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.