A Good Day for JHD

In memory and in honor of my former student, “CD”, I have actively advocated for other teenagers with Juvenile Onset Huntington Disease.  So today,  it was absolutely awesome to read this email from HDSA, the Huntington’s Disease Society of America:

Social Security Commissioner, Michael J. Astrue,
announced today that the SSA is adding
Juvenile Onset HD (JHD)
as a Compassionate Allowance (CAL) condition!

This means that, in August, when the program becomes effective, an individual diagnosed with JHD can get their Disability application approved much more quickly – sometimes within days. Medical conditions on the Compassionate Allowances list are so devastating that they qualify for Social Security benefits based on minimal objective medical information.

 This is an important victory for our families facing Juvenile Onset Huntington’s disease, and HDSA is proud to be a part of this victory. Over the past several years, we have been working with SSA to streamline the Disability application process for HD, and to advocate for a CAL designation for HD through letters, testimony at hearings, face-to-face meetings, as well as legislation such as the Huntington’s Disease Parity Act (HR 718/S.648). We will continue our dialogue with the SSA until adult-onset Huntington’s disease is also added as a CAL condition

Wonderful organizations, like HDSA, work to support and give Hope to families facing devastating illnesses.  And your advocacy can support their work.  Contact your Senator, Call your Congressman, Write your State Rep.  E-mail or letter, it doesn’t matter.  Pick your cause and do it!  Your small contribution may help to make a big difference in the lives of others.

CD … I know you are smiling today.  You are loved and missed!

Life is fine,

Sarah

A Holiday Requiem for my Father

Four years ago, I was reminded just how fragile life is when my father passed away a day after Christmas following a brief illness.  The preciousness of each day was highlighted for me  that holiday week. 

 Holidays often do not turn out how we  plan them.  Our lives often do not turn out how we  plan them.

This year I ended up in the hospital for emergency surgery right before Christmas, and it reminded me of the poignancy of my last holiday season with my father.  Soon after  I was back at home, I searched for the scrapbook I had made for him and found a piece of writing I had forgotten about. 

 The piece consisted of hastily written-down comments  my father had made and observations I had during that time four years ago.  It had been my attempt to capture and remember in writing the spirit of my father as he was leaving this world. . . .

At the end -

He was apologetic

       - To me, to my daughter, to my sister (when he was confused and thought I was she)….  for hurting us in anyway.

He was quiet and reflective

     - Speaking  of his long forgotten friends from high school and remembering that a friend who was Jewish had a hard time socially in their 1940’s community.  He admired how his friend had handled it.

He was gently brave

      -Trying a Healing Touch treatment offered by the hospital chaplain (My Dad was a 1940′s veteran, not a “new age” type of fellow), he commented afterwards “That was Wonderful!”  When the chaplain responded “You’re glowing”, he said “Really? I haven’t been glowing much these days.”

He was sarcastic

    – Joking and laughing with the nurses, he liked that they appreciated his wry sense of humor.  Speaking of his sister, he said it annoyed him when she sat on his hospital bed without asking.  He observed… “She sits on my bed and holds court like Grace Kelly!”

 He was peaceful and calm

   -Listening to Christmas music we had brought, Ave Maria became his chosen favorite.  At one point he asked for us to turn off the music but to . . . “wait till Ave Maria is finished”

 He was parental

    – Asking my grown daughter when I was out of the room, “I think I know the answer to this question, but is she (meaning me) a good mother?”

      My daughter replied “She’s wonderful”    

      My father replied “I thought so”

He was ethereal

    – Lying so still and calm in his bed with his hands folded in prayer position, I often thought he was asleep when he was not.  If I would get up to leave the room at these times, he would suddenly open his eyes and say “Just sit with me…”      I think he wanted that peaceful protection of someone you trust watching guard while you rest.

He was illuminated

    -Letting the burdens and hurts of this world pass from him, he reached out with the deep inner love that is within us all

Love you Dad!  Miss you!

Life is Fine,

Sarah

Mothers Who Walk

During the course of a work day, I see many mothers with their children, but my heart is most often touched by the Mothers Who Walk.  Let me explain.

My job keeps me on the road between the early intervention families I visit and my office which is based in a public  school.  Our little school is pretty special because it’s dedicated to teaching only preschoolers.  It is home to the town’s Head Start program where there are morning classes, afternoon classes, full-day classes and lots and lots of preschoolers!

Every day, as I travel to and from my office, I witness the coming and going of the daily tide of students and their families.    Dedicated parents and family members  bring their children to attend Head Start and then return later to bring them home.  There is no town-supported bus transportation for our Head Start program.

Most of our Head Start students arrive by car.  It may be in a family or a friend’s car or sometimes even a taxi, but a car is the most frequent mode of transportation.  However, there are some families who do not have the luxury of bringing their children to school in a car. 

 These are the Mothers Who Walk . . . with their children in tow . . . for at least a mile from the bus stop . . . in rain and in snow . . . in sun and in wind.  And I don’t even  know how far they’ve come to reach the bus stop that’s nearest to our school.

Like most state contracts, our teacher contract does not allow us to give parents or students a ride in our personal vehicle.  I understand the value of this rule as it’s good protection for both families and teachers.  But it is so, so hard to drive past the Mothers Who Walk especially on winter or rainy days. 

I have to confess that I will  not be confessing  whether I  or other  teachers have on occasion breached our contract’s “no rides” rule.

Can you imagine this past winter when snow banks were over 4 feet high?  I could only see the heads of the mothers who walked their little ones to school.

Can you imagine walking a mile on a super hot day while in the last trimester of pregnancy?  I have seen mothers doing this while carrying a baby in their belly, pushing a toddler in a stroller and holding the hand of a preschooler.

Can you imagine trying to contain the boundless spirit of a preschooler to keep him safely on the sidewalk for more than a mile – after possibly a bus ride or two?  I have seen dedicated mothers who do this every day and  in all kinds of weather.

Today we had a Fall Festival at our little school.  It was held in the late afternoon at the end of the day’s classes.  For most of the parents this schedule made the festival more easy to fit into their day,  but this was  not the case for all of our parents.  

 A few of the Mothers Who Walk who have children in the morning session made the walk to school, again,  just so their children could participate in our Fall Festival.  As I was heading home after the Festival, I noticed one of these  Mothers Who Walk with her preschool-aged son and her two older boys who had also attended the festivities.  They were walking home together standing physically near one another . . .  a close-knit  family in the waning daylight.

My heart was warmed by this mother’s dedication.  I wondered if she had  noticed her accomplishment in bringing her family close together on this day.  It’s so easy when you’re  a parent not to notice your accomplishments.

All of the young mothers I see, but especially the Mothers Who Walk , walk toward a brighter future for their children.  They have a purpose and a vision for their family’s future.  Even if they do not see it yet . . .  I do.  They have made a commitment to learning and to family. 

. . .  I am so incredibly and indelibly touched by that.

Life is Fine,

Sarah

Understanding 9/11

I do not have words to offer so I offer another’s . . . .

            “I do not want the peace which passeth understanding, I want the understanding which bringeth peace.” 
                                                                                       

  -  Helen Keller

 

Life could be even finer,

Sarah

 

 

Simple gestures

 

I have a quote from Rumi posted near my desk at work.  It helps me find my   center each morning.  It reminds me of the purpose of action.

                  “Be a lamp or a lifeboat or a ladder”

                                                                    -Rumi

Yesterday, I was more of a step-ladder…. but it still felt good.

Yesterday, I helped a work acquaintance with the simplest of gestures, a ride back to a restaurant where she had forgotten her wallet.  In doing so I learned that she’d been upset about more than just forgetting her wallet.  We chatted briefly, commiserated, laughed and rejoined our group who was going to see a movie.

We have all been there when on some given day someone has turned our challenging moment into a moment of relief. Some small catalyst of change …..a kind word, a reassuring hug or a shared laugh…. has changed our perspective and moved us to a more positive reaffirmation of the moment we are going through.

I have been offered lamps, lifeboats and ladders. The kindness of others has taught me about reaching out. But here’s the thing, being a ladder for someone else, lifts your heart as well….in an instant.

My work acquaintance is now more of a friend.  A simple gesture turned a nice evening into a very nice evening…for both of us.

Rumi ……     pass it on

Life is fine,

Sarah

Rock ‘n roll

Sitting on the floor,  toys strewn about,  in a house not my own.

I was with my teaching partner, MT, when the Earth decided to move.  MT and I only rarely do home visits together, but this past  Tuesday, we were sitting on the concrete slab floor of subsidized housing assessing a little boy’s developmental progress.

 My world was decidedly rocked.

In a moment, everything before me turned in to visual waves.  The curtains, the TV, the rug became flowing linear lines that shimmered like waves on a Spectrograph.  I asked MT if she saw it.  “What? See what?” she said.  The movement suddenly changed.  I revised and asked MT if she felt it.   MT paused and our eyes met.   Her look of concern acknowledged that something was not quite right.   We both waited to see what would happen next.

The motion intensified and then suddenly stopped.  We quickly and reassuringly dismissed it, “Maybe, the neighbor was playing music with the bass too high”.  But the dismissal did not fit.

My cell phone started ringing.  It was my daughter from Virginia calling.  “Did you feel the Earthquake up there?” she said, “It rocked our office building, but everyone is all right.”  Fear and relief claimed my consciousness at the same time.  An Earthquake.   All was well but could have been worse.

The little boy we were assessing suddenly began to cry.  His response to the environmental shift was pure and unedited.  MT reached for her phone and called her mother to check on her son.   We left the visit a bit shaky feeling decidedly off-balance. We called the office and family and friends.  It was jarring to learn that some people had not felt the quake at all.

That Tuesday evening, I remained uneasy and unsettled by my earthquake experience. I was unable to roll with the events of the day.  I thought about the distance that separates me from my daughter especially when thinking about what might’ve happened.  Other recent earthquakes kept coming to mind.  My daughter had known a college friend living in Japan when the quake hit there.

Mostly, I thought about Fate and how it sets people together or apart at critical moments in life.  For the most part, we don’t get to choose.   I wondered, what if  this afternoon had been the last of my life.  I considered my company at the time of the quake, MT and a 2-year-old toddler named  NG.

MT is gifted at being a teacher, a mother and my friend. We most always enjoy the toddlers and the families we visit.   Today had been no exception.  NG had made his silly “Thinker” face.  His favorite since it always makes the grownups laugh.    MT and I smile and laugh and sing with our students.  We really do have some pretty fine play skills.   That thought made me smile as did the next  . . . It would have been okay with me to leave this plane in such fine company.

Sitting on the floor,  toys strewn around,  in a house not my own… with my teaching partner, MT.    I would’ve been honored to be in such good company.

……Just wanted to let you know MT

Reflections on blogging

It has been a year since I started this blog.  I thought I’d be writing more.  While I didn’t think that writing on a regular basis would be easy, I didn’t think it would be this hard.  In reflecting on what has made more frequent blogging challenging for me, I have come to some conclusions:

1.)    I love words and I love writing, but I’m a perfectionist.  Maybe it’s related to being a speech-language pathologist, but I recognize the power in words.  Especially the power in words, written or spoken, that are woven together well.

 2.)   I find it hard to share my personal thoughts in writing.  That said I generally do tend to wear my heart on my sleeve.  I can be overly earnest and honest in what I say to others.  So, I’ve learned to monitor my words.  And it seems this extends to my writing in a public blog.

 3.)  I find my monitoring of words is further magnified when carefully crafted phrases can be re-used by other, less earnest, bloggers.

 4.)   My work life can make unreasonable demands on my time.  As any speech-language pathologist can tell you, we have unreasonable caseloads and workloads that do not meet the suggested ASHA guidelines (www.asha.org).  I often write at night . . . comprehensive initial referrals, review evaluations, initial IFSPs and review IFSPs.  And I won’t even mention lesson plans (oh, I just did!).  All of these work related documents are specified, mandated, time-lined and rigorously monitored by one or more friendly government agencies.  After much holding of breaths, my agency just passed an in-depth file review with flying colors!  (This is what takes up valuable thinking and writing time!)

 5.)   I will write a paragraph when a sentence will do.  Enough said.

 My goals for the next year of this blog:

1.)   Post more frequently

2.)   Worry less about sharing  (Imitation is the sincerest form of flattery… sort of)

3.)   Write briefer, shorter posts

4.)   Don’t obsess over grammatical constructions

5.)   Balance Life and work obligations better   (…not just a blog goal)

As always . . . .

Life is fine,

Sarah

New Year Message in a Bottle

There is a children’s song… “make new friends but keep the old, one is silver, but the other gold”  At the beginning of the New Year, I think of memories like that.  Cherished old memories are like gold, while shimmery silver new memories are just waiting to be made.

Memories, especially as I get older, make the holiday season more bittersweet, but I’m fine with that.   It shifts the focus of the holidays and the New Year to an appreciation for the people and positive events in my life, both past and present.   After this season’s reflection,  I’ve decided to write a New Year’s “message in a bottle” to one of my cherished  memories.

In the 1970′s, I was a live-in  au pair  to a well-heeled Manhattan  couple and their 10-year old daughter, Lauren.  I was twenty, attending a well-known secretarial school and taking singing and dancing classes on the side.   My goal was to finish secretarial school so that I would have a way of supporting myself while pursuing a career in acting.  Naively,  I thought I could take on the New York City challenge… “if you can make it here, you can make it anywhere”.

I had lived close enough to the city to have visited frequently, but I arrived in New York young, sweet and relatively innocent.  Not only did I need to work on my acting skills, I needed to develop a tougher,  more street wise demeanor. 

However, New York had different plans for me.  What I learned during my tenure as a nanny was that my softer side was my greater strength.  

 To this day, I have fond memories of  afternoon walks to Carl Schurz Park with my charge, Lauren, and her dog,  Christy.  This was one of my favorite activities while living in Manhattan.

 

 I also fondly recall the many hours of laughter Lauren and I shared.  After school discussions centered around her experiences of  5th grade drama and friendship politics.  I think I gave some pretty good advice, but as anyone who has worked with children knows, I also received some pretty good advice about my own life.   

 After completing my au pair year and secretarial school,  I left Manhattan and my acting dreams behind.  I moved to another city with a slower pace that was a better match to my personality.  My goals and life focus had changed. Indeed, I had learned a lot  during my stay in NYC.

 I learned, like many  twenty-somethings, that if you don’t make it in NYC  you can still make it anywhere.  More  importantly, I learned the value of being true to who you  innately are …. perhaps, that’s the goal in this life.  

Later in my twenties when I had my own daughter . . .  named  Lauren.  I hoped my own Lauren would the have  the same qualities of strength, inquisitiveness and caring as Lauren E., and, of course, she does.  Hope so often creates reality.

I lost touch with my au pair family several years after my employment ended.  But  I have carried hopes and dreams  for Lauren E. in my heart for over 30 years.  Many thoughts of good wishes have been sent to her through the years.  I hope they have added to an already happy life.   My young charge is now a grown woman and a writer.  In this age of social media it might be possible to reconnect, but I don’t wish to intrude. 

So, instead,  I am sending this ”message in a bottle”  to Lauren E . . . may it find its way to you wherever you may be in this New Year.  You,  like my own daughter, will stay in my thoughts and prayers forever.   I am an  unknown cheerleader in your life.  I send hope and good wishes that life is well with you!  Namaste!

                                                                       Life is fine,

                                                                          Sarah

Pretty in pink, but prettier in purple

 

I always get a thrill driving across the George Washington Bridge, especially at night.  This particular crossing was a Friday  in early October, just last month.  It had taken me quite a while to even get near the George Washington.  Stuck in traffic for an hour on I95, the weather changed from clear to rainy as I neared the bridge.  Polite New York drivers made the approach even more challenging when construction required a lane merge.  

Limos, trucks and huge SUVs claimed their status on the road overtaking more humble vehicles like my own.  After all, it  was Friday night so  ”city rules” applied in this teaming, tumultuous traffic tie-up.  With many more hours of driving  before me, I was, quite frankly, quickly losing my Zen.

I took a deep breath in and a deep breath out.  Breathe in calm…breathe out tension.  This didn’t help a whole lot.  I took a breath mint.  That didn’t help either.  Traffic was still not moving at all.   I called on Reiki spirit, on the power of light and love, and I started to feel better.  And then …. my lane starting moving.

Finally, finally, finally, I was on the George Washington Bridge… and more than that… the bridge’s spans were lit in Purple colored lights!  How beautiful the bridge looked in the rain.  How absolutely unexpected and  amazing.  I captured it in a photo.

Lights on George Washington Bridge

What did it mean, I wondered, these Purple colored lights?   And then my mind turned to late September and the  tragic death  of a Rutgers’ student who had taken his life on the bridge.  These Purple lights  must be a tribute  to him.  How wonderful, I thought, society is surely changing when acknowledgement of such a senseless loss could be honored in such a public display. 

 How beautiful those Purple lights looked to me.  My Zen feeling was back. It seemed to me in that moment,  that tolerance for differences, as well as intolerance for persecution of those differences,  were true  possibilities. 

 I drove across the George Washington with a pretty good high.  I drove across the George Washington with loss and sadness for a young man’s life and his parents’ grief.  The Yin always with the Yang.

Of course, you must know by now,  my story does not end there.  From the George Washington Bridge, I headed south exiting at a rest stop.  I sent my daughter the photo I had taken and texted her about the Purple memorial lights on the George Washington Bridge.    She quickly texted me back……”the lights are Pink, its Breast Cancer Awareness month”.

……I sighed…..I reflected…..  Pretty awesome Pink lights, I thought.  We’ve come a long way to get Pink lights on the George Washington Bridge.  Society just needs to go a little further to have Purple lights on the George Washington Bridge.

Life is fine,

Sarah

Seasonal Gifts

The transition from summer to fall has always been a difficult one for me.  I mourn the loss of summer’s gifts…. beach weather,  bare feet in sandals,  berry picking with friends,  light clothing, flowers and  long summer evenings.  I am whistful when a walk to the town green  finds my favorite fountain has been turned off till next spring.

…. very whistful …..

 I am not sure why this brief melancholy sets in. Maybe its a carryover from childhood, when this particular change of season signaled the start of restless days in school.

I don’t mean to whine or complain.  My fall blues do not last.  Its not that I don’t recognize the lovely gifts of fall,  my daughter was born in the fall.    In fact, once fall is in full swing….right about now…..I start to  really enjoy the season.

Most people enjoy the fall in its full parade of color.  But I start to enjoy it when the colors are more yellow than red  and when there are more leaves on the ground than on the trees.  Its then that I can view the beautiful and amazing  architecture of  trees.  In kindergarten my daughter  described it as seeing the “bones of the tree”.  I couldn’t have said it better.

 

All day today, I noticed how beautiful the trees were looking.  In New England the trees have shed most of their more flashy fall wardrobe.   However, the sun sitting low in the  early evening sky  highlights  their mid-fall charms. 

 

My daughter’s birthday is right around the corner.  And predictably, fall feels comfortable again just like it did last year right about this time.  …..Maybe its a carryover from motherhood….. when the birth of my daughter signaled a new season in my life.  I am gratefully reminded that each season has its gifts.

Life is fine,

Sarah