School Snob – Quest for the Perfect School

The Hampton Day School


When Shep and I had to go to the Wake County School Board to make a “personal appeal” for our rising freshman’s high school choice, 29 years of memories and struggles came back to me.  You see, I have been doing this year after year for a very long time. I can’t remember a single year, when I just assumed that my kids would simply go to the school “in our district.”  This includes the years in the Hamptons and the years here in Raleigh, North Carolina.  I have never given up and it has never been fun. Why, I asked myself, am I still doing this?

I have always wanted my children to be in the very best place at the particular time in their lives. This did not always mean the best school academically, but it did mean the most safe and nurturing place where I knew that they would be treated kindly and have their self esteem protected instead of chipped away.  This would typically begin with each child at around three years old, although with each subsequent child the year they began school became later and later.  My first and second children began “nursery” school at age three.  Oliver did not begin until age four. Gregory did not live long enough to attend any school.  Sam and Will began at 4 ½, much to the chagrin of Montessori and their “three year increments,’ for which they made me pay by keeping them in “Children’s House” an extra year.

When Nicholas turned three, I spent my time going from school to school observing and asking many questions.  I queried everyone I knew in La Leche League, as to what preschool they felt was most perfect and ended up taking him to the Methodist Church preschool on Montauk Highway in East Quogue.  Mrs. Shelton was the lead teacher and Mrs. Shima was the assistant.  It was a small, quaint school and Mrs. Shelton seemed cute, blond, bubbly and gentle.  Along with Nicholas went his best friend Melanie and it was reassuring to me, that my good friend Patty chose this for her daughter as well.  Once Nicholas “graduated” from his two years of preschool, the tension increased for me as I had to choose a kindergarten and elementary school.  By then, Peter was three and he also went to Mrs. Shelton’s school each day.  For Peter this was not a great fit, because he wandered most of the time asking over and over, “What should I do?” which annoyed Mrs. Shelton as she offered a myriad of suggestions from pegboard to painting, to no avail.  I suppose that had there been a Harvard preschool, that would have been a better fit for Peter and provided the challenge he needed.

When it was time for kindergarten for Nicholas, a new Montessori School had opened in Southampton, but it would be very costly for sure. Irene Gazza was the owner and had a home on the ocean. When I went to see the school, I knew it was the right place for my boy and enrolled him as I begged for financial aid. We got enough aid to make it work and off to Montessori Nicholas went.  I drove him each day in my old rusted, brown Volvo amongst the new and gleaming Mercedes and BMW’s.  Actually, the au pairs mostly dropped kids off each morning.

Then, I agonized over first grade and although we lived in Hampton Bays, I did not want to send my child to Hampton Bays schools. In retrospect, I wonder why. Was I a snob?  Were there too many children of fishermen there? Just what was the problem?  I ventured further west and scrutinized East Quogue school. This was also not the right fit for me, but again, I wonder why. Finally, when I came upon Quogue Elementary School and met the Miss Frizzle type first grade teacher wearing purple suede boots, I felt I’d found the right spot for Nicholas. Quogue School first grade with Mrs. Heatley it was, and although the teacher wore cool footwear, she really wasn’t all that special beyond her quirkiness.

For second grade, I lowered my standards to a more realistic level and acquiesced to Nicholas attending the local public school in Southampton. By now, we had built the first non-toxic home on the east coast, (for which we were well known and somewhat disliked) and it was in the Tuckahoe School district.  It was a so-so year with Mrs. Deutchman, not overly impressive for me and by the end of the year, I was off looking at other alternatives. It was then, that I happened upon the dream school – The Hampton Day School.

To this day, when I cannot sleep at night, I can muster up a picture of this school in my mind, feel the gentle breeze that blew over the former farm land and rolling hills, smell the sun combined with salt air, and drift off to sleep!  There was a certain place I parked my car under a certain tree that overlooked the fields every time wI went there.  This school, now called, “The Hayground  School” was school heaven!  Nicholas attended through sixth grade and Peter through third.  It was a completely creative, alternative, artsy nirvana.  That parents were brilliant, the staff was more brilliant and the administrators were brilliant AND kind.  I say that because, there was no way in hell we could have ever afforded this school where Billy Joel and Christy Brinkley along with Roy Scheider,  William Wegman and Barry Sonenfield sent their kids.  Each year, I would humbly beg on hands and knees, report our income along with the fact that I had three kids, and eventually, they would hand us a big, fat tuition allowance, inviting our kids to stay another year.  I helped out at the Annual Potato Festival and a few other events, but didn’t exactly build a new school for them or anything grand like that.  It was simply amazing and like I said, I can still smell it!


 How School Should Look!

Can you imagine?

In 1988, we moved into our fabulous, new non-toxic house on Barkers Island Road, Southampton, with our third baby and watched the stock market collapse all at once.  Shep was a real estate agent in Westhampton and the second home market was what it was all about. Overnight, NO ONE was buying real estate and our income ceased.  It was an awful time for us and we lived in a state of panic renting out rooms in our house, driving a school bus, selling organic food and produce, working for caterers and proofreading classified ads.  Aside from the wonderfulness of the children, The Hampton Day School remained the most wonderful and consistent part of my life.  In 1993, I had my fourth son and our house finally sold. We all cried like crazy at graduation and moved to Raleigh, North Carolina shortly after.

We moved into our Raleigh apartment in June and school would begin in August.  I had very little time and no knowledge base to figure out the three best schools for my kids, so I relied on some La Leche League contacts I made before I moved to North Carolina.  They suggested that my middle schooler attend the newest school, Leesville, and the two elementary school kids, attend Stough.  Public school? I thought.  A stretch for sure.  One day at a tennis court where my kids were playing, I overheard these two women talking about “homeschool.”  I eaves dropped intently since I had never heard of such a thing.  No one did that in New York. They based most of their schooling on what sounded to me like a very religious curriculum and were comparing resources.  I found it foreign but intriguing.

So off went adorable little Oliver to start kindergarten with Miss Suggs, held by the sweet arm of older brother, Peter starting fourth grade with Miss Dickerson.  Other than the humiliation of Ms. Suggs Red, Yellow, Green light behavior modification system, and my chagrin at having to do carpool every day right in the middle of Baby Gregory’s naptime, it all went well.  Middle school however, was a disaster.  Nicholas would literally lie in his bed crying and begging me not to send him to school each day.  He promised to do whatever he needed to do, to not go back there.  I never heard of such a thing and did not know what to do to help him.   I think that the combination of moving in middle school, his social anxiety issues and a woodworking teacher who demeaned and embarrassed him over one of his projects, (in front of his entire seventh grade class) was just more than he could handle.  He began begging me to “homeschool” him and honestly, other than the moms on the tennis court, I had no idea what this meant.

I acquiesced and attended a homeschool information fair, felt totally out of sync but plunged in anyway, feeling like I had no other choice.  I proceeded to homeschool Nicholas for all of middle school, toting Gregory along to all homeschool groups, field trips, etc.  I made some good friends amongst the circle of mothers who met each week and they ended up seeing me through one of the most difficult times of my life, that lay ahead.  I learned a lot over those years and when we bought a house and moved, I began my perfect school search once again.

The magnet school system was flourishing in Raleigh and so I put my applications in, and Oliver and Peter were assigned to first and fifth grade in Conn Elementary.  This was NOT good.  Oliver was a nervous little guy who cried on most of the first several days of school.  Miss Mack would come out of her classroom to deal with Oliver’s sobbing and for some reason instead of patting him on the back, she would begin patting him hard on the chest as if he were choking and needed Heimlich!  It was so disconcerting to him and of course, made him cry harder.  Peter’s teacher whose name escapes me (I have tried to forget her) told us at the beginning of the year that she “was done and retiring at year end.”  She acted in this disconnected, “done” way the entire year.  When I went to a meeting about science class and asked if it would be helpful to the kids if they could actually see crustaceans… her response to me was, “Go ahead, knock yourself out, buy all the lobsters you want and bring ‘em on in.”  Oy.  I declined.

By March of 1995, Gregory was two, Nicholas was happily homeschooling and I could take no more of Conn Elementary so I took Peter and Oliver out and began homeschooling them too. I planned to do this for the next few years since by now, I had gotten in the groove. Every Tuesday we went to the homeschool group at the Y downtown, and Gregory and I would use that time to do our shopping in Wellspring, now known as Whole Foods.  He would have a grand time checking out the cookies and dried fruits in the bulk bins and was well known in the store, known as “The Wellspring Baby.”  However, on May 4th of that year, Gregory drowned and our family fell into utter despair.  Needless to say, homeschooling was off the table, and really breathing was pretty much off as well.  Surviving hour by hour was about the best any of us could do.

Our friends became our lifeline and they and our priest, Diane pretty much took over the care of our kids.  Where would they go to school in the fall?  Oliver had been in the midst of learning to read and came to an abrupt halt in development.  Peter was in the throes of beginning middle school and was doing poorly. We feared he would not make it from one day to the next.  Nicholas was about to start high school and was coping by pretty much not coping at all.  By the grace of God, an anonymous donor (who I have since figured out) paid the registration fees for Oliver to attend second grade at The Raleigh School, which was a small, elite, rather calm place that might be able to care for him properly.  La Leche League of Raleigh raised money to pay for the tuition or worked out a reduced tuition with the school.  I will never know, but did know that I was grateful beyond imagination.  Peter would attend a magnet middle school, Carnage for seventh grade, yet, as it would turn out, he was so loaded with Paxil that he slept most of the time.  Somehow, his amazing brain kept absorbing anyway. What about high school for Nicholas?  I applied for Enloe Magnet, which was the hot high school at the time.  When I got the letter in the mail denying his application, I went berserk.  I raced up to the school board, stood in front of the whole panel and completely lost it.  I started yelling, but dissolved into complete tears, sobbiing over and over, “My son lost his brother, he lost his brother, his brother drowned, please do not hand him any other disappointments.  Allow him to attend whatever high school he wishes to attend.”  And so, they did.

I spent that year, crying in my car all the way to Raleigh School each morning and all the way home each afternoon, but I will say, Oliver was in the safest place he could have been. Although, this was a school of unreality, where Oliver was not to discuss the death of his brother, the teachers would not read up on how to deal with death and children, and when Cllinton, the class parakeet died, no one would discuss it.  He had simply “disappeared.” Peter spent the year in an altered state, staring into space and seeing a therapist every Monday night who promised him that if he turned his pillow over and put his head down on the cold side, he would surely be able to fall asleep. Really?  Nicholas navigated as best as he could, in the most panic over lunch and how he would find the chutzpah to sit with someone, each day. For the 8th grade, a new charter school was opening called Magellan.  Peter wanted to attend, even though it would only be for one year in 8th grade, before high school.  He had a good year there and started coming back to a new normal.    Peter would also attend Enloe for ninth grade the next year.  Oliver was attending Hunter Elementary, which was a public magnet school deep in the Raleigh ghettos.  He would leave at 7:45 am and not return until 5 pm because the bus route was hopelessly long.

I was never done.  A new high school was opening and charter schools were becoming the rage. Peter insisted that he would go to this new school and leave Enloe.  I was vehemently against this idea.  No one wins in an argument with Peter, EVER.  He won.  And for three years he was in the greatest high school he could have chosen, Raleigh Charter High School allowed him to not only play in every sport but to be captain of every sport.  He thrived and fit into the skin of the brilliant boy he had become, but really, had always been.  He won an all expenses paid scholarship to NCSU and later switched to Harvard College.  Wow.

Nicholas graduated with honors from Enloe, had made some friends and got into NCSU with no problem either.  He was so smart and slid through high school seamlessly, quietly studying and quietly pulling almost all A’s throughout, with never a ripple.  Amazing.

Oliver had finished 4th grade at Hunter Elementary and it was not going well.  He was grieving deeply and saw the counselor regularly whose name was Miss Lyle. She would pass him in the hall and say, “Smile for Miss Lyle” but when she retired and was replaced with another counselor, things deteriorated.  The new counselor disapproved of Oliver’s admission that he “prayed to Gregory.” Gregory is not God, she said, and you can’t pray to him.  Oh yes he can!

It was then that we decided that if Magellan (4-8th grades) was so great for Peter, it would be for Oliver as well.  Magellan was a success story and had a long waiting list despite its playground being the asphalt parking lot in front of its business office looking building. He would be starting 5thgrade.  They would not take him for 5th grade as they said they were full.    I was desperate enough at that point, and with his permission, enrolled him in the 4th grade for a repeat performance.  As great as the school (albeit only one year) was for Peter, it was that horrible for Oliver.  He hated it and was miserable.  He was still struggling terribly with reading and writing, needed help along the way and was very depressed.  The snobby, elitist 8th grade teacher, Ms. Ledicotte had adored Peter because he was an incredible writer.  Oliver was not and she ridiculed him and wanted little or nothing to do with him.  Mr. Coccarelli felt that Oliver was “a problem.”  I actually felt that “Mr. C” as he was fondly called, was an incapable, pompous ass, but I will refrain from telling you how I really feel!  He was such a poor teacher that he was actually demoted one year from fifth grade back to fourth grade!  I would say it was one of the worst five years of school for any of my kids!  Oliver’s teachers had no tolerance for anything less than perfection.  They were intolerant of his reading struggles, his depression, the year he dyed his hair pink, his skateboarding, and did not allow him to attend the year-end trip one year when he threw a roll of toilet paper around the bathroom.  It was completely humiliating.  I was living in hell myself, and did not identify at all with the monogrammed moms, their cute pink shoes or their Lilly Pulitzer skirts and highlighted hair.  Sometimes I would just stare in awe at the mundane conversations they were having wondering what it would feel like to be “normal.”  But then, I would tell myself that behind closed doors, perhaps their lives were truly as difficult as mine.

I gave birth to the twins while Oliver was at Magellan and one day I was home with them both screaming in pain from colds combined with ear infections.  I was also weeping throughout the day, so when Oliver called me begging me to come to school to sign a paper that he forgot to have signed, I refused.  He begged me more and said that he would be in huge trouble if he didn’t get my signature.  I was a maniac on a mission when I loaded two snot-covered babies into their car seats and drove to school.  I marched into the building carrying one in each arm and I was red with rage.  When I got to the office to sign the darned paper, I could not figure out how to hold both screaming babies and sign my name.  All eyes were on me, when I began swearing up and down and said, “If you ever call me up to this school again to sign a @#$%^ piece of paper,  I don’t know what I will do, but it won’t be pretty.”  I was cursing like a true New Yorker, which of course, I am, but this is not so cool in the South!  The principal picked up the phone and called my husband saying, “Your wife is cursing in my school!”  Shep responded, “So what else is new?”  Was I busted? Did I get reported to “my daddy?”

I still went through school hell each year and when Oliver was ready for high school, I started again.  He was wait listed as number 2 for Raleigh Charter High School, where Peter had already left to attend college.  The timing of the birth of each of my six sons never enabled them to get into schools on the coat tails of older siblings .  He did get in, and while it was not the best fit for him, the smallness and the caring of this school were probably the best we could have done.

I started out with a homeschool preschool for my twins with some friends.  It kind of came to a halt when the other moms said my 3 year old twins had pulled down their pants in front of the other kids.  To this day I have never figured out what the problem was, but the next year, I toured the Montessori School of Raleigh. This was about elite as it gets and certainly the most expensive school around. I LOVED it!  And, so there I was again, begging.  I suppose I have always felt, that my children deserved everything and more in an education that the richest or most famous kids did.  I think that was rather grandiose thinking on my part, but I have always been determined to get them the best of the best in education, despite never being able to afford it at all. Considering I grew up in the public schools of the ghettos of the Brooklyn projects, I have no idea where this sense of entitlement came from, but it is for real.

So, year after wonderful year, Sam and Will attended first Children’s House for two years, then Lower Elementary for three years and Upper Elementary for two years.  When it was time for their third year in UE (Montessori grades are in three year increments) the tuition assistance was drying up and I would not be granted the outrageously generous amount of assistance for the following school year.  I was so tired of begging and was ready for free education.  I toured the public schools again, especially the magnet schools.  I was sickened by some of what I saw, particularly the stickers and stars mentality that still prevailed even in the 21st century and was nasty when I had to have my picture taken and ID submitted to visit a school. When sirens went off in one school for a practice Lock Down, I thought I had taken the wrong turn and was in Central Prison.  But, I gave in and applied to Powell Magnet school for fifth grade.  They were denied.  Shep and I made an appointment to plead our case in front of the school board.  We were given two minutes for each child with a timer tick, tick, ticking behind the steel faces.  It was pretty stressful and when I finished presenting my case for Sam and the timer bell rang, Shep was to present the case for Will.  He completely panicked and sat there stuttering trying to remember what to say.  I was flipping out saying, “Talk, talk!”  Oh man, I gave the poor guy hell after that.  Sorry.

They got into Powell and had one year in public school, on a school bus, eating the worst, “anti-Jamie Oliver food” imaginable.  They were now tracked to go directly into the very sought after, huge magnet middle school, Ligon.  For some unknown reason, I threw their names into the hat for the extremely popular small charter middle school downtown, Exploris.  For once, I did not pray to the School Saints or anything else and never thought about it again since the odds were slim to none that one could get into this school.  Of course, they both got in and short of my love affair with the Hampton Day School, this was probably my next all time favorite school.  They taught them to be downtown citizens, cared deeply about them, raised money for them to go to Outward Bound, had them working in senior citizens residences, gleaned Kale fields and tutored kids in a low income school.  It was everything and more in relevance that a school should be.

Which brings me to now.  Our suburban home is on the market, because we decided that we too, wanted to be downtown citizens!  So, I tried to register the twins for the downtown high school with no success.  I applied for a transfer and was denied.  Once again, Shep and I went and made our very compelling case before three ice women on the school board.  They were so completely emotionless and we were both so nervous that when we finished I giggled to them and said, “Hey, that was harder than auditioning for American Idol.”  They did not laugh.  They did not even smile.  A letter came saying that again we were denied but instead they would be offered a school I had never even requested.  They started high school there on Monday and today is the end of their first week.  It is fine. It is actually more than fine.  They are running in Cross Country, joined JROTC, plan to run for Student Council and in one week might have made more friends than any of my other kids.  For now, they are there in Sanderson High school.  For now, I have ended my quest for the perfect school and I may consider putting down my veining rod and my school snob status.

 Will running cross country 2013Sam running cross country 2013

The Thin Place- Finding the Divine While Here on Earth

Every once in awhile, I look into the eyes of another and feel this connection, or compassion, or mysterious warmth that seems to be similar to the feeling referred to as the “thin place.”  I think of the thin place as a fleeting moment when heaven and earth come together and one feels this unusual closeness or knowing of God.  It is a spiritual feeling, but in a way, it is a scientific moment as well.  And, most often the beholder of these connections, are not necessarily religious or spiritual. 

Most of the times I have had this unusual experience it has been with the elderly.  The long depth of experience, of pain or suffering, of knowing the soul deeply, exists more often in those who have lived a long life, and less often amongst the newbies. 


Probably one of the most distinct times this happened to me, was with our neighbor in Hampton Bays, Long Island. As the mother of two small children, I was often isolated and lonesome in a town that really only came alive in the summertime.  This was before the huge exodus of New York City families had decided to move east to live year round in harmony with nature.  Back in the early eighties, there were few of us trudging through winter. 


Our neighbors were an older couple with a fiercely opinionated and brilliant woman named, Bea and a gentle giant of a man who was as brilliant but in a kinder, softer way, whose name was Greg.  They were both a great support to us and were perfect role models of grandparents to our family as it grew.  From the first time I met Greg and looked into his accepting, loving and non-judgmental eyes, I felt something very special.  Bea and Greg both became very dear friends, as did their three daughters, who we remain close to now.  But, Greg spoke volumes to my heart and I found it so interesting that although he was a Jew, he was really without any faith in God or a higher power. And yet, I found him to be the most spiritual connection I had ever encountered. As he loved each of us and shared his knowledge, generosity, praise and acceptance of us, we felt enveloped.  When he died, it was such a huge loss to us all that I actually named my fourth son, Gregory.  He died too though, which is an irony unto itself. 


My husband, Shep had an aunt who was simply called, “Auntie.”  From the first time we met, and I was the nervous new girlfriend, I felt that unusual feeling.  Her eyes were ice blue and she was a loving and simple sort of woman.  When I purchased a very inexpensive and plain cotton wedding gown and she offered to sew pale blue ribbon on it, I also knew that this woman was one of those from the thin place as well.  She gave to everyone and though she had never born children of her own, she loved and supported her nieces and nephews in a way they desperately needed.  Though I cannot say I ever got to know her intimately, I can say that she rated one of those spots in my God-like people collection. 


Last Friday night, we were invited to the high school graduation celebration of the daughter of a dear friend of mine. I was honored to be invited and happy to celebrate this sweet girl’s rite of passage, but I was excited to be meeting Eileen once again.  Eileen is the very Irish mother of the graduate’s dad whom we have known for years.  I have only met Eileen a few times, because she lives on Cape Cod and is ever so proud of that status.  She loves to refer to the “hah-bor” which is both a delight to her and a privilege.  In the handful times I have met Eileen over the years, she has always acted both happy to see me and anxious to catch up, as if I had some important information she was waiting to hear!  Clearly a devout Catholic and despite being a single mom, (following the early death of her husband), Eileen has mothered her four grown children well and remains well attached to each of them. She has had some very difficult passages in her life and when we sat close and I said that I too have had some trying years, she acknowledged this as she had before. “What is it,” she asked, “that you think got you through?  Was it your faith?”  “I’m really not sure” I responded, “Something or someone though, kept pulling me along and it was mostly feeling like I had to hold on for something better. There were times I was furious with God and times when I felt I had no other option than to hand my faith to him or give up and die.”  I have felt this slight connection before, but this time I was sure.  I watched her pour her love out on her children, but moreover, onto her grandchildren.  She and her graduating granddaughter, Emma had gone to get a manicure and pedicure earlier in the day and her 92 year old fingernails were sparkling pink!  She was glowing with pride over Emma and when she told her repeatedly how much she loved her, it made me cry.  We enjoyed our short time together once again but when I bid her adieu and looked in her Irish blue eyes, there I had that feeling again that I was close to the face of God. 


One of my more obvious candidates has been, Bishop Michael Curry who is the Episcopal Bishop of North Carolina.  Not only does his message never fail to motivate me, make me think deeply and cause me to commit to being a much better person, but, his sheer passion always brings me to tears.  For me, it is often less about what he is saying, than the way he is saying it.  He can literally fly around in a dramatic dissertation of thoughts about being a “crazy Christian” as he says, or he can come to a barely audible whisper in reverence of a thought.  He is a “black preacher” with the cadence of Martin Luther King Jr one moment and a Harvard English professor in the next.  It is not his profession as being one working more closely with God that causes me to nominate him in my list of those who bring me to the thin place with God. Rather, his sheer excitement and joy and commitment to a better life that make my heart jump.


Then, there’s Nancy.  Nancy is a deacon, she was a hospice nurse, is a mother and grandmother, a spiritual advisor and strictly by coincidence, my next-door neighbor!  Obviously, Nancy has held some very pious and noble positions.  I get the feeling that when one works as a hospice nurse for a while, the amount of gratitude and adoration from suffering family members can be effusive.  Yet, Nancy never seemed to let that go to her head in any way.  Nancy has suffered for sure, in her lifetime, and her losses are many.  She is a deeply religious and spiritual woman who even has a kneeler in her bedroom and she owns a jewelry collection of crosses that might rival the shop in St. Patrick’s Cathedral, in its sheer volume.  I have tried to write about Nancy before and yet, never very successfully.  She is elusive in a way and yet, in juxtaposition, she is also one of the most grounded beings I have ever known.  She is even a Yogi!  Nancy’s mothering is with a path of non-judgment that I find phenomenal and for me, unattainable.  She is open to ideas and different ways of thinking in a truly liberal Episcopalian style.  Nancy listens closely and waits till one has exhausted a particularl diatribe before she comments thoughtfully and carefully.  She has boundaries that are so clearly drawn that sometimes it can be a challenge to completely respect them and yet, there really is no risk because she will let you know exactly when you have crossed them!  People are happy to see Nancy.  Nancy is happy to see them. She has a southern “Hiiiiiiiiiiiiiii” that can go on for several syllables and makes one feel most welcome.  Just walking with Nancy sometimes can bring you to the thin place, having tea with her is like a blessing and having her as my friend, is yet another connection to God on earth. 


Then, there is Lesley.  I met Lesley at our church when my sons were quite young. She became a life connection and lifesaver when my twins were born and I was in my late forties!  Lesley is this unusual woman, who sees a need in others and actually rushes to fill it.  It is really a most unusual thing and Lesley will drive any length, go anywhere, and do just about anything to make ones life easier, longer, or more palatable while here on this earth.  Lesley came to be with my twins at least once a week and she would take them out for stroller walks and for short trips to zoos, parks, and lunch, just so that I could survive.  I, in turn, would be able to take a shower, lay down, read, write, email, or just sit and stare into space from the sheer exhaustion and frustration I felt from spending 24/7 with twin babies at my age. I often think I would never have made it without Lesley and her complete selfless way of giving.  I believe Lesley came into my life through an urgent request of the Holy Spirit who said to her, “Quick, please go and save this desperate woman before she hits the floor and we are unable to pick her up!”  Lesley has helped so many whether they were lonely in nursing homes, in difficult situations, depressed, anxious, or just in need at the time.  The other day, Lesley came with me to help a young mother who is ill and needed a full day work up at a hospital near by.  She had never even met this mom.  She came because I described the need to her and while she cared for the baby while mom was in appointments and walked that baby up and down the corridors it was truly a moment full of grace. When I said to Lesley, “Why do you do the wonderful things you do?” she responded to me in her delightful British accent, “Oh Ann, we do what we can do, don’t we?” 


Some of us do, some of us don’t. When I meet those who do, I come closer and closer to the divine. 






The Unfolding of a Family of Origin Struck by Disease


When I first met Susan working at JFK Airport’s Keyhole Boutique, she was intriguing but unusual.  We did become friends and we both lived in apartments in Queens not too far apart.  As far as I could tell, Susan didn’t have other friends although, she did have one good looking, “bad-boy,” scary boyfriend.  Tommy was a corrections officer in Riker’s Island prison and carried a gun with him at all times.  I don’t think I ever really spoke to him despite our being together on several occasions.  He was far too intimidating and rough around the edges, plus, he cocked that gun a little too often for my comfort.


Susan’s mother, Ann and younger sister, Holly lived in the family home in Rockville Centre, Long Island.  I called there one time when Susan was staying there and Ann answered the phone.  I could not understand her garbled speech and I concluded that she was drunk in the middle of the afternoon.  When I came to pick up Susan I witnessed something I had never seen before.  Ann was in constant movement and could not be still.  Her arms flailed around as she tried to bring food to mouth.  When she tried to walk, she was all over the place and off balance and again, I struggled to understand her when she spoke. I wondered why no one had prepared me for seeing this and why there had been no explanation in advance.  That was the one and only time I saw Ann, who as it turned out, would have been my mother in law.  I am the second Ann Smith in the family!


The reason why I never saw Ann again, despite eventually dating her son is because Ann wound up in Pilgrim State Hospital.  There was no grimmer place for the mentally ill to reside. But, at the time in New York, there were no other choices either.  Ann had been diagnosed with Huntington’s disease and this was a gruesome, degenerative disease defined by Wikipedia as a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and psychiatric problems. It typically becomes noticeable in mid-adult life. HD is the most common genetic cause of abnormal involuntary writhing movements called chorea, which is why the disease used to be called Huntington’s chorea.


I was both confused and shocked to see this and wondered what the ramifications were for Ann’s children, my friend Susan, my about to be boyfriend Shep, and their young sister Holly.  From what I came to learn, placing Ann in Pilgrim State was the most wrenching thing that Shep ever had to do.  He hated the entire experience and would be riddled with guilt over it for the rest of his life.  These kind of decisions typically came to fall upon his shoulders and though he did not come to the conclusion lightly, he did feel it was necessary in order for Ann to receive some care and medical treatments.  In the end, Ann choked on a cup of coffee and died at age 56 in Pilgrim State. This is often the cause of death for Hungtington’s victims.


This weekend, we are journeying to Grayson, Georgia to visit Shep’s sister, Susan.  Susan is the oldest sibling, Holly is youngest and Shep is the middle child, though he has always played the role of oldest.  Huntington’s is hereditary and each offspring has a 50/50 chance.  This is not the case if the parent does not have the gene, as then the disease does not continue in that arm of a family.  So far, Shep and Holly have not had any symptoms related to Huntington’s, but the possibility still remains, through it shrinks as time goes on.  Susan has full-blown Huntington’s in middle to late stage and the disease is progressing albeit more slowly than it did with her mother.


By the sheer grace of God, Susan has the most wonderful sister in law, Genia who has taken her into her home over the last few years and cared for her in a most generous and loving way.  They are companions of sort , which seems to have mutual perks but I suspect the benefit list is much longer for Susan than for Genia. Susan’s in laws have also been amazingly caring and solicitous of her needs.  Her speech is becoming more and more difficult to understand and she falls repeatedly.  Currently, she is in a rehab facility aka, nursing home because she forgot to use her walker and broke her shoulder, her eye socket and her nose in three separate falls.  Her movements are unceasing and watching her eat or drink can literally have you on the edge of your seat. I have ordered some weighted eating utensils for her in the hopes that they may help.


Susan had a request several months back.  She said she wanted to have a family reunion with her entire family “one last time.”  So, we all made plans to make the 7+ hour trip with all of our kids coming from North Carolina and Holly’s family and grandchild driving 11+ hours to Georgia.  Because Susan fell and ended up in Rehab, she is now,  not allowed to leave due to insurance regulations.  So, all plans deteriorated and as of now, Shep and I and Holly and Joe are the only ones headed to  Georgia.  We will head to Susan with the disappointing plan of having to spend our entire visit in the Nursing Home.  Susan makes off putting comments like, “I hope one of those falls takes me out” so we know that she will not tolerate her condition for too much longer, though one never really knows, of course.


There is irony and wonder in the fact that the only sibling who did not have any children, is the one who ended up with the gene for Huntington’s and the resulting disease.  There is sadness and heartbreak and yet joy in knowing that the love in a family does prevail and we will embark on this journey to show Susan she is loved and cared about. God speed for us all.