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

gratitude

A few years back I tried to embrace an Oprahesque thing and read from this book an entry on gratitude every day and write about something I am grateful for everyday.

http://www.simpleabundance.com/gratitude_journal.html

For a while I enjoyed it, but too often I found myself wrestling with the apparently saccharine notion of the day.  Sure, I am all about Elvis Costello's "peace, love and understanding," but every day I started to argue with what I perceived as the oversimplified.

http://www.youtube.com/watch?v=8WWp67DsTk4&feature=related

I was arguing with myself about an idea I could ignore.

This says something about me.  Perhaps nothing positive.

But, I stuck with it for a while because in my heart I believed gratitude was simple.  Something small which may not be a life changer but which makes every living more.  More alive, more free, more available. 

This year, as I contemplated the end of the year and any changes I wanted to make to improve myself, I contemplated a 365 project. 

http://makesomething365.blogspot.com/

They are sort of the rage but I liked the simpleness of trying to one thing every day that I chose to do.  I thought about blogging, I thought about gratitude journaling again -- sans agruments, I thought about mediation, photos, drawing, waking each day to a certain song, exercising, and eating well.  I wanted something that I could do every day and not the first month or two.

I decided to join some friends and do a Biggest Loser contest.  For the first 20 days, I joined some other friends, and we committed to each other online a support system to eat healthily.  It was great.  Folks would chime in when the day was rough or with recipes or what not.  I lost a few pounds and felt like I was doing something for me.  In honesty, we are still working together.  Some of us more successful than others but together which is nice.

But, then, my kids' health issues became something I had to pay attention to every day and planning my next salad or steamed shrimp seemed impossible.

They have become a 365, although I am fairly sure they already had that place in my life, and prompted me to write again -- not well or clearly -- but I am grateful for the catharsis from the writing and the ease with which I can disseminate information to our friends.

I spent most of my childhood and all my education writing.  Learning to write, learning to write better, to find a voice, to convey knowledge, to pass comps, to get into grad school, to learn about how to teach writing, to observe and assess writing, to write more, and so on. 

And, did I write letters!  Back in the day when long distance was expensive, and cell phones were huge monstrosities in movies, I wrote copious letters to every friend or family member I had.  William and I spent the first three plus years of our courtship in different cities, and we wrote letters and cards all the time.  We could not afford calling every night.  I remember being psyched when it was only $0.10 minute.

When the kids were in preschool, I spent a year penning the monthly newsletter.  Nothing fancy and nothing profound, but fun. For the last few years teaching Frazer I have learned how to parse language down the to the most basic of blocks (syllable patterns) and then build it up. 

But other than occasional notes and emails for SRA,  I have not written much in a while.  I had forgotten how much I enjoyed processing life through words.  Some folks see images or buildings or races or colors, I think in words and feelings.  

Blogging is still relatively unknown to me.  I follow a few but I don't scan the horizon looking for cool things.  I wish.  But it is a new media.  My father is techno savvy so he understands blogging, but it has been something that Will's folks and my mother don't know.  I am not sure they appreciate the nature of it. 

Ultimately, it has linked me to so many friends.

And that is what I am grateful for.  Truly.  In the last month, the struggles have not been limited to Houlder and Frazer but their needs have taken a precedent.  Dell did not stop being Dell.  Porter did not stop being Porter.

What has made this all so much more bearable is the gifts that have been delivered to a blue cooler near our back gate.  Flowers, cards, phone calls, emails, prayers, hugs.

The simple things for which one can be grateful.

For our friend who came by last week who brought a special healing tea she had gotten in Japan.  She searched her house and found it.  Three years ago she had brought it back form her first trip to Japan as memory of that great visit, and she shared her story and had Houlder drink it.

Healing tea from Japan

For all of Houlder's teachers who check in and want to know if they can visit and how he is -- the person not the student.

For our pediatrician.  He is wonderful.  Even on his vacations he was making phone calls on behalf of Houlder.

For my sweet friend who organized these meals and the delightful cake with gummy worms and a butterfly ballooning coming out of it.

Gummy worm cake -- delicious

For the friends who share flowers like these peonies.  A little beauty does the soul good.

stellar peonies

For the friend who calls and listens when I lose it and cry. 

For the friend who dropped a book by.

For the friend who has a play a date for Porter almost every week.

For the friend who shows up unannounced because she wants to make sure that we are okay.

For the friends who take Frazer places so that I can be with Houlder. 

For the friends who volunteer to help do anything.

For the friends who share their stories and their ideas. 

For the friend who we will stay with in Bethesda instead of hotel.  She would not have it any other way.

For the dads who sat with Houlder at the cookout last week talking about old movies and man things.

For the teenage boys who have connected with Houlder via chatting or texting or visiting. 

For my friends who pick up my kids at school -- almost weekly.

The list goes on endlessly.

I have mentioned before this is an Odyssey.  A friend emailed me to keep the faith.  She is right.  There is a certain amount of faith that one has. I am not talking about God, but that matters to me.  I think she means the faith that it will turn out okay.  That we can solve this dilemma.  That we will reclaim life. 

But only with the help of friends who have been willing to drudge through blather and errors and fears. 

I won't argue with the damn simplicity of gratitude anymore.  I got the message universe.

Thank you.