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.

Chicken or Egg

I find confronting conviction challenging which differs from my enjoyment of healthy opposing opinions.  Refuting base beliefs whether founded on Wheel of Fortune, someone looking into a funny hat, or a homeless man who believes he is three people in one is nearly impossible.   What stimulates  absolute faith that stirs the vitriol in others is not always religious. 

Writer philosophers have wrangled with the messy continuum, to borrow from Heller, The Catch-22. 

I wonder what we know.  How do we know?  Is it cellular?  Molecular? Theta waves? Beta Waves? Sensory? Memory?   Is there a tipping point to borrow from Gladwell or instinct to borrow from Mother Nature?  And what did we know first, did it come first and does first even matter?

If I meet someone who is sure, can I suspend my doubt long enough to believe in their potentiality?

These are my thoughts on the plane, at a stop light, in the middle of the night.

Many people trying to figure it out, to theorize, to order, to profess the way.  Why do I feel as if I know less?

Almost two years ago an unexpected ER visit for Frazer led to the expansion my blog to include health updates on Frazer and then Houlder.  It became a great vehicle to receive wonderful help and kindness from so many.

I struggled to control my rage with my inability to find anyone who could help Houlder.  Every time I thought I had a hold on Frazer and where we were headed, a strong gale blew us on a different path. 

Most people who have so kindly held me up and said that they could not have done it, don't realize that they too would have fought.

We lucked out in Minnesota at the Mayo Clinic.  Houlder and then Frazer received validating and empirical care.  We -- all of us -- realize what a privledge it has been to be able to continue on and try to find a definitive answer.

Something to believe in.

A conviction.

The twist, to pick one thing, means that you are eschewing another.  I tend to expect the sun will come up tomorrow and that a falling tree makes noise even if I don't know conclusively that the sun will rise and hear the tree make noise.

Maybe it is age.  Maybe it is me. 

Maybe.

That's the dilemma.

Or not.

We are visiting Mayo and staying at Ronald McDonald House until next week for check ups, follow ups and some testing. 

Houlder is basically a great poster kid for the PRC treatment he did last year.  Yet, he has had a non-stop headache for over 2 plus years.

Apparently people sometimes just have to live like this.

Frazer has grown 1.25 inches since August which is massive for him and exciting as his thirteenth birthday is a couple of weeks away. 4 feet 4 inches 56 pound --13 year old boy. 

Apparently people sometimes can change their lives.

These doctors know a ton, are curious and explore, and I hear their best protocol and plan but the nagging voice in my head also hears that there is more to know.

I have tried not to be too rigid in thinking about life.  I have tried to embrace all different expressions of ideas.  I have tried to experience what I have not known.

We still have explorations while we are here but most point to a wait and see approach.  An approach in which I accept but rebel.

The past two years have been filled with emotions.  With unknown intuitions and persistence.  With friends and love.  With thoughts magnanimous and those that were not. 

I laugh through the struggles because it holds me closer to those whom I love and keeps my heart more in touch with joy than wallowing in the weeds.  The weeds often have appeal but I don't want to be there.  

Flying out on New Year's Eve

otherwise known as mom's birthday

hot tub boy

bit of temp adjustment

brothers and friends

more Dr. who

My conviction is not in the weeds. 

Home again!

Dell and Kate

Houlder  & some infra-screen

After our weekend of reading, exploring a little, Houlder resting, watching movies, and eating, we headed into Monday visiting the Pediatric Pain Rehabilitation Clinic on another campus of Mayo.  During an intake we learned that the three week program basically has a 100% success rate of getting kids with POTS up and going again.  Not at full speed but the intake doctor spoke of Houlder being able to swim again even this summer and for school again.  So, we head back most likely the end of April into May for this program.  Family participates four hours a day and he works 8 hours a day.  Weekends off.  

It is the only facility in the world which does this.

Thank you universe!

After this visit, we headed back to the hotel and hung out for a bit.  Then, we headed for the MRIs.  He was in the tube for about 2 hours getting three different types of images.  

Monday evening we had dinner at Mac's a local's Greek restaurant.  Yummy food and even more yummy milkshakes.  We came back to room and watched Jack and Jill not Adam Sandler's greatest movie but we laughed which is always good.

Tuesday was relatively free  until we met with neurosurgeon and neurologist.  Houlder rode the bike 11 minutes.  He has a very controlled exercise schedule to build his strength without the fall out of over straining his muscles.  I hit the pool and hot tub.  

Neurosurgeon does not recommend surgery at this time which is exactly what we wanted to hear!  Yippee!  The MRI showed us that his cerebral spinal fluid is flowing despite the low hanging cerebral tonsils.  The visit was only five minutes, but it more than answered our questions and showed us what we needed to see.  If the treatment is unsuccessful and he is still suffering with headache and dizziness, then we will revisit this anomaly.

This was Minnesota in March.

The only bummer was that Houlder felt rotten as we left and agitated.  One of nurses in POTS clinic gave him some relaxation CDs to help with the pain.  We headed back to the room and for two hours he listened, seemed to calm down, and settled without sleeping.  Good to know all that swim training is helping him. I used the time to start planning SRA social events for the spring and summer.  Glad to have that time to think and plan.

"I look through a half-opened door into the future full of interest,intriguing beyond my powers to describe."  William Mayo stained glass within hospital

Mayo Clinic

More sculpture which is everywhere around Mayo

When we headed to neurologist, I also used the time to schedule a visit for Frazer.  I am trying to coordinate it when Houlder returns.  For Frazer has recently learned that he has PANDAS to add to his little laundry list.  But, I feel confident getting him here will help guide and heal Frazer.  The neurologist supported the neurosurgeon's view and went over a few other things including the rehab.  He invited Houlder to come visit him when he is back.

When we headed back to room, Houlder still felt rough and wanted to listen to more of the CDs.  The weather was so mild all the the local establishments were putting out chairs and tables and umbrellas.  I wanted to hang outside.  Up he went and down I sat on this sofa in front of the hotel.  I played words with friends, texted friends the good news, talked to William.  A pleasant hour.  If I had only had a beer....

Heritage Gallery at Mayo; a mini museum

Will emailing, "Could this be the trim?"

We had dinner for the 4th time at the best restaurant we have found, Pescara, in our hotel.  The portions are huge, and we have eaten leftovers for lunch.  Last night we shared everything.  We talked.  Houlder eyed the couple next to us as they were over the top.  Of course, he was not subtle and needing a few reining-ins.  We ended the evening looking forward to coming home, talking to Porter, wishing my father-in-law happy birthday, and talking to my mother.  

We saw at least five different grand pianos.  This is one of the main lobbies.  People can play whenever.  Or sing.

We are mostly packed.  We have tons of booklets to bring home and the two binders I had sent in July.  A few treats for my sweet boys whom I missed and many feelings of relief and gratitude.  Friends have continued to support us and offer us such loving words.  They have had my kids over, found niches where they can feel good and be distracted by our absence, and reached out to reassure me.

Fruit ninja while we wait for neurologist.

'this one?"

William again emailing about the trim.

William has been a rock star.  Handling work, renovations, three kids, baseball, feeding, shopping, homeschooling, the dogs, the cats, life.  I am fortunate.  This path is not for the faint of heart, and we trod it.  Together.  Tired.  Trying to laugh.  Managing.  Greying.  But doing it.  These sons of mine are blessed to have such a role model in their dad.  I hope that they know that one day.

Up to pack the bags, have breakfast and head to an airport smaller than Key West's.  

To borrow from Ralph Waldo Emerson

      For each new morning with its light

      For rest and shelter of the night,

      For health and food, for love and friends,

      For everything Thy goodness sends.

Theory into Practice.

Butterflies

A peculiar sensation about destination medical care such as Mayo has been looking around and wondering how many other folks are here for the same
reason. On our flight to Rochester, a few folks appeared to be headed there-- their illnesses more outwardly apparent than Houlder's. I wonder what people might have though about us.

Looking at Houlder, my 6"5' burly man-son, who would guess how physically disabled he has become, how intense his brain fog is, or how he grabs the walls or my shoulders so that he does not pass out? Houlder has perfected the art of subtle need partially by design and partially due to being
16 years old and wanting to be an unencumbered teen.

We experienced all things airline related on time and no snow delays. Houlder and I had nothing to do on Monday. We had no wake up time, no time constraints, and no one else's needs to consider. We lolled --I read, he mine-crafted, and we both facebooked. We got up, had breakfast, explored Peace Park, a cool Barnes and Noble in a former movie theater, ate lunch, and Houlder crashed. He made it back to the room, but appeared almost to be stroking out.

I just breathe through it all. Grateful to for the promise of Mayo but holding a piece of my heart in check, protecting my feelings and perhaps Houlder's from disappointment. After two hours of massage, he relaxed enough to rest.

I scooted to pool and hot tub for an hour. I needed the time.

The hotel has a cocktail hour (free!) and it was packed with Mayo folks. The waitress knew certain patients by name. Folks recognized each other. We had an older couple chat with us in great detail about how Mayo had saved their lives. I wondered if this would be us by the end of the week.

Houlder did not feel well and headed back to room. I stayed to finish my wine with some guilt but maybe not enough.

By 7:45 I was back in our room. Houlder was restless, agitated and hungry again.

Room service.

More restlessness but then he succumbed to the sleep angels.

I fidgeted, facebooked, played words with friends and watched hgtv. I think I
might have slept an hour.

I feel as if we are about to lay out our soul and are praying and hoping
that the care providers here have the magic and skill to make us whole again.

All the while on the home front, William and Porter, age 7, lay a new kitchen floor, William and Dell ripped out a
toilet, and Frazer did some schoolwork. Oh, and it snowed. Face time, an apple thing, gave us face-to-face conversations. It was hard to have Porter, the contractor since birth, cry how much he missed us and would these doctors "make Houlder better."

Million dollar question sweet boy.

Karma, juju, prayers, naked dances under the moon, angst -- whatever you have my friends -- please include Houlder in your rituals this week.

Because here we go...hence the butterflies.

resting in Peace Park with Mayo Building in background

nifty inside too

view from our window-- destination Mayo

gone

banana cream pie

every 7yo should be so gifted

finished

H

snow day at home

Peace Park

On the ground

In a mad dash, I packed. Funny how it seemed to drag, but it did. I was trying to pack lightly to have an easy to tote bag, warmly to be able to walk around downtown Rochester even though we can manage our entire time here without going outside -- too weird,-- and plentifully to avoid using the coin washer/dryer.

William prepared a big lovely breakfast. While we sat around the table we had made and had two competing thoughts: we will not be together like this for a week and for one week I won't have to fix meals, clean up or listen to the diners complain about their meal.

Before I left, Porter needed me to document his latest tooth fall out. Fortunately the Tooth Fairy arrived although Friday night I forgot to call the 800 number to let her know Porter had a tooth for her.

We had a family photo. I brought some
Gamberian good luck with me with my 43022 hat (zip code for Gambier, OH). Porter and I had a special photo, because "You'll be missing me momma."

Included is a little documentation of the departure drop off, lunch in O'Hare, Houlder playing mind craft while waiting for flight, Dell painting a primer over the yucky wallpaper that will be GONE when we return, Houlder sitting down verses passing out while we wait in the chill for a cab or shuttle, and finally relaxing with my medicinal wine and smile.

I am trying using the iPad only this week and the blogger app. I can figure out how to add photos and cannot preview. I hope this turns out.

There is no snow here! Today will be in the 50s.

Irony.

Goodbye wallpaper.  Thanks Dell!

Shy guy at lunch.

First sigh.

"In case you miss me momma."

Not as boring waiting for flights as it used to be.

The bulk of the snow thus far

tolerance

Gamberian powers activate!

My rock

Dinner

produced the smile

Leaving on the jet plane

Smile to hold me for miles

Fifty Percent

Porter reading to Houlder

 In 1982, my 8th grade class traveled from Frederick, Maryland to Kings Dominion in Doswell, Virginia.  I was 13 and rode my forst roller coaster the Rebel Yell.  I had no idea when I got on that the cars would creep up that first incline so slowly.  I was worried that we might not make it.  And then suddenly woosh, we were off.  I would not say I became a roller coaster enthusiast but I ride them. 

Life for the Hudgins is the creep and woosh.  Plugging along trying to find humor in the black cloud hanging over our lives. 

When I first contacted Mayo last May and they told me it would be 15-18 months before they could see Houlder, I lost it.  I wept.  In January I wept to receive the call offering us this appointment in March.

Frazer reading.

And, then we plugged along. 

As I type this I am unpacked but mostly ready.  William will stay with other boys who are on spring break and lay new floors and renovate a half bath.  Some families go skiing or the Caribbean, Houlder and I head to Rochester, MN where it is snowing and they got a fot of snow last week.  Fortunately our hotel is attached to Mayo via a skywalk. 

I will try to update but basically he will meet with one doctor and have bunches of tests and exams.  We will be there at least a week.

I have books loaded on the ipad and am taking a few paper copies. 

Dell hanging with Jack the cat

Relaxing.

Dell on block for final swim meet of season

Jack and Annie suffering

Frazer and two buddies's geodesic dome out of newspaper

Porter Tiger Cub

The 43022 and purple and yellow m&m cookies for Shaka.  Trying to help a friend.

Porter ripping up the floor

Labor

Porter and Frazer with two friends on an overnight whale watching trip to VA Beach

So this was how we creeped.  Tomorrow we take off.  Thanks to all who have wished us well, hugged me, taken a child, accepted that we have to laugh in order to survive, and who are friends.  Praying for a cure but will accept something to give Houlder his life back.