Breaking News– The Diagnosis Is Here!!!

Koan with the Easter BunnyI’ll write more later, as I’m too excited to be truly reflective.  However, I just got word that our latest round of genetic test has yielded a definitive result.  Koan has a mutation on the KCNQ2 gene.  There is a spectrum of symptoms that come with this mutation, unfortunately, Koan is on the more severe side of the scale.  We believe Koan has Early Infantile Epileptic Encephalopathy (EIEE7).  If you want to learn more (like I do!) Check out —   Here are some salient points in the short term.

  • This disorder is not the familial variant — so it did not come from Jeri or me and better yet — Sydney and Tiber have no greater chance than anyone else of seeing this in their children.  They are guessing it was a de novo mutation — so completely random.
  • As side from his current symptoms, there are no new symptoms or other emergent problems we need to worry about in the future.  His life expectancy is as normal for anyone with a seizure disorder.
  • It sounds like there are a couple of families of anticonvulsant drugs that work better than others for people with KCNQ2.  So, we’ll be following up with his neurologist to be sure he’s on an optimal medication.
  • This is an international KCNQ2 community — including two other families in Iowa  (Victor and Bedford).

Again, I’m sure there will be more information and thoughts.  My head is spinning with all of the possibilities and revelations.


What’s That Sound…?


Koan Under the BedSo, this picture bears some explanation.  I still smile each time I see it.  I took it a couple of weeks ago on a Saturday.  Koan does not enjoy weekends all that much.  School days are much more interesting for him.  As with most kids, boredom often equals mischief.  On this particular day, I heard a strange set of sounds coming from our master bedroom.  Koan was talking.  He wasn’t in distress, but his voice sounded really strange.  It was unlike any sound I’ve ever heard him make.  So, I got up and investigated.  I just about fell over laughing when I saw his situation.  He managed to enter our master bedroom (a room he’s not allowed to access by himself) and trapped himself under our bed.  Yes, I did take time to take the picture before freeing him.  He got himself into that mess, so he rightfully, just like any other person, deserves a little mocking before being released.  Koan doesn’t or can’t (I’m not sure which it is frankly) move on his belly — he never “army crawls”.  So, how he got his head and shoulders that far under the bed while on his stomach is anyone’s guess.  But, he was truly and fully stuck — going nowhere.  This was a little like Koan’s “Leave It to Beaver” moment — the one where the Beav get’s his head stuck in the stairway banister.  Of course, this predicament was a little easier for us to solve.

What’s not as obvious, but nevertheless also undoubtedly true about this photo, is that it show just how much Koan has trained or modified the behavior of everyone in the family.  Over the past year or so Koan has developed a new habit.  He will cry and get upset everytime he hears a door close in the house.  I think there are at least couple of reasons for this that are pretty rational — even cleaver.  First and foremost, Koan associates the sound of a door closing with someone leaving the house — without him.  In his mind, this is a completely unacceptable outcome.  He so enjoys travel, that regardless of where someone is going, he wants to go every time.

However, in the last few months, he’s generalized his dislike of the “door closing” sound to all doors in the house — the basement door, any of the bedroom doors, the bathroom door, etc…  This is, as you might imagine, pretty annoying.  My guess is the main reason for this is that he also realizes that when a door closes — not only might someone be leaving without him, but almost as importantly (to him) someone has possibly, unilaterally restricted his access to movement throughout the house.  It doesn’t matter to him that this is by design — we don’t want him tumbling down the basement stairs or getting into the bathrooms.  But, here’s the interesting part,  his displeasure at this sound has subtly modified everyone else’s behavior.

Because, he hates that particular sound so much and we all know it, we’ve all developed our own set of coping skills.  Sometimes, I’ll try to shut a door so intentionally as to avoid making the sound at all.  Others will sometimes not latch a door (giving the door the appearance of being closed without being latched) — it’s the latching sound that he objects to.  And, other times, I think I’ve latched the door softly, but in fact, the door is not really latched at all.  All of these behaviors play right into Koan’s master plan.  One of his favorite pastimes is to scoot up to doors and push them to see if they are latched.  More times than you’d think, he succeeds in getting into a space that we don’t want him to access.  So, he’s trained us to let him misbehave — the twerp!

Part of my glee in taking the picture above is that he got a little dose of karma.  He got into a space he was not supposed to be in — he knew that, too.  And, he got stuck.  I find this is one of the great rewards of parenting, any child, when mischief reaps it’s own just reward.

Diagnosis Update: He’s No Angel…

Koan with his chin on a table.

This is an update post in relation Koan’s genetic testing. I got the phone call yesterday afternoon from Lily, the genetic counselor at U of I Children’s Hospital.  She had barely finisher her “hello” before I blurted — “What do you know?”  I’ve been waiting for this call for weeks — since December.  The anticipation of a confirmed diagnosis had been getting harder and harder to bear.  But, of course, Koan has thrown us another curve ball.  He has none of the genetic markers associated with Angelman Syndrom.  I was really surprised.  Over the last few weeks, I had convinced myself that this was it — we were finally going to get a concrete answer.  Angelmans just made so much sense.  He looks like an Angelmans kid and has so many of their traits: he flaps, he has the emotional affect, he loves water, he’s mobility challenged, and he’s speech challenged.  That had to be it.   Nope!  Lily told me she was surprised by the results as well.  In fact, she said that given what she saw of him, she would have bet money that the results would have come back with a positive Angelmans result.  So, now we go to “plan B.”

We are going to continue to look for a genetic diagnosis.  The next set of tests we’ll run is a wide-sweeping panel of epileptic disorders.  This plan here is to take a concrete look at his existing symptoms (seizures) and start there.  This is also pending approval from our insurance provider.  So, we’ll keep our fingers crossed that they will approve this next test as well.  Assuming they do give approval.  We’ll need to get another blood draw.  But, unlike the last time we did this, it sounds like the lab has a service that will actually visit Koan’s school.  While that will be disappointing for Koan — no trip to Iowa City — I think it’s pretty cool.  So, if everything goes according to plan we should get results of this testing back in early May.  Lily indicated that when we get the results back for this testing, there will be three possible results: positive for a genetic epilepsy disorder, negative for all disorders, or inconclusive for one or more disorders.  Knowing Koan, I would lay odds on the inconclusive result.  That’s just his style apparently.  Actually, I think there’s a pretty good chance for an overall negative result.  His EEGs have never indicated anything definitive, just some anomalies.  So, from a physiological/electrical perspective, he’s never been diagnosed with epilepsy.  If the epilepsy genetic panels do come back all negative, we’ll move on to the next set of possible disorders and start the process again.

While I was initially disappointed, — it would have been awesome to get some answers — I’m not feeling all that bad now.  Just like his name’s meaning, I think there’s wisdom to be uncovered in not knowing.  Having an answer and a label would have been great:  support groups and a possible roadmap for what to expect going forward, etc…  But, personally, I’ve never felt comfortable letting others define who I am.  I’ve found it’s much more meaningful to grow my own identity.  Maybe this is Koan’s way of doing that for himself.  Don’t get me wrong…  I still would like to know what’s caused all of these issues for him. And, we are going to continue to pursue these answers as long as it’s feasible.  But, as with so many things in life, the process or the journey is more meaningful than the answer or end result.


Waiting for Results

I am Medicaid IowaA few weeks ago, I wrote that we had asked for approval from our insurance provider to do some additional genetic testing on Koan to see if they could pinpoint the cause of his disability.  The good news is that we have been approved for more testing.  We got approval on a Friday and I took Koan down to the University of Iowa Children’s Hospital on the following Monday to do the blood draw.  I wasn’t sure what time the lab closed at the hospital, so I figured it would be best to get him down there before 4:00 PM.  I was assured that we would not need an appointment to do the draw.  Here’s the story of that day.  There’s nothing earth-shattering here.  There are some cute moments and the rest is just day to day “life with Koan” anecdotes.

I arranged to pick Koan up early from school that day — around 3:15.  It takes about 30 minutes to get to the hospital from the Prairie campus.  Koan’s school day normally finishes around 3:45 PM. He was in the office waiting for me when I arrived.  It was great — when he saw me come in the office he flipped out.  There was an ear-splitting screech of joy and a great deal of happy-dancing in his Convaid.  He nearly jumped out of it.  There was so much commotion that the building principal stuck her head out of her office to see what was happening and to make a joke.  Stacy Pasker, Koan’s teacher, told me later that she heard him, too, and knew that I had arrived.  It’s pretty fun to get that kind of greeting.

I packed him into the car and folded the Convaid into the trunk.  As we exited the Prairie campus, I turned right coming out of the roundabout on Kirkwood and headed south.  Koan was already having a full-blown dance party in the back seat of the Civic (shaking the whole car).  As I did this, he took it to a new level because he knew we were not heading home.  Like his old man, Koan loves to go to Iowa City.  So, as we got on the ramp to  380 south, became even more excited.  I actually thought he might pass out or hyperventilate.

By the time we got to UICH, he had calmed down a bit.  I navigated the Civic through the underground parking ramp and found a handicapped spot a couple of levels down.  I then got the Convaid out to the trunk and set it up.  It’s always a bit of wrestling match getting Koan out of the Civic. It’s much easier to move him in and out of the van.  Not only is he tall and rather heavy now, he thinks it’s great fun to swipe the glasses off of my face while I’m using both hands to reach down and wrangle him out of the backseat.  This can be a chess match.  I try to find ways to pin one (or if possible) both of his arms so he can’t get to my face.  This particular time, I was able to restrain the left arm (his most dangerous weapon), but he cleverly used his right to swing across and connect with my nose.  To both of our disappointment — I was unhappy he hit me and he wanted to see the eyewear go sailing — my glasses were merely displaced (pushed to far right of my face and precariously dangling from my nose).   I also grabbed the #IamMedicaidIowa sign I had made.  I wanted a picture of Koan in UICH to share.  The #IamMedicaidIowa was a media campaign organized by Disabilities Right Iowa.  I would encourage everyone who cares about Koan to participate.  It’s super-simple.  Just take a picture with a homemade sign.  You don’t need to be disabled or a caregiver.  DRI has even provided all the text you can use to share.

I dropped him in the Convaid.  Straightened my glasses and strapped him down.  As always, I started with his feet (so I don’t get accidentally kicked) and moved up to his belt and arms.  We then wheeled to the elevator to get into the hospital.  When we arrived on at the lab doorway on the second floor, a friendly lab tech motioned us to come inside.  I explained that we didn’t have an appointment, but that genetic counseling had requested a blood draw.  He looked us up in the workstation and found the order.  I started unbuckling Koan from his shoulder straps.  I would need to take off his coat so the tech could draw blood from his arm — at the crook of his elbow.  Koan was still pretty amped up from our trip, so it was clear that we were going to need more help if the tech was going to be successful in drawing blood.  So, I let him know that and he called into a back room for some help.

Like most of us, Koan does not love needle punctures.  In the past, when he’s gotten a significant shot of medication he has given me (and Jeri if she’s there) a monumental look of betrayal when the stick happens.  Then there are tears and howls of outrage.  So, I was a little worried how this would go.  The two young ladies, med students I’m guessing, came in from the back of the lab to assist the tech.  That was perfect!  Koan loves the ladies — and for the most part — he’s popular with them, too.  He immediately starts flirting with them, coyly smiling, giggling, raising his eyebrows, etc…  Each one of them took arm to hold.  They also reciprocated the flirting — telling him how cute and handsome he is, etc…   This worked like a charm.  The needle went in, but Koan was so busy with the two students that he didn’t even realize he’d been poked.

After taking out several vials of blood, the tech removes the needle and bandaged him up. Koan was still having fun with the two lab assistants.  At that point, I asked one of the techs to hold up the #IamMedicaidIowa sign in front of Koan so I could snap a picture.  Fortunately, one of them agreed to help.  I then put Koan’s coat back on and buckled him fully into the Convaid for the trip back to the Civic.

When we arrived back at the car, I saw that in my haste to get Koan secured in his Convaid and up to the lab that I had left the back door open.  So, the whole time we were up in the lab, the back door of my car was wide open.  Luckily, nothing was taken.  We repeated our chess match while putting him into the car.  That time around, I fully won with no blows landed to my face.  Koan was pretty worn out from all the excitement and that made the trip home a bit easier and less dramatic.

I don’t know how long we’ll need to wait for results from this test.  I would imagine it will be several weeks before they will get back to us.  I’ll share information here when we do get it.  I will be pretty surprised if he doesn’t come back with at least some Angelman markers in his results.  But, who knows… Koan has a long history of being unexpected.

The Costs of Bloody Noses

Koan with a bloody nose

So, most — probably all — of the pictures I’ve posted of Koan on this blog are pretty cute.  This one, not so much.  The last few days were difficult at work for me.  We had an issue with our network at school that was impacting about 25 people.  That’s not too bad considering we support about 8,000 devices on our network each day.  But, the folks impacted by this disruption were all of our office secretaries and our payroll staff — a really bad group of people to have unhappy.  So, I was putting in a lot of hours in the evening and over the weekend to figure out what was happening.  Last Saturday, I went into the office to work.

Unlike most people, Koan doesn’t really enjoy weekends.  He doesn’t hate them, but frankly, school is much more interesting and fun than being at home.  So, when he saw me gearing up to go out, he let his feelings be known that he thought he should go with me.  And, of course, he was rather upset when I left without him.  I was working away in our data center when I got a text from Jeri with this picture.

Apparently, Koan cried himself into a bloody nose.  He had scooted around the sofa to see me out the door, and as everyone expected, cried when I left.  Jeri started Alexa playing the Sesame Street version of Wheels on the Bus to calm him.  When the song finished he was done crying and she looked up to and saw what’s in the picture.  The Barnum men all seem to have some proclivity toward bloody noses and clearly, Koan is no exception.

There’s a long history now of Koan having these events.  There was the time three or four years ago when we were driving to Omaha for a brief family trip.  Koan was in the middle row of the van.  Jeri and I were in the front seats and Sydney and Tiber were in the back.  At some point during the trip, Tiber happened to notice that Koan had quietly had a bloody nose. He never cried or let on that he was uncomfortable.  By the time we noticed it, the car seat looked like a murder scene complete with bloody handprints all over the van passenger window.  Luckily windows were pretty well tinted in that vehicle, but I still shudder to think what people in other cars and trucks may have seen before we cleaned everything up.  Later on that same trip, he had another bleeder in the hotel room.  Again, I’m sure the cleaning staff had some questions (probably concerns) despite our best efforts to tidy things up.  I half expected to get a call from the Omaha PD.

Koan’s most infamous bloody nose happened in January of 2015.  Right around bedtime (a little after 8:00 PM) on a Saturday night, his nose started to bleed.  Unlike most times, he seemed upset by the event and was crying, hard.  This, of course, made his nose bleed even more.  He even had blood coming out of his mouth.  There was a lot of blood and normally I don’t get too frightened by these things having had them myself, but this one scared me.  So, after a few minutes of not being able to calm Koan and slow the bleeding, we decided that we would take him for a drive in our van.  That’s a sure fire way to improve his mood.  And, we figured if the bleeding did not stop, we would head to the emergency room.

As soon as we got him in the van, his entire demeanor changed.  He was happy and very shortly — after just a few blocks the nose bleed stopped. Because we were so worried about him, Jeri sat in the middle row seat with him on her lap.  As we approached downtown Cedar Rapids on the interstate, Jeri indicated that we should pull over so she could get him (and herself safely buckled in).  I then, now famously said, “Sure, but I don’t plan on getting into an accident.”  I got off the interstate on the A Avenue exit and started to work our way home.  Again, Jeri asked to stop.  I looked at the gas gauge and realized we needed fuel.  So, I decided to stop at the Casey’s on the corner of 8th Ave and 2nd Street — right near the NewBo district.  Both of them could reposition and we would fuel up at the same time.

After we filled up, Jeri buckled Koan into his car seat.  But, she decided to stay in the middle row to keep an eye on him until we were home.  I was just happy that our stop at Casey’s had not infuriated him — Koan has an inherent dislike of gas stations — particularly the Kum and Go in our neighborhood.  But, he was fine with this stop.  I began the trip back home by heading into NewBo.  We hit a red light on the corner of 12th Ave and 2nd Street.  I normally would turn right on to 12th Ave to go home.  It’s slightly faster.  But, I decided this time I would go forward on 2nd Street and cross the river on 16th Ave and go through the Czech Villiage.  It would take a little longer, but Koan would appreciate the extra drive time, and it’s a little more interesting scenery.

The 16th Ave bridge is the oldest in town.  It’s very narrow with only two lanes of traffic — one each was.  As I pulled on to the bridge, I noticed a car, a compact station wagon, (the only other car on the road I could see either in front of me or behind me) make a right turn on to the bridge.  The driver made a really wide right turn, ending up in my lane.  I didn’t worry about it too much.  No one else was around and it’s a pretty long bridge.  There was plenty of time for that person to get back in their own lane.  But, as I got about halfway across the bridge, I was alarmed to see the other driver still on my side of the road and not slowing!

I had enough time to slow the van nearly to a stop and to yell back at Jeri and Koan to hang on.  The Subaru Forrester hit us head-on.  There was nowhere to go — the middle of a two-lane bridge — concrete and water on both sides.  The airbags deployed.  Glass, shattered plastic, twisted metal, and the burning smell from the airbag discharge covered me.  I yelled back to see if Jeri and Koan were ok.  After checking her self over and Koan, Jeri indicated they were both fine.  Luckily for Jeri she didn’t get to experience the impact of the airbag in the middle row.  That was much nastier than the actual impact.

I turned off the van’s engine and pushed my door open.  I was dinged up, but didn’t see any blood so I thought I was ok.  I started striding to the other vehicle.  It was still rolling backward from the impact.  I thought other driver might be trying to leave the scene.  Such was the adrenal rush, that I threw my van keys and whipped the baseball cap off my head and started running at the Forrester.  This is the only time in my life where I experienced true primal rage.  I was ready to kill or be killed.  Luckily for me (on many different levels) when I got to the driver door of the Forrester, I could see the person who hit us was an older lady.  I’ve never been in a true fist fight as an adult, but I’m sure I would have dusted up if the other driver had been male — regardless of size.  That probably would have gone badly all the way around.

Despite the fact it was January, it was a beautiful night — about forty degrees.  We had left the house in such a hurry none of us had coats.  So, we sat out on the bridge and waited for the police to show up. Koan flirted with all the people out walking around that night (and there were many). I didn’t spend much time with the other driver, but it was really clear that she was significantly impaired — alcohol or drugs.  So, I just tried to stay away from her.  When the police arrived and saw the scope of the damage — neither vehicle was drivable — they called an ambulance.  I had some minor cuts and a few bruises — mostly from the airbag.  It looked like Koan and Jeri were completely untouched.

When the paramedics arrived, we had to spend a good bit of time convincing them we were all ok.  It took even more time with Koan.  Of course, he’s non-verbal so we had to answer for him –and they weren’t sure they could trust us as we were pretty shaken, too.  But, worse still — Koan was covered — much like the picture above — in blood from his bloody nose earlier.  So, they needed a lot of assurance that he was indeed ok.

Our van was totaled and we had to get a ride home in the back of police car.  Koan thought that was pretty great!  The rest of us, not so much.  Last Saturday I confirmed that Koan was ok.  Jeri let me know the carpet might not be the same again.  My main thought was, that’s ok — at least we won’t need a new van this time.




A Possible Diagnosis?

Yesterday was a great day for Koan.  I stayed home with him in the morning, so he got to play with me and Adrienne until about 8:30 AM.  At that point, I put him in the car for a trip to Iowa City — one his favorite places to go.  By 9:00 AM we were at the U of I Children’s Hospital and there were all sorts of new people for him to flirt with and charm.  By 11:00 AM we were headed back to Cedar Rapids, and when we made the turn into the Prairie campus, he was going crazy with excitement.  We were back to school before lunch.  That’s pretty close to a perfect day for Koan.

The appointment was really interesting for me, too.  Back in early September, we re-engaged with UICH because Koan was having more frequent seizures again.  After some very thoughtful discussion, the care team and I elected to put him back on an anticonvulsant medication.  It seems to have worked really well.  We are not seeing any side-effects and more importantly, we’ve not seen a seizure since we started the medication.  

Also at the September appointment, the neurologist, Dr. Matsumoto, asked if we had Koan tested for Angelman Syndrome, a genetic disorder.  Back in 2008, we had a battery of genetic tests done on Jeri, Koan, and me to see if there was a cause for his delayed development.  All of these tests were inconclusive.  But, Angelman Syndrome often seems to come up with Koan.  People with Angelman Syndrome nearly always have a happy aspect — smiling, laughing, just generally looking very happy.  They have difficulty with mobility and verbal communication and they also will flap their arms occasionally.  In addition, people with AS often love water and can demonstrate problem behaviors (swiping).  These descriptors fit Koan to a “t”. Over the years, we’ve actually had a couple of people approach us when we’ve been out and about and ask us if Koan had Angelman Syndrome.  If you look at the AS site I linked, the pictures of people with AS just “feel like” Koan to me.  However, again, one of the genetic tests we had done in 2008 had ruled out Angelman Syndrome.  But, I’ve always harbored a little doubt about the accuracy of that test. I let Dr. Matsumoto know at the September appointment we did indeed have that test and it was negative.  Her response was, “Are you sure?”  She clearly shared my feelings about AS, but she looked at his chart and confirmed my assertion.  As we ended that appointment, she suggested we meet with the genetic counselor when we followed up in December.

So, yesterday, Koan and I met with a genetic counselor.  It was hilarious.  She talked to Koan and I for about five minutes, then asked, “Are you sure you had the Angelman test?”  Just like Dr. Matsumoto, she confirmed we did.  But, she then went on to say that test we had done back in 2008 was about 90% effective in detecting the genetic markers for AS.  So, she was recommending an updated, more granular test that should definitively tell us if he has this specific disorder or not.  Since the test is rather expensive, we need to wait for pre-approval from insurance before going forward.  I haven’t thought a lot, yet, or even talked to Jeri about what we’ll do if we not approved.  I hope that’s a non-issue and we are approved.  But, if Koan has taught us anything, it’s not to borrow trouble.  However, if we are denied, it will be an interesting choice for us — do we find a way to pay for testing out of pocket or do we just go on, without this knowledge.  

Even if we are pre-approved, I’m finding that I’m a little apprehensive about this process.  As I’ve said before, not having a label for Koan’s diagnosis is the best and worst thing about living with him.  The best comes from hope — hope that he won’t be limited by a concrete determination of his condition — one that will set limits on what he might be able to do.  And, the worst is the uncertainty of not knowing what to expect and not being able to plan.  I know it’s not that black or white.  Even with a named diagnosis, there’s a spectrum of impact and thus expectations. So, it’s not like an AS diagnosis locks him into a certain set of limitations.  But, part of me has, frankly, gotten used to not knowing and that’s the more comfortable state.  

If it does turn out the Koan has Angelman Syndrome, the really good news is that because AS is closely linked to autism disorder there’s lots of research in progress on treatment and mitigation of symptoms.  That’s pretty awesome.  There’s also the allure of community — support groups and organizations targeted to helping people and families impacted by Angelman Syndrome.  That would be pretty great, too.  So, we are now entering a new “wait and see” period.  First, we need to get approval from insurance to pay for the test.  Then, the test will take 4-6 weeks to process.  Stay tuned…

An (a)Typical Morning

Last Monday was a wild morning.  I’m sure that all families have these types mornings like this, but having Koan around always make it a bit more interesting.  On a typical day, Jeri is an early riser and is usually out the door before 6:15 AM.  I get up around 6:00 AM and our awesome respite worker, Adrienne, arrives at 6:30 AM.  On most mornings, I’m heading out to get breakfast about the time Adrienne arrives.  On a normal day, Koan hears Adrienne come in (Jeri unlocks the front door before she leaves) and will let her know if he wants to get up by shrieking with excitement.  Koan’s room is our former office/study located right by the front door.  We moved him from his upstairs bedroom a couple of years ago.  Carrying him up and down the stairs is a major chore.  The current room is far from ideal, but it’s the only feasible space on the main level of our home.  It has two French doors.  Sometimes Koan will even be out of bed waiting for Adrienne and will rattle the doors when he hears her arrive.

I can’t imagine what life would be like without morning respite.  It’s just one of the many amazing services the Arc provides my family.  Adrienne is with us a couple of hours each day — from 6:30 AM to 8:30 AM.  The Arc pays for the first hour of respite and we pay her for the last hour which is more like child care. This is really cool on many levels.  It gives us affordable and safe in-home childcare. Without the Arc coordinating with us on this, it would be so much harder — perhaps even impossible.  This arrangement gives Jeri and I the room to have Koan’s care not interrupt or impact our professional lives.  Without this type of service, it would be hard for both of us to work.  

On this particular day, Jeri got off to a little later start.  This had a cascading effect so that I also had to wait (got to sleep longer…) for her to finish up in our master bath.  By the time I was dressed and ready for breakfast, it was about 6:45 AM.  Jeri had left just after Adrienne had arrived.  Koan was changed, dressed, and his bedding changed.  Most nights, unfortunately, Koan’s briefs (diapers) don’t contain all of his output so many mornings he needs a new sheet and blanket.  Again, Adrienne is really awesome — she takes care of all of that! On this morning, Koan was already scooting from his room to our great room — which opens into the kitchen.  As with nearly all mornings, he gave me a big smile and a giggle as he saw me.  I’m not a morning person, but saying “good morning” to Koan is almost always a bright spot.  As I’ve said before, he’s so genuinely excited and happy most of the time, it’s a contagious feeling and a great way to start each day.

I went about making my breakfast — a bowl of cereal — doing my best not to make any “clanking” sounds that would be upsetting to Koan.  Adrienne was working to get Koan’s meal ready, too.  He had a cup of infant cereal mixed with three containers Yoplait yogurt.  Koan is such a creature of habit.  He will scoot out of his room every morning, but as much as he loves breakfast, he will almost never travel to the kitchen.  As soon as he can see his feeding chair in the kitchen, he stops.  He knows that we’ll pick him up and carry or walk him the rest of the way to the chair.  I think if we really worked on this, we could modify this behavior, but he’s really stubborn and it’s just not that pressing of an issue yet.

Koan and I finished our breakfast about that same time and I began to get ready to leave for work.  As I was heading out the door, I realized that my keys (both for my car and school) were not in my coat pocket as I expected.  They weren’t on the counter where I usually leave them.  After about ten minutes of frantic searching, I broke down and called Jeri.  It was about 7:00 AM.  She didn’t have kids coming in yet, but they would start arriving and need supervision within 20 minutes.  Luckily she answered her cell — not a sure thing that time of day — and I asked if she had seen my keys.  After initially saying, “No”, she checked her own pockets and discovered that she had inexplicably taken my keys as well as her own.  She was apologetic. I was frustrated.  I knew there was no way for her to come back or even somehow meet halfway.  If I wanted my keys, I would need to travel the fifteen minutes to and from (about 30 minutes round trip) Franklin Middle School. I live within a mile of my workplace, so my commute is less than five minutes.  This realization added to my frustration.  I was already behind where I wanted to be in my morning and adding 30 minutes to that was making me less and less happy.  

I called into the basement to wake up my oldest son, Tiber who is 16 and has a car.  He does not usually get up until about 7:45 AM.  So, I get to spread my unhappiness to him as I let him know that he needed to wake up and drive me to work.  After much grumbling, we headed out. As the door closed, I hear Koan erupt — this is not routine behavior and he is sure he’s missing out on something and being left behind — not cool!

Once I arrived at work, I put out the normal Monday morning fires.  I decided that I did want my car for the day, so I asked one of my techs, Chris, to drive me to Franklin to get my keys. Chris graciously agreed to help and we headed over to Franklin.  When we arrived there, I texted Jeri and she met me at the door.  I could tell that her morning was also off to a great start as she asked if we had room to take a few of her 6th graders with us back to Prairie.  Chris and I were nearly back  — on Kirkwood Boulevard, just seconds away from the office — when my cell rang.  

It was Tiber.  He was speaking fast and I couldn’t  understand him.  I finally got the keyword from him — “Convaid”.  Koan’s Convaid is his wheelchair that we use to move him to, around, and from school.  It’s essential.  He must have it to function.  I also realized that Jeri and I had taken Koan to the mall last weekend to shop.  We had put the Convaid in Jeri’s van and it was still there — back at Franklin.  So, I had Chris drop me at my house.  It was about 8:30 AM and Koan’s bus would be arriving in seconds.  I told Adrienne to wait for the bus and let them know that I’ll be dropping Koan off at school myself.  I grabbed Koan — who was already in his coat — snagged his backpack and the two “anti-tippers” we need to put on Koan’s Convaid for school.  We remove these when we travel as one of us always has a hand on the Convaid and they make it hard to collapse the Convaid.  But, at school, they need them as he is sometimes left on his own and he might tip over.  Koan is like Tigger — he likes to bounce!  And, even with the tippers, he can really move the Convaid.  This is an issue we will have to deal with in the not too distant future.

As I put Koan in my car, he was ebullient.  To quote my friend Buddy Berry, he was both surprised and delighted — he has realized that he gets to do something special, better than an ordinary day. He was dancing all over the place, making it a real challenge to load him and secure him into the backseat of my Civic.   After I retrieved and cleaned my glasses (he had knocked them from my face), I threw the rest of the gear in the car and head out.  But, I soon realized that I’m nearly out of gas.  Like everyone, Koan has his own idiosyncrasies.  One of these is that he has an active, personal dislike for the Kum and Go convenience store near our neighborhood.  This has been true for years and has been the topic of many discussions.  No one knows why he hates that place.  We’ve all learned to avoid it when he’s in the car if possible.  However, there’s no choice now.  As happy as he was to leave in the car with me, he gives me several shrieks of outrage when he sees me pull into the left turn lane to enter Kum and Go.  

After I fill up the tank and sing a few verses of Wheels on Bus (I’m sure the other morning commuters could hear me…), we hit the road for Franklin, yet again.  The rest of the trip there is uneventful.  Koan is, again, thrilled to be on the road.  I retrieved the Convaid from the van and squeeze it into the trunk of the Civic — a tight fit.  As we head back on Kirkwood Boulevard, there’s a point where we can turn to head back into our neighborhood.  I happened to glance back at Koan as we passed this corner.  As we went by, his face lit up and he screeched with joy.  He realized we were not going back home, but somewhere else.  As we went through the roundabout at the south edge of the Prairie campus, he started rocking back and forth, shaking the car — we are going to school — his favorite place!

By the time I get parked in the handicapped accessible spot in the Prairie Ridge lot, there’s a full-on dance party in the backseat.  I extricate the Convaid from the trunk, expand it, affix the tippers, and hang his backpack on the handle.  I then began the non-trivial task of getting a “dancing Koan” out of the back seat of an economy sedan.  We rolled in the door a little before 9:00 AM — just about the time elementary classes begin.  As I came into his classroom, he was enthusiastically greeted by the paraprofessionals in the room and the other kids.  His teacher, Stacy (who is also awesome!) says, “Did he get the stomach bug that everyone else in the class got this weekend?”  So, I guess we might we have that to look forward to later this week.  As you might expect, when Koan gets sick no one in our house is happy.  But, that’s a story for another day…

Strangers to Ourselves

We all change, shift, and grow as people over the course of our lives.  I recently read a summary of a longitudinal study of personality — monitoring the same group of subjects over sixty years.  This study found that a person’s personality and indeed identity shift so much over time (the study followed people from ages 14 to 77) that at seventy-seven year old, one’s personality looks so different from the fourteen-year-old’s perspective that the changes would render the person unrecognizable. We are all strangers to ourselves given enough time… Having a disabled person in your life accelerates this process.

By December of 2008, Koan was about 15 months old.  We knew with some certainty that Koan was going to face some really significant challenges that we had no experience on how to manage his condition.  But, much like the proverbial frog in the boiling pot (he doesn’t jump out because the heat increases so incrementally), these changes were not shocking or revelatory.  The process was so gradual that we just felt like it was just our new normal.  And, yet over these few months, Jeri and I had rethought and changed our beliefs about so many things.  I know by the end of that year, I was already a very different person. 

Looking back, 2008 was a wild year with Koan.  This was the year when we had to come to terms with the “why” question.  We spend so much energy trying to figure out why he had seizures.  This was a really reasonable approach.  Our thinking was that if we knew the “why”, we would have a better, more targeted (and hopefully, successful) treatment plan.  So, we looked into all types of possible different diagnoses.  He had two EEGs that year.  That’s the main test for epilepsy.  Each of these were really interesting…  While Koan was not very mobile, he still did not cooperate with the process of gluing twenty or thirty receptor-patches all over his head.  He also would not lay still on command as required for portions of the test.  Not surprisingly, the results of both tests were ambiguous.  He underwent a large battery of genetic testing, too.  All the tests came back with negative or inconclusive results.  By the end of the year, we knew we had a disabled child, but no idea why or what to expect.  After all the tests, it became clear to me that the why really didn’t matter — since he did not have a clear-cut diagnosis, there was no prognosis or standard mitigation/treatment plan.  We just knew at the end of that year, we had a kid that we needed to love and somehow set the stage to keep him moving forward — even with just small steps.

That being said, it was still a really painful and difficult process to live through.  To qualify for the Iowa Medicaid ID (Intellectual Disabilities) Waiver, we needed to have Koan psychologically evaluated for development.   Jeri and I chose to do this at the University of Iowa’s Center for Development and Disability.  The staff and psychologists there were great — very caring and compassionate.  But, there’s no denying it’s very tough to sit with someone for 90 minutes answer question after question about what your child cannot do.  Even though I thought I was ready, seeing the written report — Koan was chronologically 14 months old, but developmentally performing at 3-4 months — was devastating.  That document codified his condition.  It was real.

I look back now upon what I thought and how I acted when raising my older two kids, Sydney and Tiber.  I spent a lot of time worrying about them.  I know this is normal and natural.  But, from where I’m at now, it seems like such a waste of energy.  Sydney didn’t crawl and walked late — about thirteen or fourteen months.  Since she was our first child, these weeks seemed to draw out very slowly.  But, of course, she did eventually walk.  And, now, no one looks at here and thinks –”Oh… I bet she walked later than other kids…”

Tiber was bit more of a challenge.  He still has some issues expressing himself verbally.  Speech therapy has been really helpful for him.  Tiber also needed some help with attention (medication) when he was in elementary school.  But, like his sister, he’s very, very bright.  The problems Jeri and worked through with Syd and Tiber did demand our attention and focus.  But, looking back the emotional investment I made in these issues was disproportionate to their intensity or importance.  I think about that a lot going forward.  It’s not like Sydney and Tiber don’t have problems crop up.  Some of these are quite serious and demand a lot of attention.  But, my filter for what we get really worried about is now (and I think forever) changed.

I’ve written a lot about perspective shifts.  Having Koan in our lives has made me more present and grounded.  He’s changed my thoughts about disabled people, their value, and what we need to do as a society both morally and ethically to support them.  But, probably more so than anything else, having Koan in my life has given me a deep and perpetual understanding of what really matters.  I think the old saying goes something like this, “The key to life is not to sweat the small stuff.  And, everything is small stuff…”  I’m not suggesting that I don’t spend time and energy on worry.  I wish I could say this was true.  But, the minimum threshold of what I worry about is really different.  I spend (or at least really try) more time being grateful what’s going well than worrying about all of the things that can and have gone wrong.

Koan’s Story: Unwelcome Advice

A couple of months back, there was a silly Facebook test that came across my timeline.  It asked you to identify an ambiguous color and depending on your response (supposedly), it would tell you your base disposition (optimist, pessimist, etc…).  I don’t normally take that kind of click bait, but I bit this time.  It was an interesting question and the quiz didn’t take much time. My response came back as an optimist.  I didn’t find that surprising.  I see myself that way.  I shared this finding with Jeri and several friends at a social gathering.  They all smiled, shook their heads, and said, “No.  That’s not you.  You’re a realist.”  After a lengthy debate, we all agreed that I’m not blindly optimistic.  I’ll admit, I don’t instantly look for the positives when I’ve been dealt a reverse.  I can even be very negative in the short term.  But, I always find a way to eventually find the good in just about any situation.  I don’t like the realist label.  Like the pessimist label, that implies victim thinking — a resignation of one’s self to the situation.  I hate to do this, but I’m going to quote Richard Bach — no not Jonathan Livingston Seagull — worse!  Illusions.  I’m embarrassed to admit I’ve read both.   But, I do believe truth is truth.  In that book, Bach wrote something to the effect that, “all problems come bearing gifts in their hands.”  I really believe this.  Sometimes, it just takes me a while to see the gift and embrace it.

The winter of 2008 was not a lot easier than the fall of 2007.  But, it was a different kind of difficult.  From the time Koan first went into the hospital in mid-September until the time he was last hospitalized in November, Jeri and were not really thinking about big picture stuff.  Those three months in the fall were a shock to the system.  We were just looking to get through each day as it came — pure survival mode.  It was Maslow’s Hierarchy of Needs sort of deal.  Jeri and I were so preoccupied with the seizures, that we could not think about what all of this might mean down the road.

But, by January of 2008, the seizures had stopped.  While we still worried about them coming back,  we soon found ourselves settling into a routine.  All of the doctors and specialist had no idea if Koan would go on a normal developmental trajectory or if he would experience delays.  Nearly all of them said the same thing, “You’ll know when he’s about a year old…”  So, these next few months were pretty tough.  We hoped for the best and starting thinking about bad scenarios.  We obsessed over everything he did or did not do.  As these weeks began to stretch into months, I started to reflect on a couple of pieces of advice we got while Koan was in the NICU.  

During our time in the NICU, Deb Streff came up to see us frequently.  Jeri and Deb taught together for several years. She and her husband Steve have an adult child with disabilities, JR.  Deb knew early on what was going to happen with Koan — long before either Jeri or I wanted to admit it to ourselves.  On one visit she said something that I’ve reflected on many times since.  She said, “It’s going to be ok. Take some time to grieve for the child you thought you were going to have.  Then love the child you have.”  

Before Jeri worked with Deb, I knew of the Streffs and their family.  Steve taught at the high school I attended.  And, a close friend of mine when I was growing up, Scott Emerson, would periodically babysit for the Streffs (his parents knew the Streffs socially).  So, I would hear bits and pieces about his time with JR.  When I was younger, I didn’t know any disabled people.  JR Streff was the only disabled person I really knew about.  I remember thinking how different and difficult it must be in the Streff house – – caring for someone who moved so slowly and had such a limited vocabulary.  I couldn’t imagine living with or taking care of someone like that.  It seemed like such a burden.

So, Deb intimated that Koan was disabled (in my mind like JR) less than a month after he was born, I wanted nothing of it.  I didn’t get angry, but I did not want to have that type of conversation.  I felt like we knew so little about Koan.  I also mistakenly thought that if I openly acknowledged the possibility of a disability, I was setting lower expectations for him.  Of course, I look back on it now and I realize how high-functioning JR really is.  He’s mobile, he can communicate verbally.  He can do so many more things independently than Koan can.  Envious isn’t the right word, but I want what he can do for Koan.  This is just a concrete example of how much my perspective has changed since Koan came into our lives.

Deb’s advice, even though I did not want to hear it at the time, was so wise and profound.  Once we got out of survival mode, I did reflect on her words and found the meaning in them.  I’m so thankful now that she was brave and said that to us then. It was natural and inevitable that we would feel loss and sadness at that time.  But, it was so important to unconditionally love Koan for who he was, too.   I still reflect her words to this day.  Occasionally, I still have some sad moments.   Sometimes I look out the window and see children in our neighborhood riding bikes, playing baseball, or jumping around on a swing set — all things Koan can’t do right now.  I wonder what might have been.  But, I tell myself, it’s ok to be sad sometimes.  The trade offs we get for Koan as he is are pretty awesome.  

As I was returning to work after Koan was discharged from the NICU, I got some other words of wisdom from one of my co-works, Charlie Braun.  Charlie was my first hire at Prairie.  He’s a really interesting and eclectic person — a mix of technical/analytical and artistic/holistic: industry certified computer technician, painter, musician, etc…  Before Charlie worked at Prairie, he had spent time with the ARC as a respite worker.  And, as he was growing up his family cared for several foster children — many with disabilities.  So, he had a lot of experience with disabled people. As I was settling back into my work routine, I was relating to Charlie the worries I had about Koan.  At that time, I didn’t know how disabled he would be, but I had a pretty good idea that we were going to see some types of delays.  

In one of these conversations, Charlie said something that, again, I did not like or want to hear.  But, it was deeply insightful.  He said, “You are going to grow to love his disabilities.”  What he meant by that was pretty simple — these differences will define who he is and will be overt characteristics that we would (eventually) find endearing rather than burdensome.  At the time, I could not possibly imagine loving something that was going to set my child apart and make his life more difficult.  That seemed like accepting a lower standard for him or a lowering of expectations.  I tried to reject the idea. But, of course, Charlie was totally right.  It’s impossible to not love all of Koan.

The little foibles and idiosyncrasies make him who he is.   I fervently wish that Koan had more skills that would make him more independent — walking, talking, feeding, etc…  I love the way he tells us stories with no words, but lots of sounds –his squeals of delight, his shouts of outrage when he doesn’t get what he wants… The way he raises his arms above his head and shakes them when he’s happy and excited — think Kermit the Frog for this.   I also know, having raised another “developmentally on-target” boy, that he would not smile nearly as much at 10 years old.   And, again, while I certainly want more for him, I do so love all of these little traits that make him special.  As I’ve said many times before, I would not wish his condition on anyone, but I would not trade him or change him.

He’s Really Cute, Most of the Time…

Koan loves water.  He loves the feel of it.  He loves being covered in it.  He looks for any opportunity to spill and splash water.  Baths are a favorite activity.  Sydney and Tiber hated having their hair washed when they were little.  Koan can’t get enough.  If there’s open water in the house Koan will find it and make a real mess once he does.  It’s one of the great joys of his life.  As you might imagine, we’ve had to modify our collective habits and routines to account for his aqua-philia.  The cats’ water container is located downstairs now.  We never leave a glass (or any container) of liquid anywhere near the floor.  And, both toilets on the main level are always to be left with lid down or bathroom door shut.  

On August first, I was scheduled to out of the office for the afternoon for a doctor’s appointment.  I was having some minor surgery — removal of a mole and cyst from my back.  I left the office early to have this done.  I had arrived at work that day to find a new note on a support case I had started the previous week with our student information system provider, Infinite Campus.  The note indicated that I need to call them to discuss the ticket.  The issue I had reported was rather minor, so this seemed odd.  When I got the tech assigned to the ticket on the phone, his first words to me were, “Let me get my manager…”  I knew this was going to be an interesting day.

It turns out, an automated database cleanup process had quit running several days before on the Campus server.  This missing cleanup had let some corruption seep into our student database.  Registration was scheduled to start on August second, the next day.  So, this was terrible timing and pretty troubling news.  Over the course of the morning, the Campus hosting team and I worked out a plan that we believed would remove the corrupted data and have us ready to register 5,000+ kids the following day. They were going to do a partial restore to the last known good database from the previous Wednesday and manually massage the data we had added since then back into the database.  The restore was going to take a couple of hours and the Campus would be unavailable for use during that time.  So, we scheduled the outage from 11:00 AM to 1:00 PM.  This worked out well for me because this would mean that Campus would be back online by before I had to leave for my doctor’s appointment at 2:00 PM.

Campus was still offline at 1:30 when I needed to leave the office in order to give myself enough time to get checked in at the doctor’s office.  I wasn’t particularly worried.  I trusted the Campus support team and my local team was checking and would text me when it was back up.  When I came out of the procedure, I checked my phone.  And, sure enough, there was a text from Chris Ketchum letting me know Campus was back.  So, I left the doctor’s office and headed to Target to get my follow-up prescriptions filled and to get some bigger band aids.  While I was waiting at Target, I started getting emails from our secretarial staff indicating that Campus is not working.  I couldn’t replicate the problem on my phone, but I believed there was a problem.  So, I hustled home.

The reason I went home and not to the office was two-fold.  There wasn’t much that I couldn’t do at home that I could do at the office for this type of problem.  And, most of the impacted personnel, the secretaries, had already left for the day since it was already past 5:00 PM.  Secondly, Tiber had been watching Koan all day.  Jeri had spent the day in her classroom and was going out with some work friends for a “girls night out” that evening.  Sydney was also out with her friends.  So, Tiber had been solo caring for Koan all day, and I figured he needed a break.

I got home; replicated the problems reported in the emails, and started a call to Campus Hosting Support.  There were several calls over the next few hours.  I was talking on speaker phone to the support manager while feeding Koan.  There were more calls after that.  Tiber retreated to his man-cave in our basement.  Koan and I were on the main floor.  Things were not going well with the support call.  I was beginning to feel a creeping sense of panic as I considered the possibility that Campus may not be available for registration.  Like many people, when I’m nervous and worried, I pace.  I stationed Koan in our great room and I walked a circuitous route from the great room (to check on Koan), to our master bedroom (quieter) and into our master bath (quietest) as I talked to the increasingly apologetic Campus support manager.  Koan was babbling away — singing his nonsensical songs the whole time.  But, he was quite good and entertained himself.  I didn’t need to change a diaper or have our Amazon Echo play “Wheels on the Bus” — Koan’s ultimate calm-down song.

Around 7:30 PM, it was clear there’s only one viable path forward —  a full restore of the database from the previous Wednesday.  This meant that nearly a week’s worth of work would be lost.  It was a lonely few minutes as I weighed the decision in our master bedroom.  But, there was really the only sensible call — do the restore.  So, I gave the go ahead to do that.  Almost at that same time, Tiber emerged from the basement.  Earlier in the summer, I bought Tiber an inexpensive electric guitar and amp as a reward for all of the time he’d spent caring for Koan.  He’d found my old Cry Baby wah-wah pedal and wanted to use it.  But, it needed a new 9-volt battery.  So, he told me that he wanted to go to the store to pick up a battery.  This would be his first time as a solo driver.  I agreed to his plan.  I wanted to encourage his independence, and I secretly wanted to play his new guitar with the Cry Baby myself.

As Tiber left, I headed upstairs to my office to write a very sensitive and delicate email to everyone who might be impacted by the data loss we were going to experience in Campus.  Koan was sitting by our front door and the doorway to his room.  He was playing somewhat quietly but very happily.  I became engrossed in the composition process.  I created several drafts.  I looked at each word to be sure that I did a good job of explaining the situation without being too technical while making it very clear there really was only one option to address the problem.  As I finished up the final draft, I realized the house is very, very quiet — too quiet.  Just at that same moment, Tiber got home.

I gave the email one last read.  I heard Tiber downstairs tromping through the kitchen.  A second later, I hit “send.”   Tiber called upstairs — “Hey!  I think you need to come down here!”  I realized with dread that when I was pacing earlier, I made a cardinal mistake in our household.  I had left not only the door to my bedroom open, but the door to the master bath, and almost certainly the toilet seat was up, too.  It was the same sinking feeling that every parent of young children has when the house goes too quiet.  

I bolted down the stairs, through our great room, through my master bedroom, and into the master bath.  Koan was sitting in front of the toilet.  The lid was up.  Keep in mind that Koan will not feed himself.  Notice I use the words “will not” and not the words “can not.”  He loves food, but he will not consistently move food from his feeding tray to his mouth.  However, in the time that I was upstairs writing my email, he had found to his delight that the bedroom and bathroom doors were open and even better, the toilet seat was up — a celebration ensued.  He managed to spool an entire roll of toilet paper into the toilet.  Again, a pretty complicated task for a guy who will not feed himself.  Then, using his open palm, he splashed (exploded really) the contents of the toilet all over himself and the entire bathroom.  He looked like a very happy and proud snowman — covered in goopy white bits of toilet paper and soaking wet — head to toe.  Worse yet, there were wet pieces of toilet paper all over the bathroom.  It looked like a toilet paper bomb had detonated in the space.

I’ll be honest, this was not my finest moment as a parent.  Koan was smiling, delighted with himself, proud.  He had had a wonderful time!  I strode into the room and closed the toilet cover.  That did not meet with Koan’s approval.   The look on is his face said it all — that was an act of betrayal and complete meanness.  I had taken his fun away and he was going to make me pay for that.   He began to wail.  I gave a howl of exasperation myself.  That made Koan cry louder.  I picked him up and hustled him into our bedroom.  I set him on the floor next to the bed.  I could feel the stitches in my back straining, nearly popping as I lifted him. I felt like crying along with him.   I called for Tiber (who was laughing) to get me a broom. He headed out the door, sniggering all the way.  After returning with the broom, Tiber got a good look at me and wisely decided to stay clear of both of Koan and me for a few minutes.

In retrospect, I wish I had taken a couple of pictures of Koan’s state and the scene of the crime.  But, I was just too flustered given my physical and mental states.  As I worked to clear the floor so I can give Koan a bath, I can hear him howling in outrage in the master bedroom.  I called Tiber back as I was completing the rough clean up.  I need him to take away the broom.   He called to me as he came back into the master bedroom.  I could not hear what he said over Koan’s screams.   In his rage, Koan had cried himself into a bloody nose.  So, he was now covered in gooey toilet paper, snot, and blood — a real treat for the eyes.

Once the bath water started rolling into the tub, Koan’s screams of anger turned to squeals of delight.  I was well aware that in Koan’s mind this was even better than splashing wet toilet paper — a bath!  The last thing I wanted to do was reward his behavior.  But, there was just no other choice.  Of course, the ultimate irony was that none of this would have happened if a so called “clean up” routine had not failed on the Campus server.  

Jeri got home around 10:30 that night.  I was already in bed.  “How were things here?” She asked as she passed through our bedroom into the bathroom.  “Nothing new here.”  I was too tired to explain what happened.  I figured the full story could wait until morning.