were, too,  a few years later when they flew out to clean out a different apartment so that she wouldn't lose it.  Despite all the work they did, about a year later Randy and I and Krystal and Sofie flew out to move her into some rent controlled housing for older people or people with special healthcare needs. I could barely see the tracks of the work my mom and sister and others had just done. I hate the term hoarding because it’s just an ugly-sounding word and I feel people have been trivialized on TV, but that’s the word we use, I guess. It was severe. Severe. Hundreds of ink pens. Maybe 50 bottles of Flonase. You’d come across an envelope, it might have a note inside, a napkin, a sugar packet, a gift tag that had a pretty design on the front, and maybe a check or a 20 dollar bill. There were dozens of these types of envelopes, filled with treasures and what the rest of us might call trash. Things were packed inside of other things inside of other things. You get the idea. But we managed to move her into a new one room apartment so the ability to collect was greatly reduced, or so I thought. Plus there were meals available in the cafeteria. There would be people to check on her. So many positives. I thought this would change her. I was so naïve.

I’m sorry to say that as our life with Sofie became more complicated I really lost touch with her. When mom called to say Bev was in the hospital and it wasn’t good at all, I rushed out there as soon as I could. In a matter of hours, she went from talking to the emergency room doctors telling them she just wasn’t feeling good to being put on life support. It seems she had a bloodstream infection and cirrhosis, not from drinking but probably diet. I got there late at night and stayed until the early morning hours. She wasn’t good at all, but in just a few more hours, the septic shock had completely declared itself. When I walked back into her room later that morning, the nurse shook her head and said they’d had a bad morning, and they had. The doctor recommended withdrawing life support and transitioning her to comfort care. I talked to mom and we agreed. She died within minutes of stopping the IV blood pressure medicines. It was devastating, as losing a loved one always is. But she did not die alone.

I went to where she lived to gather her things. She had been moved into their skilled nursing facility a few months ago. They had dismantled her regular apartment a month ago, and she had told the housekeeping staff to take what they wanted and throw out the rest. It was so ironic that there would just be two small bags of her things. Mostly papers and letters she had written but not mailed. Later that night, I went through the papers trying to piece together her life as of late. Her swirly handwriting was ever present, but you could see some tremor in some of the loops. She didn’t always finish sentences. Some sentences didn’t make sense. I saw where she had jotted down, I love my sister and of course, I cried. She did love her sister and her family and friends, and she loved life. Even at the end. Even a quality of life many of us would think didn’t contain a heck of a lot of quality, as she was mostly confined to a bed. Still, she wanted to live to see all the beauty and sparkles yet in life. Even her heart was “bling-y”, for it too, was a heart of gold.

As the stack of bills and statements and half-written letters and notes dwindled, and I was opening one of the last envelopes, I caught a little blur of something that almost resembled a tiny feather float its way down onto my hotel mattress. Turned out not to be a feather but a perfectly preserved violet that had been tucked away, for no other reason other than it was beautiful. And it was. And that would be my Aunt Bev.

No Basement

There is something about having a basement that lets one put off making decisions.  Can't decide whether to keep that wine rack that's too big for the kitchen?  Put it in the basement.  What about the bookcase that can double as a room divider that you bought at Ikea in Pittsburgh that's light-colored wood and even though you would have preferred a darker wood, it's still in excellent condition and so you hate to part with it?  Put that in the basement, too.  In the back room of the basement were bins filled with items too precious to let go, but too painful to go through.  They were Sofie's baby things. Bins filled with baby blankets, some of them sewn and crocheted.  Some graced her crib during that first month in the NICU when we weren't at all sure she would live.  Another from the second surgery she had to repair her skull.  Since this surgery finally worked, I took it as some kind of sign the blanket needed to be with us and so I had to take it home.  Which I guess means I stole it.  There's another bin full of stuffed animals.  I couldn't even begin to tell you who sent which animal but many of them stood watch over her.  And there were clothes I had collected long before she entered this world.  Beautiful little outfits for this beautiful little child we had long awaited.

Moving day came and I overheard a well-meaning neighbor who helped us move tell another helper that he wouldn't believe all the plastic bins he carried up from the basement.  I knew exactly what he was talking about and I have to say not all of the bins were Sofie's things, but many of them were. They took up a lot of room in the trailer that we worried wouldn't be big enough to cart away our life. This is the second time we've moved these bins cross-country.  A few years ago as we were contemplating moving to the Midwest,  I asked my husband if we shouldn't go through her baby things and he quickly shut me down, saying he didn't want her things touched.  My husband is generally rather easy-going, so a response like that signals absolute seriousness.  And so they were left.

We moved out of an 1800 square foot home into an 1800 square foot home.  But there is no basement. There's no need to duck from a tornado here and apparently no need to hide things you can't make a decision about either.  So all of the basement overflow landed in the garage.  Our dreams of parking both cars in the garage, out of the 115 degree heat at the time, were dashed.  Maybe it was a combination of the heat, and the pink peeking through the clear containers facing me every day,  or the sheer ridiculousness that these items had sat for 10 years now, that it was finally time.  I opened one bin and grabbed the first few pieces of clothing on the top and brought them to my nose.  I know that mothers who've lost a child or wives who lose husbands must keep clothing tucked away just for musky smells that must remain.  But there were no such smells.  Only Tide and Downy.  And the tiniest bit of mustiness that told me these clothes need to go to a new home and soon.  So I started making a pile.  The truth is I could only remember her in a handful of onesies, so I kept those as well as the animals and baby blankets.  Many other clothes still had price tags on them, and I felt so wasteful. After Sofie was born I read an article about how many traditional Jewish families don't set up a nursery or have baby showers or gather any baby items before a baby is born, and I thought how wise they were.  I had always said if I were to ever have another, I would follow in that tradition.  The pain of dismantling a nursery would be more than I could bear.

I have made half a dozen runs to the local Goodwill with bags of her items. Sometimes I have hesitated for a second, and even been guilty of pulling an item or two out of a garbage bag at the last minute, but they were all, in fact, handed off to the workers who don't give one time to hem and haw.  Which is a good thing.  The other day as I was dropping off a couple bags of her clothing, I thought, hey...I could go inside and if I see some of her things I could buy them.  But then I realized that sounded like a desperate mother who might be in need of a few rounds of therapy, and so I drove on home.  I pulled into the garage, which now holds two cars and a lot of special adaptive equipment for Sofie.  As hard as it was to let go of some of those things, I do feel like a load has been lifted.  Somewhere a perfect little baby will be wearing one of her perfect little outfits.  And I know that our although things did not turn out in any way I had ever imagined, our little Sofie is perfect in her own way too.

The Feeding Tube

It's been awhile.  I scratch my head a little as to why that may be.  I took up blogging while in the midst of going to nursing school at night, while working full time and, of course, managing Sofie.  I had a long list of possible blog topics, and then I graduated from nursing school and just sort of lost the urge.  I was cleaning the basement recently, and came upon a huge stack of papers I had written in nursing school, and had to remind myself that, yes, I did write all of those, while I was working, and being a wife and mom.  I started to tell myself I wouldn't possibly have the energy to do all of that now.  But then I remind myself how many times I've had that thought, and somehow we manage to find a way.  I'm sure we can all relate to that.

So that's the mini explanation as to where I've been.

But a major change has happened and I suddenly want to write about it, even though I am a little bit afraid to.

I was talking to my mom the other day.  She had called me on my birthday, but I missed the call and it was days before I could call her back.  I was exhausted.  Sofie was on "Spring Break" and I had taken vacation time from work because we couldn't possibly find anyone to help watch her.  It's no one's fault.  She is an exhausting little girl.  I apologized to my mom and told her that taking care of six patients on ventilators at work for twelve hours is easier than watching Sofie.  It sounds so terrible to say that.  But between a brain injury and autism and seizures, her mind and body don't stop.  Several times over the break I wanted to cry because I wondered how her school staff could possibly handle her without losing their patience and it made me worry for her safety.  Her last aide lasted only a few short weeks before she found a new job.  Her aide turnover is very high.  I remember my school days and learning about Helen Keller as a child, and how she'd bite and scrape and scratch, and overturn and break things.  Sometimes it would feel like we were raising a little Helen.

The week culminated with our annual visit to our neurologist, Dr. "Z".  By the time we got into the exam room, I was already sweating from wrestling with her.  I had put her braces on her, so she could stand on the scale, but she wouldn't stand long enough for a weight to register.  She immediately discovered the top of the scale was wobbly and could be manhandled, so she grabbed it and jiggled it to the point I thought it would break,  and then noticed a cart with a scale on it for babies.  She made a run for that and tried her best to make off with it.  She has long been obsessed with anything with wheels.  Once she gets a grip on anything with her left hand (the only hand she uses), that grip is so strong now we have a hard time releasing it.  A stern face and the word "no" mean nothing.  As if trying to comfort me, the nurse proclaims she's a busy girl,  a saying I've heard a million times and I hate.  Thankfully we didn't have to wait long for Dr. "Z".  She smiled at him and made good eye contact, but it didn't last long.  She scraped his hand with her fingernails.  Her way of either acknowledging him, or trying to convey she wanted something from him.  She pulled hard on his tie, kept grabbing at the doorknob to leave, ripped the paper off the examination table,  and grabbed at every tool he subsequently took out of his little black bag.  I hate all of those tools.  They cure nothing and generally diagnose heartache.  I had been reading that sometimes medications for ADHD can help children with brain injury and/or autism and so I asked him about it (even though she already takes so many medications).  He did not disagree, but wanted to give it the proverbial "couple more weeks" and let her get situated back in school from the break, and then decide.  Two more weeks sounded like such a long time.

The following day was her surgery to have a feeding tube put in.  Doctors have been putting a full-court press on us to do this, especially these last couple of years.  Even if we only used it to give her medications when she's sick and to hydrate her, they said, then it would be worthwhile and may keep her out of the hospital.  In my mind, I thought of a feeding tube as a symbol that we'd lost some battle, and I wasn't ready to surrender.  In nursing school, a couple of doctors suddenly appeared at my patient's bedside one day and and told me they would be putting a feeding tube (and tracheotomy) in.  I thought, okay...we've contemplated a feeding tube for Sofie, so maybe this is some kind of sign.  They prepped the patient and darkened the room and I tried to imagine her little body lying there. I watched as they snaked a little light through the throat and into the belly and when they saw the glow of the light under the skin, took out a scalpel and made a hole.  It was at that moment I felt weak and broke out into a terrible sweat.  My face shield steamed up and I couldn't see.  I made it to the back of the room just so I could breathe and dehumidify.  Needless to say, that did nothing for the cause.  Furthermore, I would think of the children in poor countries surviving on grain and water and thought of how delighted they'd be to eat the biscuits and gravy she ate for breakfast and dinner every day.  And the endless supply of Reese's peanut butter cups she'd eat in between.  Nevermind this was her diet for the last three years.

After this last hospitalization for pneumonia, my husband and I raised the white flag and started the preliminary tests to have a feeding tube put in.  I was suddenly on a countdown, knowing it would be the last few times I would see her soft little belly without the ugly feeding tube, akin to a view of the most beautiful countryside you've ever seen, with a huge utility pole jutting out of the earth.  I mourned the idea of putting a hole in her stomach, without her ability to understand why we would do this to her.

Thankfully, the surgery went well.  The nurse made us look at the site not long after, which is part of the acclimation process to a change like this, and we were discharged about 24 hours later.  I had decided that since we were going to do this to her, I would go ahead and supplement her nutrition with some Ensure so she didn't crave quite so many Reese's.  And I would add Fish Oil.  The expensive liquid Whole Foods kind of fish oil harvested in deep, cold water off the coast of Norway that sounds so good and tastes so terrible.  I tried it and nearly gagged on it, so I knew she would have too.  We'd be putting that through her feeding tube, and iron.  We learned she was slightly anemic at her last hospitalization and it took her a while to get off oxygen so we could go home.  The only other change would be 1000 micrograms of Biotin, a B vitamin tablet to be given twice a day, that a doctor had been wanting us to try.  We'd just put this stuff right in the tube, because almost every bite of biscuits and gravy had a seizure pill or allergy or asthma pill hidden inside.  We were at the max using that route.

For the first few days she hurt a little and was subdued from the pain and pain medicine.  On the fourth day, I took her to a local mall, which for the last while had become an exhausting experience.  She would grab at every item she could, pull items off the shelf just to watch them fall, pull down "sale" markers and knock over displays.  And then there's the checkout.   In the time it takes to reach into your purse, pull out your wallet and grab your debit card, she has pulled down shelves of trinkets and store gift cards and overturned boxes of candy and tic tacs.  Lately I would have my debit card in my pocket so there was no fumbling and fewer angry looks.  I wouldn't even think of getting into a line with more than a couple of people ahead of me.  Well this shopping trip was different.

I took her to Old Navy.  She saw one of those plastic utility carts stacked with clothing and actually left it alone.  She didn't pull clothing off the racks.  She turned around in her stroller chair and smiled up at me.  I actually found her a few pieces of clothing.  She turned around and smiled some more.  I went through the checkout.  I wasn't sweating.  The cashier didn't say a thing about Sofie being "busy" and instead commented on what a pretty girl she is.  I sent a text to my husband.  "We're at the mall and she is like a different kid."  "How?" he typed back.  "Not grabbing at everything.  We went to Old Navy and it was a breeze.  Smiling and looking all around."  Just to be sure it wasn't a fluke, I took her to Wilson' Leather.  We didn't buy anything, but she didn't destroy anything there either.  We rode the carousel and she didn't try to bail halfway into the ride.  I took her to the shoe store.  She was a complete angel.  I took her to this "hippie" store I don't even know the name of with overpriced clothing from India and dusty geodes.  A sales woman approached us and made the usual small talk.  Sofie did grab her hand and smiled at her for the longest time and just didn't want to let go of her hand.  I couldn't blame her.  She did have long, beautiful hair, and flowy clothing, and exuded peace and happiness and warmth.  I think I had a crush on her at that point.

I didn't say anything to her teachers about the change we'd seen, but as the bus driver pulled up yesterday to deliver her from school, she commented on how different Sofie was.  I wanted details.  She said she was smiling all the way home, and not trying to open other children's backpacks or unlock her wheelchair to escape.  They said the teachers noticed some big changes too.  I immediately opened her backpack to look for clues.  Her aide wrote about how she smiled and was eager for hugs and alert and interested.  And there was a piece of artwork that said "great job cutting and gluing".  That was the first time I'd ever seen a comment like that, and I knew it wasn't the teacher just trying to make us feel good.

There is no way to convey what these last few days have been like.  To us, it's almost as profound as if she suddenly started talking, and in fact, she's been trying to make a few consonant sounds.  Or maybe what it would be for a paraplegic to suddenly rise up out of a wheelchair and start walking.  Those are the two examples that keep coming to mind.

I hesitated to write about this for fear of jinxing it.  As we first started seeing these changes, I would say to my husband, "can you believe this?"   He would shush me and tell me that even mentioning this is like playing baseball and telling your your pitcher he's pitching a no-hitter.  But I'm so blown away I can't help myself.  I know that these changes have come about from some vitamin or mineral or nutrient she was missing.  We are so happy, but so mad at ourselves for being so stubborn.  We were so wrong.

I hope this change continues, but of course, I know there are no guarantees.  I do have a few other things that I want to add (slowly) to that feeding tube of hers.  That dangly calibrated rubber sculpture with a nozzle on the end.  The most beautiful thing I ever saw.

The Kayak

     There's a painting in our dining room that reminds me of a few precious people we have loved who are gone, the Olympics, and ultimately survival, I think.
     It's been boxed up in the basement, along with a few other paintings, safely packaged away until we decide our next move.  Maybe a little like a bottle of wine, it's gotten better with age.  Or maybe I'm just a little more forgiving of my fair watercolor skills.  Either way, I decided not long ago it didn't deserve to be in a box anymore.
     It was painted on the banks of an intercoastal waterway in Sunset Beach, North Carolina in the summer of 1993.  The only thing I've ever painted 'en plein air' and at the rate I'm going now, will remain the only one.  It's a painting of Randy on his flatwater kayak.  Directly behind the bank where I was sitting were some friends' homes where some legendary poker games were played.  I think all were Concord faculty and friends.  And like a little eddy in a river, when I think of Concord, my mind immediately circles to Bea Leist, a beloved faculty member and friend who passed away recently.  This painting conjures up many a memory, that all began with a terrible phone call.
     The phone call was the third terrible call we received in about a year's time, and the worst of the three.  A beloved nephew had taken his life.  It was a nightmare, surreal, painful beyond words and still painful to this day.  Randy adored this nephew (and his younger brother) and it hit him harder than I knew.  I became very worried about him and would find myself calling our house every night from the newsroom, to check on him.  And one night, at 10:30 when he didn't answer, I remember racing home because I had a feeling that something wasn't right.  He was fine--asleep on the couch.  I turned on the 11:00 news to see my co-anchor on the set without me, and the realization we had to do something.
     Somehow a kayaking magazine had made its way into our house, and in the back of the magazine was an ad for a flatwater kayak.  Randy had seemed interested in it before, and the sport in general, and so I called about it.  It was still there.  Six hundred dollars and at a kayak store in Brick, New Jersey.  We left on a Friday night after the late news, drove all night, and probably seemed like quite a pair when we walked in the store.  A young couple from West Virginia, road-weary, have never tried a kayak like this, and no rack on the car to get it home.  That's how desperately it was needed.
     A flatwater kayak is a tricky boat.  His was 17 feet long.  I'll never forget that because it wouldn't fit in some of our garages or moving trucks.  It was just wide enough for some narrow hips and very, very tippy.  The kayak salesman had warned Randy he was going to drink a little water while learning to keep upright.  Just the kind of challenge he needed.  He took the boat everywhere...to the Bluestone Lake,  Glenwood Lake, and the New River.  On the weekends I would join him.  He on the river, and I along the river banks, looking for arrowheads.  I could see him through the trees and at each glance, he would be a little straighter and going a little faster.
     Eventually he became pretty good at it and bought a stopwatch.  Not long after that, he said he wanted to buy some string.  He needed a spool with 200 meters.  And I knew that meant he was thinking about trying to race and that gave me hope.
     If anyone had seen us at Glenwood Lake, as I held the spool of string on the shore while he paddled out and tried to find a straight stretch that would make about 200 meters, they would have laughed.  But it worked well enough.  He kept going faster and faster.  The main thing is he kept going.
     A few months after that we joined the Washington Canoe Club.  A pretty grassroots organization of people who played on the Potomac in old boats like ours, and newer ones. We came to know Alexandra and Mike Harbold, who were members and each on the Olympic Kayak Team.  As a member of the club (I think it was only $17.00 a month), you had access to the beautiful historic boathouse at the edge of Gorgetown and you could sleep there (on the wood floor) for free.  The floor was pretty uncomfortable, so we'd wake up early, but Mike and Alexandra were already up, running or using the rowing machine, because it wasn't light enough out yet to be on the water.  Eventually Randy raced in an event not far from the Canoe Club.  He did pretty well and continued to practice.  We heard of an Olympic tryout in Lake Placid, New York, and we went for it.  It was amazing to see the old skeleton of a ski jump in the summertime, arching up above the lush trees as we neared the lake.
     I didn't know what to expect at an Olympic tryout, but there wasn't a lot of pomp and circumstance. Mike was there.  There was a group of Cuban defectors who looked really fast and plenty of other racers we'd never seen before.  Mike finished first and would go on to finish sixth or seventh in the Olympics.  Randy finished a respectable race at the tryout and wasn't last. Pretty remarkable for the short time he'd been paddling.  On the drive home, we both joked that one day we'd look back on this and be really glad we went for it.  I guess these are those days.
     We moved from Bluefield, West Virginia to Morgantown and the boat came with us.  He paddled on the Monongahela River and when we moved to Salt Lake City, he'd kayak on the Great Salt Lake.  He'd come back with a dried layer of salt on the boat and I'd warn him that it might eat right into the boat.  It didn't.  We moved to Arizona, and the boat was leaned up against the house in the hot desert sun.  I warned him the sun would ruin the boat.  It didn't.  It survived and he survived.
     When we decided to come back to the Midwest, it was apparent that our moving truck would soon be out of room and couldn't accommodate a 17-foot long boat that had been sitting due to a shortage of time and water.
     He put an ad on Craigslist and surprisingly, within no time, a very excited guy came over and took it away.

     I miss that skinny little boat and all that it brought us.  Wherever it is, I am sure it is moving forward, as flatwater kayaks do.
     

Meeting Day

It's been awhile.  And although I have absolutely no time for this on this particular morning, I am determined to write this down.

I had to give a presentation once for my sales team at Pfizer.  The title was "The thing you are least willing to do is the thing that keeps you from success."  That's a sentence that requires some digestion.  The thing you are least willing to do is the thing that keeps you from success.  The thing you are least willing to do is the thing that keeps you from success...

As I looked around my sales team back at the time of the presentation, I could see my boss nodding in agreement.  One of us wanted to climb high in the ranks of the corporation, but was absolutely unwilling to move from his beloved home city.  That was his thing.  There have been couples I have known where one partner would do anything to save their marriage, except go to counseling.  And that was probably the thing.

This morning a group of neurologists and neurosurgeons will be meeting to discuss difficult cases, and Sofie is on the agenda.  They will be discussing if she's an appropriate candidate for a vagus nerve stimulator to be put in her little body.  It amounts to a little unit, attached to a lead that ends on the vagus nerve, and sends little shockwaves through the nerve and into the brain.  It can be adjusted, it can even be turned off, but if it doesn't work, can rarely be taken out.  So you're stuck with this device until who knows when.

The mere suggestion of this by a doctor about three years ago, nearly caused me to vomit.  But I worry about the toll these epilepsy medications is taking on her body.  And sometimes I wonder how well they are even working.

Anyway, this is my thing.  This is the thing I've been least willing to do.  So I will anxiously await a phone call today...

Who touched my stapler?

I've never really worked in a cubicle all day before.  As a reporter, we had cubicles, but they were basically just a place to crash, and wolf down some fast food while you hurried up and typed in whatever story you were working on as late as five minutes to news time.

My first 'real' job was cleaning a church with my sister.  She and I were convinced that little old ladies were hiding little old pieces of lint under the church pews, just to see if we were vacuuming like we were supposed to.  We were in junior high and high school and probably wrong about that, but we would always worry we might lose our job.  During many summers, we would also 'walk beans' to make extra money.  It essentially involved walking up and down long rows of soybean fields, chopping down weeds.  We 'detassled' corn too.  That was a bit of a step up, as you weren't walking, but riding in a strange-looking machine up and down corn rows, pulling off the female corn tassle, so the male tassle would do its job and pollinate the female rows.  This eventually resulted in 'seed' corn, which is the type of corn you would plant and not eat.  Sometimes the job would gross me out, because I would start to think of it as a big cornfield of sex, and I was a sweaty and sunburned partner in it, covered in pollen myself.

In college, I got a job in the City of Kirksville's code enforcement office.  I have no clue how I got that job.  I had no idea what water mains and meters were about and what sizes they needed to be, but I had no problem recognizing an angry contractor.  A friend of mine who lived in the same dorm got hired in the same department that summer, too, as a weed inspector.  Her job title would get a lot of laughs, but nobody was laughing when the property owners would call in after she wrote them a ticket.  Her job was literally driving around town with a yardstick and measuring weeds.  Weeds that were too tall, landed the owner a ticket, and her a death threat.  I figured I would have been better suited at that job, with my bean-walking experience, but when I'd see how angry people would get about their tickets, was grateful to just deal with the angry contractors.  The code enforcement job helped me to land another job with the City, as a police dispatcher.  The last year or so of college I would work from 11:00 p.m. to 7:00 a.m. as a dispatcher, and then go to my classes, and try to go to bed at 4:00 p.m.

After college I worked in TV news for about eight years, and left to work for Pfizer for about ten years.  Pfizer had a big downsizing in 2007, and my job was cut.  I took a year off, we moved back to St. Louis and took a job with another big corporation.  It soon closed the division I was in, and I found a job with another big company, and it soon closed the division I was in.  Tired of Corporate America, I decided I wanted to be a nurse practitioner, and so off to nursing school I went.  Nursing school (and life in general) is expensive, so I recently found a temporary job for a large managed care company.  It's a great (and growing) company.

The office is warming up to me.  Our department is made up of about 50% permanent employees and the rest of us are temporary workers, who may eventually be full-time.  This creates an interesting dynamic that I won't even go into.  My manager (who I like very much) recently told me she thought I could go far in this company.  It's flattering, but dangerous, like a pick-up line at a bar.  Because I know when companies are in trouble, they eat their young.  I've been gobbled up a few times.  But at 45, I'm also wise enough to know to never rule out anything.  I told my manager I'd think about it, and I honestly will.  But I also think about working as a nurse practitioner somewhere in Arizona, taking the best care of people that I possibly can, and volunteering regularly at a free clinic or with one of the local American Indian tribes nearby.  I see myself dripping in turquoise, and not 'business casual' attire.  Out of a cubicle and among people...listening, learning and helping.