starchamberexpereience: Susie

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

Every day begins with a list -- the items to add new for today and the items to finish from the day before, or even the week before. I may write this list in my calendar, on a To Do app, in Evernote, or the back of a envelope. I don't often refer to it once I have stated my objective. An evil blessing or a kind curse allows the list to ticker tape in my mind through out the day. At night, I mentally cross off and add more trying to figure out how I will accomplish said goals.

It has been years, or never, that the list has been empty. As William can attest, I generate things that "need" to be done in my sleep.

This week and weekend, I have given special care to laundry. I don't think we had hit a point since Thanksgiving that each person had their laundry mostly away verses mostly in process. As much drudgery as laundry can be, I felt good as I trucked down to the basement multiple times to make sure everyone has clean clothes. Tomorrow I go in to have one screw surgically removed. It is a bit early but I have been having trouble with it. Nothing like rolling over in my sleep and being poked by the screw in my leg. It is both an odd feeling and one that has kept me awake for days.

Sleep has been super elusive. I watched all Downton Abbey in two nights on netflix. Great show. Looking for another series to keep me company at 2am. One thing I have not crossed off list is the to do list for Mayo. As we are a month out, I am beginning. Sometimes every day life and living in the moment is more fun than prepping.

For those who follow and care, Houlder is still weak and not going to school. He has improved ever so slightly in that he is not in bed 24/7. More like 22/7. I have been working on long division with Frazer. After two weeks I feel like we are making progress. Wowza. I am trying to remember if this was tricky for me to learn. I don't think so but I am challenged to keep thinking of ways to explain the steps. Thankfully Frazer is patient.

Final swim meet Saturday and lots of birthday parties for Porter. I hope this recovery is simpler and less complicated. I have planned ahead for food and driving and life. Hopefully this removal will decrease the pain.