"'Cause there are stars up above

We can start moving forward.

Lost in my mind.
Lost in my mind."
Lost in my Mind by Head and Heart

Easy to get lost in my mind as Porter went home a month ago.  William has been exceptional Dad having all three boys to manage.  It has been decades since I have experienced this degree of independence and reflection.  I am prone to ponder the ways in which we will move forward as a family.  As many other families, we are in transition.  Frazer and I will hopefully return home in two weeks; Houlder and Dell will leave for their respective schools in a few weeks; I will need a school for Frazer; and I will homeschool Porter.  
 
Swimming in planning.  

What it will look like when when we head home the first week in August?  Will we stay in our house or move to the county?  We will need to apply for SSI and school options for Frazer.  An IEP (individualized educational plan)?  City or County?  Fairfax or Montgomery Counties?  Affording a private specialty school for Frazer?  Leave the East Coast?   

NIH which has been a wonderful limbo.  There have been answers which have led to more and more questions.  Frazer lives an examined life pleasantly chatting with all inquisitors.  I have sought resources and ideas to best continue to help him. 

Frazer does not have Childhood Onset Schizophrenia. 

Good news.  But news that I hesitate to celebrate knowing the kids who have this disorder suffer mightily.  We dodged this diagnosis and landed another one.

Frazer has Complex Partial Seizures which are on the epilepsy continuum.  They are moments or few minutes in which Frazer’s spaces out — not grand mal seizures.  He loses track of anything that happens during that time.  Seizures occur in more than one part of the brain and can be the cause of the voices and hallucinations he has been having.  He has now been on the anti-seizure medication for two weeks and reports feeling different.  He appears more present.  He also reports hearing and seeing less voices.  He remains happy, engaged and fun.  Here is an explanation.

With Porter’s departure, I have been able to spend significantly more time with Frazer.  He has attended late afternoon camp at the INN which has involved crafts and games to theater performances.  He has had fun.  It has been nice to visit with him on the weekends, and we have been cooking and playing ping pong.  Neither of us are skillful at ping pong. 

Frazer does not have this genetic syndrome they were testing.  I am not sure that the doctors were disappointed by this but they seemed surprised.  We found he does have a bilirubin issue, called Gilbert Syndrome, which will only effect him should he ever need chemo.  His GI issues are improving tremendously.   We are waiting for some immunology test results but those should net nothing other than re-immunizing for Hepatitis B. 
 
Our plans, what we will do, involve many moving pieces.  For now, we celebrate a miss and begin to understand how to proceed with these seizures.  

We are hopeful for Frazer’s life.

The Update on Frazer, Star Date June 25th, 2014

The Fraz Man.  A well-loved boy if ever there was, there was because what's not to love.

Here we are five and a half weeks into our time at NIH with Frazer in the study on COS.  One-third of patients in study end up not having COS diagnosis.  Frazer remains clinically "undiagonosed," not showing signs of psychosis.  The doctor is extending his wash out phase -- the period without meds -- another two weeks because two and a half weeks into this wash-out they are noticing some odd behaviors.


There are some complications.  What's new?

Genetically:
The team is testing for two specific genetic syndromes which may account for some of Frazer's behavior and other physical issues.  Of course one of these syndromes has only 50 known cases in the world.  Pretty "rare."  However, at NIH, we have met people who are the only two known cases of a genetic syndrome.  As Porter said after learning this, "I guess 51 is not a big deal."  Results of these are about 4 plus weeks out.  Should he have one of these specific syndromes which would include hallucinating and hearing voices, Frazer then would no longer be in the COS study long term.  That does not mean NIH kicks us to curb without a solution.  And finding meds could take 4-6 weeks.  But, it means his condition does not fall under the psychiatric label even though some symptoms fall there.

Liver:
NIH likes blood.  Blood draws are frequent and after several weeks of liver numbers being off, it was time to call in a pediatric hepatologist.  She was great.  Apparently one issue is that he has received his Hep B vaccine but his blood shows no titers for that.  Of course of numbers can mean Hepatitis and a few other things.  More blood draws, waiting for more tests.  And now a call to immunology to figure out about titers.

Neurology:
A routine EEG showed electrical activity that is suggestive of Epileptiform Encephalpathies.  He had a 24 video-monitored one, and they are still digesting that data.  What this means is unclear at this point.  It could account for certain things, be ancillary information or develop into something.  Previous EEGs dating back to his infancy showed normal activity.  The 24 hour one was done without meds on board and after two weeks of wash out.  It is fair to assume he did not have meds interfering during EEG.  Neurologist is also geneticist.  She observed and found some of same  neurologocial oddities as specialist at Mayo.  Together, with other things, led to genetic testing.  Neurology is not finished with him.  He will have a 12 hour sleep study Friday night.  He gets to move to the sleep hall, but one of his nurses travels with him.

GI
Well, the GI specialist is helping with some life-long challenges Frazer has had and we have not had any progress with since he was a toddler.  She is retesting for celiac's and some other things as well.  We hope to leave with a plan here too.

Psychiatry:
Frazer is not presenting with psychosis at this point.  Voices and hallucinations are not being questioned.  There is something called prodromal schizophrenia.  Frazer may have this.  Medication would be needed for that.  It is similar but does not clinically meet COS.  There is a study for that as well but should he have a genetic syndrome, the symptoms fall under that category.

He may have a psychiatric disorder the has elements of several different disorders making his diagnosis multidimensional not singular.

These area is gray and unclear, and treatment is still important.

Anti-seizure medicine can be anti-psychotic medicine. 

The tangled web Frazer weaves.  He is still happy on his hall.  He still goes to school three hours a day (there are four kids in group and 1 teacher: 2 students).  He loves having his kindle for an hour every night and has watched Frozen every day since he has been here.  We visit daily and try to read with Porter for an hour but often they just watch a movie together.  Playing games is difficult as many of his behaviors are unkind.  He is definitely more aggressive with me and his main nurse.  It is something.

William and I are grateful.  He is getting thorough care and the folks who interact with him truly enjoy him.  He has rec therapy, art therapy, pet therapy, exercise, and school.  He picks his own food off menu -- pasta and mac and cheese every night.  Not saying it is good but he wants it.

We are on the course until the train gets us off at a station in which he can move forward at home with a plan -- a five year and possibly a ten year one.

Annapolis -- Amazing Grace

State Capital of Maryland, home the Naval Academy, and a sailor's gateway to the Chesapeake Bay, Porter and I recently spent a Saturday in Annapolis invited by some Richmond friends.  Porter and I had a wicked good time with our friends, the Cantrell's,  who shined a spotlight on fun and brought a a great deal of happiness to Porter.

Caley's dad is a retired Rear Admiral and a delight at 86.  Admiral Shaffer touched my heart as he engaged with Porter and shared his knowledge and nautical antiques with Porter.  Of great interest was a antique flare gun.  Admiral Shaffer took us over to the "yard" where we watched a recruiting video for the The Naval Academy.  Porter was not ready to sign up, but it captured his attention.

Afterwards we headed to LeJeune Hall to watch some swimming.  Georgia was finishing up a week of Navy swim camp.  Porter and I watched swimming which I am used to doing but Porter rarely sits in the bleachers of a swim meet anymore.  He behaved well enough while we watched the swim camp finish up with a swim meet between the Blue and the Gold.

We had a tour quick tour Bancroft Hall and had lunch there before heading the gift shop.  Bling, bling, bling!  Caley spoiled Porter by getting him a Navy swimming tee shirt.  His mom caved and got him a Navy pillow pet which Frazer has.

Next up was the Naval History Museum, Preble Hall.  Wow!  Pretty thorough history of our country's early days as naval warfare became a part of our way of life and the artifacts really interested Porter.  He particularly enjoyed the swords and weapons.  Admiral Shaffer demonstrated such kindness as he shared stories with me and wisely understood that Porter would look at what he liked -- not listening unless piqued.  I appreciated Admiral Shaffer's sensitivity.  He was a gentle soul reminding me of my late maternal grandfather, The Hon. William Bruce Evans, who was a Lieutenant Commander in the Pacific during WWII.  The second floor of the museum is filled with incredible deck/yard models of ships which were built concurrent to the ship being built.  There was an entire section devoted to prisoners of war who designed and constructed, from memory, models made from scrap food bones.  It was truly remarkable. We finished our time with a driving tour of the yard.

Afterwards, we headed to Admiral Shaffer's where Caley and I relaxed looking out onto the bay while Sean took Porter on an excursion.  Bottle rockets and quad copter -- Sean spoiled Porter rotten and they both loved every minute.  Sean is one of those friends who steps up.  He has given Dell summer employment and is teaching him a ton about commitment, hard work and recycling.  His kindness to Porter turned this summer around for the little guy.  That quad copter has become Porter's way to share with other kids at the Inn as well as show off.  The huge two story atrium has had many adults stop and admire his flying abilities.

Admiral Shaffer took us all to dinner as well as Caley's brother Doug and his daughter Genvieve.  More fun, great food, and feeling welcome, Porter and I relaxed.

As we headed back to Bethesda, Porter and I reflected on the love the Cantrell's and Shaffer's shared with us.  We felt a greater sense of longing for our family.  It was a longing based on knowing family and love, not of isolation.  We had a chance to bear witness the banal parts of everyday life that combined with the whole and with kindness can really make things better.  Our gratitude lingers.

So many people have reached out to us as we manage our time apart.  It is an odd existence.  I went from managing three kids daily and one remotely to managing only one kid daily and two remotely and one I can visit.  A chance to be in the midst of family, to be generously treated to laughter and fun is an act of grace.  I think it is easy for kids to experience grace -- Porter was not conflicted about Sean's and Caley's gifts.  I had to mentally let go and be in that moment -- of not fighting off kindness.  In many ways, so much feels out of control.  Watching things unfold for Frazer, knowing Houlder and Dell head to school in less than two months, missing our pets, our home -- William -- the natural force of motion rolling ahead.  While Porter and I are in encapsulated in life here, for a day we had grace and I am bringing that with me as much as possible everyday.

COS -- it is not just an algebraic term.

Childhood Onset Schizophrenia. 

The simplest thing to say would be schizophrenia in kids that comes on before age 13. 

What I knew about schizophrenia could be added together fit on the head of a pin and even then it was false. 

From intro psych I had a memory of it developing -- rarely -- mostly in men in their early 20s.  This is false.  Schizophrenia effects 1% of the population and effects men and women equally.  General Information can be found here.

From the fallout of deregulation in the 80s, I knew public mental hospitals/institutions closures had increased the number of homeless people who had schizophrenia.  I believe the fact lies somewhere between true and false.

And, I had learned some where is my research for uncovering what was wrong with Houlder back in 2011, that there were schizophrenic patients who had PANDAS -- not schizophrenia.  Read here.

Most of what I knew about schizophrenia was incorrect or foggy.

I have met a parent whose professor father developed it when she was a child.  I learned a bit more but her descriptions fit most of what I had assumed and learned were false.  Many homeless people need mental health support -- as would I -- if my home were the street.  And, if your child does not test positive for PANS or PANDAS -- maybe the psychosis is real.  Until this time, my life confirmed what I knew about schizophrenia.

I never knew there was schizophrenia that begins in childhood.  COS is rarer than schizophrenia.  1 in about 40,000.  It is not the same for every kid.  Every kid who has imaginary friends does not have schizophrenia.  Quirky individualism is not a path to the nut house.  And, COS may exist with many other labels.

It is not easy to define.  There is not a singular gene sequence.  Meds work with varying degrees of success.  Getting treatment after first psychotic break is best. 

If you want to know the most about COS, read this.

It seems easy to launch into a spiel about the importance of mental health advocacy and the need for more psychiatrists, psychologists, and LCSWs.  It seems easy to seek alternative diagnosis or even embrace the disorder as part of neuro-typical behavior.  The reality is that living with this disorder is case by case as much of health care is.

It may be normal for a person to feel powers that don't exist but if his/her life is in jeopardy because of these actions, should we respond?  I believe yes.

Do I want my child to take psychotropic drugs?  Not really.  No, but if he needs them to be safe, yes.

Do I want him hurt because what he sees as real and what is real is dangerous?  No. 

Do I want him to enjoy life and be allowed to have his own views?  Yes.

Where the safety versus viewpoint intersection lies is hopefully uncovered in time through genetic research.  But, it will not be in enough time to help Frazer now. 

Today.

Today, he finishes off five weeks in-patient.  He is one and half weeks without psychotropic drugs.  He will go on another 1.5 weeks before bigger assessments are done.  Wash the meds out.  Hopefully his expressive language will kick it up a few notches to explain what he sees and hears in better detail.

Do I want Frazer to have his own perspective on life?  Indeed. 

Is COS an easier to manage as a mental disorder than as math?  Definitely not. 

It is easy to go through the looking glass and down the rabbit hole, but that seems pointless.  A few shed tears, but not buckets. 

We are uncovering as much as we can with the minds of those who know more than most.  We  have him safe and frankly happy.  It is odd to know one's child is happy on a psych floor, but it could be worse.  If we need to medicate to ensure his safety, we will.  We have tried myriad of modalities, diets, and medical and non-western approaches since this child was born.

If nothing else, I hope you will consider a kid who is not like yours.  Be kinder, warmer and more open.  Don't be afraid.  Kindness should not take courage but compassion.

"Love and compassion are necessities, not luxuries.  Without them humanity cannot survive."  Dalai Lama

Hey 19

Today's post is dedicated to the gentle giant in our family, Houlder, who turned 19 on May 31st.  He spent his day at the Inn with us visiting Frazer and sharing a very small bed with Porter.  He also graduated from the Collegiate School on Friday, June 6, 2014. 

On May 30th, Will and Houlder drove up to the Inn arriving around 10pm -- just after our return for the Nats game about which I previously posted.  Porter was over the moon showing the off the Inn and chattering endlessly.  After being away from Houlder a couple of weeks, it was easy to notice the man he has become.  From the attachment to his iphone to receive all birthday wishes to his slightly less than enthusiastic responses to Porter, Will and I chatted about how he continues to improve as his "normal" young adult behavior begins to show through.  It is pleasant to see.

Birthday breakfast was made in the community kitchen by Porter with love.  We will leave it there as Houlder gifted Porter by eating a few.

We visited Frazer for a bit and hit the movies to see the new X-man movie.  Eh, but we toured downtown Bethesda, visited famous Georgetown Cupcakes to get some treats, and hit the bookstore for a few "gifts."  More visits with Frazer, dinner, games, the day ended with people hitting the hay by 10pm.  Not typical for 19, but as far I figure, we rarely do typical.

The next morning William and Houlder left early to collect Dell from St. James.  The three men began their man-summer until Porter and I came home the 5th for graduation festivities.

A better weekend could not have been scripted.  Lovely mild, sunny weather allowed for a comfortable and gorgeous day.  Will's parents joined us.  It was just great to see these kids we have watched for 13 years.  And, for us, it was such a special moment.  Two years ago, when we returned from Mayo, we could not allow ourselves to think Houlder would be able to make up lost work and graduate with his class.  Hurrah for him!  No tears at this time as we are tickled and delighted.  It is such a great victory for Houlder's tenacity.

Houlder will spend the remainder of his summer coaching swimming for the Country Club of Virginia -- a Southampton rival.  He has a bench to finish from his senior project which will be in our kitchen when the second one is completed.  He has friends to spend time at the beach.  And, he has Kenyon waiting.  He was delighted to tell me he had received his kenyon.edu email address and update his FB photo to a picture of Middle Path.  It feels like his life is commencing.

William and I are grateful for his persistence and kindness.  It feels like his life is front of him.  Who would have thought two years ago?  Hey 19

Photos are not uploading.  Sorry.

The Nats

Another great gift of the Children's Inn -- club seats at a Nats game Friday, May 30, 2014.  A kind donor had shared awesome seats.  Off Porter and I went after visiting with Frazer.  Porter had his first Metro ride and went to his first major league baseball game.  Peanuts, sodas, fries -- he saw a few homers and the Nats beat the Rangers.  It was a great night capped off by Will and Houlder arriving about an hour after we got back.

Porter's first Metro ride -- little unsure of at first.

View from the club section.

Necklace bling -- made from a baseball.

Attempt of selfie at game.

Beautiful stadium and night.

Capitol

Outside the Capitol waiting to go in.

 The Children's Inn does a wonderful job providing entertainment for the guests -- both children and adults.  They try to find relaxing activities and fun activities in the late afternoons and evenings.  It is pretty great.  On Thursday, May 30, 2014 a group of 19 patients and their families had an opportunity to visit the Nation's Capitol.  It was an exclusive tour as someone had a connection to the Senate Majority Leader's office.  One of the guides has worked at the Capitol giving tours for 7 years, and it was her first time in the Senate Majority leader's office.  It was very cool.  Getting that kind of opportunity is more about patriotism than politics for me.  Our Capitol is beautiful and powerful vibes float through the air. 

Beautiful painted ceilings.

Arches were beautiful.

Reid had portrait of Mark Twain and a letter signed by Samuel Clemens.

Porter sitting in chair directing in front of Reid's desk.

This seal on the ceiling is actually a decal -- peals on and off depending on who is Majority Leader.

Special chandelier that had been in White House.  The globes had an etch shield.

Painted Seal -- not decal.

View outside Reid sitting room -- a less formal room.  Looks like roof top gardens?

Portrait JFK.  I asked and leaders of Senate or House are able to selection from a warehouse and decorate as they choose.

Floors all over Capitol are tiles with paint baked on -- from 1860s.  They are designed to look like rugs.

The Old Senate Chamber.

iphone does not do justice to the vivid colors on the column and ceiling.

Painted ceiling.

Chandelier. 

Lucretia Mott, Elizabeth Cady Stanton, and Susan B. Anthony

Lincoln on the right and I cannot remember....

P man

MLK

Reagan's statue had stone from the Berlin Wall. 

Old Senate Chamber even once held farmer's markets with chickens running around.

Afterwards we checked out Union Station and had a picnic dinner in the food court.  Porter rode the shuttle back  in the back on the bus without me -- hanging out with the college women who are volunteers for the summer.

It was a good day.

Home

Is where I want to be...

Home.  What defines home for each person?  The Taking Head's Naive Medley is an anthem reminding me that the soul is more heart than hearth; the place I abide in communion with those I love and those who love me.

So why not here in Bethesda, Maryland away from my "home?"

Porter misses our summer life -- Southampton, his kitties with whom his Facetimes nightly before he can fall asleep, his friends, his dad but mostly Southampton.  We live all winter awaiting that frigid Monday in May when we plunge in for swim team and our SRA life. This little recreation center provided Houlder the fodder for both his senior speech and his college essay.  It has snuggled its way into the heart of our hearth and we achingly long for the life we have there.  It is like a panacea for all that worries us and overwhelms us.

A good friend religiously collects water from each season freezing it until the next season to drop the previous summer's magic into the new water.  I cried when those photos were posted.

WHAT!

Cause the real deal is that The Children's Inn is spacious and gracious.  Similar to a Ronald McDonald House, the Inn at NIH provides community kitchens, meals, activtities, a teacher, comfortable areas, therapy dog visits, an awesome playground.  The staff is amazingly kind and thoughtful.  In fact we leave shortly for a private tour of the Capitol for guests of the Inn.

Porter and I spend our days here in the Inn doing school work, reading, playing with other kids, cooking, visiting friends nearby, and visiting Frazer.  I also participate in his care management.

Porter has made a great buddy with one of Dell's godmother's sons who lives nearby in Chevy Chase.

There are tons of Kenyon peeps in the area.  I feel support.

Just missing summer.  Trying to embrace the newness of it all and make the transition to our summer home.

One thing that is reassuring is that every day we pass a beautiful monoprint which a good friend, Carlysle Vicenti, had donated:

You can imagine our excitement of seeing this piece the first time.  We even have some acrlyics from this monoprint series.

Home is nearer than we know.

Frazer's home on his wing is a happy existence.  He seems quite content in fact shunning some of our visits which is another source of pain for Porter and me.  He has school, rec therapy, art therapy, about four other kids are on the hall.  He has made his new home fairly easily which is a relief and a heartache.  Porter asked him what he missed about home and he said, "Nothing."  Even Dell missed home when he was at St. James.

But, as this is our home for the next few months, I am confident that Porter and I will find more ways to feel synced to summer; I am glad that Frazer, for now, is at home.

Should you want to send mail:
Susie or Porter Hudgins
C/O The Children's Inn at NIH
7 West Drive
Bethesda, MD 20814-1509

or Frazer can be reached:
Wren Hudgins -- Patient Mail
NIH -- CRC, Hatfield Center
1 SW PCU, MSC 1280
#10 Center Drive
Bethesda MD 20892

We are "Making it up as we go along."

"This Must Be The Place (Naive Melody)"

Home is where I want to be
Pick me up and turn me round
I feel numb - burn with a weak heart
(So I) guess I must be having fun
The less we say about it the better
Make it up as we go along
Feet on the ground
Head in the sky
It's ok I know nothing's wrong . . nothing

Hi yo I got plenty of time
Hi yo you got light in your eyes
And you're standing here beside me
I love the passing of time
Never for money
Always for love
Cover up say goodnight . . . say goodnight

Home - is where I want to be
But I guess I'm already there
I come home she lifted up her wings
Guess that this must be the place
I can't tell one from another
Did I find you, or you find me?
There was a time Before we were born
If someone asks, this where I'll be . . . where I'll be

Hi yo We drift in and out
Hi yo sing into my mouth
Out of all those kinds of people
You got a face with a view
I'm just an animal looking for a home
Share the same space for a minute or two
And you love me till my heart stops
Love me till I'm dead
Eyes that light up, eyes look through you
Cover up the blank spots
Hit me on the head Ah ooh

How Did We Get Here?

Who knows?

Our family's latitude for individuality may have been broadened when Frazer was born.  Every step forward involved herculean effort from Frazer.  From speech therapy to occupational therapy to to neural feedback to private tutoring for dylexia, Frazer has been a draft horse marching along at his pace ultimately arriving at his destination.

Quirkiness abounded but surrounded by caring folks from Sabot to Southampton to St. Thomas, watching Frazer navigate friendships and life through these communities inspired William and me to believe in the strength of community and friendship. 

Two years ago, many of Frazer's friendships started slipping away.  In sports, it was understandable that he was not able to compete with his peers.  In academics, he began to be less engaged with this groups and clubs.  At home, he wanted more and more time on the screen.

Whether we did not pay enough attention because we were dealing with issues with the other kids or whether we just kept expanding that circle of acceptable quirky behavior, last summer Frazer mentioned seeing other people and hearing voices.  At first, I ignored it.  Then, in a conversation with just William and me, Frazer described the voices as "Powerful." 

That conversation was a turning point and many interventions and questions began with professionals and Frazer. 

And Frazer continued to withdraw into his world.

By February, he rode his bike into on-coming neighborhood traffic because he thought was morphing -- changing into a superpower and controlling traffic.  Porter watched the whole thing and said the cars almost hit him and each other.  Frazer did not even know.

After confirming diagnosis at Mayo in March, I sought out NIH for therapeutic studies -- ones in which no medicines were tested on him.  Part of the issue with schizophrenia is that there is no lab test.  However, William and I have friend who was able to recommend how helpful NIH could be.  After showing the study to the doctors at Mayo and in Richmond, I contacted NIH.

The screening process was grueling as it should be.  I will share more of that in another post. 

Two months later, we are here and are hoping Frazer can get the help he needs to reconnect with his communities.

New Room

Houlder about 3 months old

Almost 19 years, I had this delicious baby boy.  He rarely cried.  He fooled William and I into believing we were good parents.  We had the touch.  He slept which we somehow believed we made happen.  He sang himself awake in the crib, in another room, while we listened to his tunes.

One of the best gifts of parenting is the dismantling factor of smug righteousness.  Having children who did not follow the scrip or our lead barreled down our pride and produced plentiful humble pie which comes without a direction manual.

Each subsequent child provided glimpses of knowing and unknowing what the heck we were doing.  We reminded ourselves that they were all alive, fed, housed, and clothed.  Our expectations expanded to reality -- not Lifetime movie fluff.  We managed each kid and scrambled.  I went from organized and early to perennially late and scattered.   I came across as flaky to those just meeting me; during the unctuous stage of my life, I would have cared. Now, I just hope my shirt is clean and I have everything I am supposed to have.

Dell about 15 months

Dell about 18 months with Max Bunster

Frazer 2 weeks with Grandpa Sid

With Frazer, there has been mystery, quirkiness and joy.  A much longed for soul after three miscarriages, his dramatic arrival at the beginning of Y2K was chaos.  His family has embraced this chaos, guided it and enjoyed him.  We had no clue, but we had love.

And, often, we worried for him.

Most notably Frazer is petite.  He looks like an 8-9 year old.  That size has allowed us to perhaps ignore things that were beyond quirky.  The past two years his friendships slipped away.  He was enraptured more and more in a world he only he knew.   

Frazer at 5 in preschool

Monday, he handled his inpatient status happily.  He has his own room with bathroom.  As as sibling  who has always shared, this is an improvement of some nature.  When Porter and I left that night after a bedtime reading, we were sad.

Yesterday when Porter and I went to spend time with him, Frazer asked us to go.  He was otherwise engaged alone with his mind and a show.

We left respecting his request. Porter and I both had those achy pits that make you want to barf or cry or zone out.  I am still unfolding my emotions.  Essentially this writing is for me.  I can share some of Frazer and some of what we are learning, but I need a place to put my voice.  To hold my fears and gratitude and I hope some laughter and lightness.

Houlder 10, Porter 7 months

My 25th reunion from college is this weekend.  I opted not to go even though I have spent past ten months thinking about it.  My friends are gathering in one of my most favorite places on earth to celebrate and embrace our youth.  It feels lonely, but this is my choice.  I can't shake off this responsibility.  A babysitter cannot be mom.  Hopefully I will not be asked to leave again.

But if so, I will come back to my room and watch my reunion unfold on Facebook.  I am not sure if that is great thing or something for which I should be embarrassed.  It is honest.

Admission -- an announcement

Spring is the season of admissions in the life of a senior in high school.  There are admissions into college, technical school, or  work.  Mostly, in our lives, there has been discussion and Facebook likes of where friends and family friends are heading in the fall for college.  For Houlder, this has been a pleasant and fun time with his admission into Kenyon since December as an Early Decision candidate. 

I studied Latin as a means of improving my SAT scores and thereby increasing my chances of admission into a "good"college.  It was not until 10th grade that I got the chance to study Latin.  The logic of the language raised my GPA as Latin came easily to me, and it made sense of so many of the "exceptions" in English grammar.   But, I am not sure it did much to boost my SATs because the link between the root and its current meaning were not always apparent to me.

Take a word like admission. 

Ad = to + mittere = to send or let go.  To me, to send to or to let go to is a simple translation. 

The first result of a google search of the word admission is the Tina Fey movie about getting into an Ivy with subsequent hits on stories about the intense competition to be admitted into a college.  But, pry deeper into a hardbound Webster or a web dictionary; admission's first definition is a statement acknowledging the truth. 

Telling the truth?  How did to send to or to let go to become to acknowledge a past of lies or misinformation?  Hence my trouble with SAT.

The second definition of a letting into a place, organization or institution seems easier to trace back to its roots. 

Eliminating higher education from the equation, where are places people are admitted?  Exclusive clubs, memberships in to associations based on dues, and the hospital come to mind. 

People are also admitted into studies so that scientists, researchers, and doctors can continue to further define, decode, and hopefully heal the human body and mind.  Maybe they even uncover the Truth.

In an effort to keep our friends and family informed and to hopefully remove stigmas for mental health, Frazer and I are moving to NIH in Bethesda, MD for a few months.  Frazer has been admitted into a 23 year long study exploring Childhood Onset Schizophrenia.  Frazer approves and wants me to blog about this because he does not have the burden of socially imposed shame. 

For now, if you have the time, please watch this 13 minute Ted Talk from the Head of National Institute of Mental Health at NIH.  In it, he explains how medicine and science have reduced mortality in many areas with the exception of mental health, and he mentions a study by Dr. Rapport regarding COS (Childhood Onset Schizophrenia).  This study is the one Frazer has gained admission.

It is the season for admission, graduations and commencements.  We begin.

Principal Principle

Life is no crystal stair or rose-colored vision of great imaginings or grave hauntings.  Waking up and managing until slumbering again is dirty, tough work.  Slogging through some days and coasting on others, nary a soul enters the universe who does not feel.  Humans suffer.  It is my principal principle as is its inverse, humans hope.  On this continuum of birth and death, we shape our genetically imbued temperaments and bodies in community with others. 

To surrender, crying is cathartic.  To endure, laughing is mandatory. Weeping or guffawing without a thought is a reaction, an integration of sensory and spiritual existence.  When time seeps into the process, digesting and unfolding feelings becomes labor.  In this space is suffering and hope.  The machinations of mental musings manipulate — how to emote and how to cope. 

 

As February bitterly closes down, my soul senses spring, a warming to changes, to growth, and to freshness.  Throughout February I yearn to hibernate into the mental musings this short increasingly lighter month provides, but teaching, parenting and managing a household do not lend themselves to hibernation.  February is the drudgery, the gore, the fumbling for hope in a 28 day span that is marketed to promote all things love.

This compact month drives my souls to contemplate the whys which I avoid.

Three years ago in January my blog went public on Facebook as we delved into the medical morass of our lives.  Many things are improved and many things chronic.  No one expects to parent through the lens of forever ill kids.  As a new parent, I wondered and worried over what might be fatal but never contemplated the load that one bears when faced with everyday. 

And I did not understand or grasp that fortitude is the elixir.  February’s surrender to dark refuels.

Wrapping up in flannel sheets with movies does not wash away the the dirty floors or toilets or magically make headaches vanish or fears dissipate, but like a hug it is my cocoon.  Getting out of my own way, I am gratefully never granted a full retreat courtesy of swimming. I time life’s measurements in seconds down to the hundredths place — for others.  Aching for my own race and moment, I must make it to the 28th to march into March with my mental musings behind me.

Four years out, Houlder copes.  He is 18 and instead of being able to gloriously revel in youth must moderate his life every moment.  Little is care-free.  Youthful abandon is not an option.  But — and it is a but of resistance and in that is hope — there is a future.  His forward motion is measured in those infernal milliseconds.  He will graduate in May.  He will go to Kenyon in the fall.  He will have completed two and half full years of high school.  He will succeed despite the gray cloak.

February grants me permission to scream and rage against injustice, to pull against the forces, to wallow in the grimy griping.  But like a bad B movie, the month ends with my monster rising out of the mud and clunking forward toward its next target.  Hope is the target as I wash off the sludge and primordial ooze.