Create Your Story

“The same way that you are the main character of your story, you are only a secondary character in everybody else’s story.” ~ Don Miguel Ruiz

One of the first teachings Don Miguel Ruiz imparted on me was the understanding that every single human being is an artist, born to create.  The greatest art we each create during our time, is the story of our life. This learning, though profound, took time to come to understand.  My life is really just a story, created by me and told from my perspective. It is not even real, it is merely my version of reality.  In my story, I created the main character of Laura.  Following Miguel’s teachings, this character I have created represents everything I know and changes and evolves as I learn and grow.

My story was initially created as I was growing up.  During that time, everybody had opinions about who I was and who I should be.  My parents, grandparents, teachers and friends all had images of who I was and all wanted something different from me.  Everyone wanted me to be what they thought I should be and as most children do, I tried hard to live up to those ideals.  At some point though, I came to the realization that I had different ideas about who I wanted to be.  It was then that I began to question and challenge the norms and expectations imposed on me.  I grew up in a time of questioning the establishment, so it was not unusual that I would create my story differently from the one created for me by others.

During my schooling years, I was in accelerated classes throughout elementary, middle and high school.  I was a straight A student, weeded out and placed in what today would be labelled a gifted program.  Yet, as a girl, I had to sit through career classes geared toward secretarial work and take cooking and sewing classes to prepare me to be a housewife.  I was for all intents and purposes invisible, never asked to contribute my thoughts about issues, merely asked to memorize and spit back what I learned.  My parents hoped I would attend college like my two brothers before me, but were also saving for my wedding fund.  For all my academic success, I was the most disengaged student, especially in my high school years.  Yes, I maintained a high average and was thought of as the least likely to struggle.  But, I realize now I was just a passenger in someone else’s version of my story.  I never felt engaged or empowered by school, or my studies.  Rather, I took in what was offered passively and gave back what others wanted from me.

When I got to college, I felt something start to shift in me. It was my literature classes, as well as sociology and history that ignited in me desire to take back control of my story.  I was asked to interpret and contribute my thoughts on what I read, to discuss with others in ways we never had before in my previous schooling.  It was then that I found my voice and the main character Laura took a different fork in the road.  You see, Laura was not born to be passive, she was born to be a leader and I alone had the artistic control over the creation of her story.  The shy, passive girl had reclaimed her place as the main character in the story of her life.  No longer would she try to live up to the expectations of others, for she had her own expectations and the ability to work toward living up to those.

Throughout various times in my life, I have lost my way and my realization that I am Laura, the main character of this life.  I have let the opinions of secondary characters impact my thinking and forgot that they are merely the main characters of their own story, not mine.  Now, as I process the loss of my mother, I am revisiting the story of Laura through family photos, letters and memories.  Sometimes, I don’t recognize this character I’ve created.  Sometimes, I still feel the pain of some of the paths she’s walked.  Most days, I wonder, as I reread this story, how much of it would I change, if I could.   But today, I know that all I have is this moment to pick up my pen and begin again adding to the story of Laura, for it is time to begin creating the next chapter.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Long Goodbye

Your Mother is always with you.
She’s the whisper of the leaves as you walk down the street.
She’s the smell of certain foods you remember, flowers you pick and
perfume that she wore.
She’s the cool hand on your brow when you’re not feeling well.
She’s your breath in the air on a cold winter’s day.
She is the sound of the rain that lulls you to sleep, the colors of a
rainbow. She is Christmas morning.
Your Mother lives inside your laughter.
She’s crystallized in every teardrop.
A mother shows every emotion ………. happiness, sadness, fear,
jealousy, love, hate, anger, helplessness, excitement, joy,
sorrow… and all the while, hoping and praying you will only know the good
feelings in life. She’s the place you came from, your first home, and she’s
the map you follow with every step you take.
She’s your first love; your first friend, even your first enemy, but
nothing on earth can separate you. Not time, not space…not
even death!

When Ronald Reagan was diagnosed with Alzheimer’s, he penned The Long Goodbye, a letter to the country.  He talked of the burden his wife Nancy would face in the coming years and you felt his love and concern for her.  One can’t really imagine the devastation of this disease until they live through it.  Personally, I didn’t see it as a burden, but rather the last loving gift one can give to their spouse, mother or loved one.  This burden is really borne of love and the loss is immeasurable.

Alzheimer’s disease robs one of their memories, their ability to communicate, their ability to do any of life’s basic functions.  Even worse, it causes one to lose their loved one over and over again across a long period of time.  My mother’s journey with this disease lasted over ten years.  The past six years, she was unable to speak or recognize any of her family.  She no longer smiled at us, attempted to speak, or get a glimmer of recognition in her eyes when we greeted her.  She was comfortable, cared for and well loved.  She was at peace.  Sometimes, I found comfort in the fact that she no longer was aware of what was happening to her, as I knew how much that terrified her.

Alzheimer’s disease causes one to say goodbye to their loved one, long before they actually leave.  To me, that was the worst part.   To have your mother sitting next to you, knowing she isn’t really there, is by far the worst pain I have ever endured.   You desperately seek that one glimmer of recognition when you greet her and long for the day she will smile, or look at you like she used to.  But, sadly that day doesn’t come.  What comes are long days of sitting next to someone who really isn’t there, your heart breaking over and over again.

Right before my mother stopped communicating, I had surgery on my ankle. It was the first form of sickness I went through without her love and support in my life.  I vividly remember crying over that loss.  One weekend, dad brought mom out to my house with him for a visit since I couldn’t go to visit them.  My mother was sitting on the couch in my family room that day.  When I stood up to go into the next room with my crutches, I remember her suddenly standing up and saying, “You need help?”  Lord, that moment meant the world to me.  Even deep in the depths of her new world, she still was trying to help others, to help me.  She was still there for me after all.

These past few years, I visited my mother at her nursing care facility on weekends, despite the two hours of inevitable traffic I faced each time.  There was no recognition of me, or engagement as I sat and talked with my father.  The only one she responded to anymore was my father.  She sat there with us always, but was no longer able to even try to engage in our conversations.  Each time we visited, the immense loss was like a slap across the face and heart.  Each time you walked away, you wondered if it would be the last time you were together.   Sadly, the last time I sat with my mother was early March, a full month prior to her passing. Sadly, I didn’t get to say goodbye to her or be with her when she passed.

When COVID first hit New York City, we heard repeatedly that the most vulnerable population was the elderly.  We heard our governor talk lovingly about his elderly mother and the need to keep her safe.  How fortunate for him that he has the ability to do that.  How fortunate for him, that his own mother was not in the hands of his policies as so many others were, including my mother.  How fortunate for Matilda, that she was exempt from the order his Commissioner of Health put in place, that ultimately caused the death of over 2,000 people identified as the most vulnerable population.

My mother’s death is hard for me to process, despite losing her over and over these past years.  My mother was one of the innocent victims of a policy that makes no sense.  My mother did not die from Alzheimer’s disease, or any other natural cause.  My mother died from COVID19, contracted at her care center.  My mother died when she was infected by a patient brought into that center due to these mandates, as did at least 6 other patients on her floor.  There is nothing I can do to change this outcome for my family.  But, there is something I can do to draw attention to the fatal flaw of this order in effect.  The order put forth by our Commissioner of Health, supported by our governor, is amazingly still in place despite this enormous loss of life.  In fact, Governor Cuomo seems to be doubling down that it remain as written.  His refusal to revise the order, coupled with the shifting of blame infuriates me daily.

I have lost my mother due to negligence on so many levels.  I have been met with callous remarks about how mom, living in a private room in a care center on lock down from the first week of March, likely didn’t get the virus from the patient that arrived the week before she got sick.  All of that to me is deflection.  Yes, she could have been infected from the one aide that worked with her.  Yes, lack of PPE and a plethora of other possibilities exist.  But, that does not change the fact that this order as written is flawed and poses extreme, unnecessary risk to this country’s most fragile population.  It is like throwing a match in a dry forest and blaming the store that sold the match, or the forest itself for being so dry.  The point is your order was the match that sparked this fire.

I am here as a motherless daughter, pleading with our governor to have some common sense.  To truly reflect on this order and change it.  To search his heart and ask himself,  if Matilda was in a care center, would he be able to sleep at night knowing that COVID patients were mandated to be admitted, despite an ability to truly keep the other patients safe.  Please take a moment to send an email requesting this order be reviewed and revised.  Do this in memory of my mother, Else Hess and the over 2,000 others who have perished in nursing care, alone, confused and unnecessarily.

If you would like to help others avoid this fate, please write to Governor Cuomo and the Commissioner of Health in New York at the following addresses:

Oxiris Barbot, NYC Commissioner of Health – Email Commissioner of Health

Howard Zucker, NYS Commissioner of Health – Email Commissioner

Andrew Cuomo, Governor New York State – Governor’s Email

The order came from Dr Andrew Zucker and Governor Cuomo.  If you are in NYC, please also reach out to your local politicians to report this abuse of our elderly population.

For those who have not read the order as written, here it is:

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The Notebook

Anyone who met my dad these past ten years would inevitably ask him the same question, “Did you ever watch The Notebook?”  He always replied, “No.”  They would then say, “You really should.”  On a rainy night in early December, I met my dad for dinner after a work event near his home.  As we were waiting for our dinner, dad told me he had watched the movie.  He said he wanted to know why everyone he met asked him if he had.   I was surprised that he watched and actually sad that he had to sit through that.  I asked him what he thought about the movie and he said simply, “I get why they wanted me to see it.  That is what I want.  I want to die like that and if I could, I would.”

Life in COVID19 times had other plans though.  Sadly, his beautiful wife of 65 years, my mother, passed on April 8th alone, without him by her side.  Losing her has been hard, knowing she was alone when she left us has been harder.  Not being able to give her a proper funeral, though he made it that for her despite just him, my brother and I being the only ones in attendance, the final insult.  COVID19 knows no boundaries and cares not for anyone it takes.

Sadly, my mother was living in a care center these past few years.  Throughout her illness, my dad cared for her himself, alone in their home of 60 years.  He lovingly did everything and anything needed without asking for help.  When we hired an agency to provide in home care, he still did everything for her including washing, diapering, cooking, feeding and anything else needed.  The aide was amazing, but merely provided company for mom and allowed dad to have some time to go shopping, or share coffee with friends at the local coffee shop.  He refused to allow anyone to provide the intimate care mom needed to protect her dignity.

When home care was no longer an option, as mom had several falls within the home and dad and the aide were unable to get her back up, it became time to consider nursing care.  We put mom in the hands of a very small nursing facility.  This became dad’s home as well, as he was there every morning before 9 to feed mom breakfast.  Despite being in his 80s, dad would walk the mile and a half, or ride public transportation to get to the nursing home daily.  He sat there every single day until late in the afternoon, despite the fact that mom was in good hands, unable to communicate anymore and sadly didn’t know who he was. None of that mattered to him.  He signed up for better and worse and he loved her more than anything.  He never came to family holiday dinners because he stayed with her as that was where he wanted to be and would never leave her side.

Dad loved visiting with mom at the nursing home and loved the aides and staff that worked there.  He thought of them as friends and treated them as such.  Sometimes I think dad thought he worked there.  He was there to feed mom her meals and helped push other patients in their wheelchairs if they needed help.  He sat with mom and talked to her as if she understood him.  He bought her new clothes all the time and personally washed all her clothing.  My mother loved to be dressed nicely her whole life.  You never saw my mom without her hair done, lipstick on and nicely dressed.  Dad ensured that this continued in nursing care.  Her hair was always clean, set and brushed.  She always had a nice outfit on and yes, even lipstick.  He made sure her nails were groomed and polished and treated her like the queen she was.

When COVID caused the nursing facility to lock down and not allow dad in, he was devastated.  I picked him up and had him come to my home for quarantine.  He was here when he first saw the Governor’s and Health Commissioner’s order mandating that nursing homes accept patients regardless of their COVID status.  We were horrified and scared for mom.  We called the NY Post, the paper dad has read daily for years, to ask them about this order.  The woman at the news desk said she knew nothing about it and asked my 89 year old father if he could prove what he was saying.  He responded, I don’t have the order here, but you can find it.  Can’t you look into this and do something?  That was on March 25, 2020.  That was well before over 2,000 people had died.

A few days later dad received the call we dreaded.  Mom had a low grade fever and her oxygen levels were low.  They wanted us to know that they had no access to ventilators if needed and should they send her off to and emergency room.  I asked if they had COVID positive patients at the facility, or positive staff members.  I was informed that they had one newly admitted patient that was COVID positive on her floor.  I asked them to test my mother and they did.  Mom was positive for COVID.  Sadly, I drove my dad to the nursing home.  They suited him up in protective gear and allowed him one visit with mom.  I was not allowed in to see her, nor was my brother.

The following week was a series of ups and downs.  Mom’s fever came down after being placed on medication.   She was able to eat her food and swallow.  We were hopeful she would recover as we caught this very early.  Mom also had a private room at the nursing home, that we had paid for as dad had always wanted her to have her dignity and privacy.  We thought this isolation would prove to be her saving.  Sadly, this was not to be.  On April 8, my mother passed alone in her room.

This love story had no Notebook ending, one where my dad was allowed to die next to the love of his life.  This love story of 65 years, during which my parents never spent a day apart, despite Alzheimer’s disease and its devastation ended without him even being present.  This love story had an ending that wasn’t deserved.  My mother did not deserve what happened to her.  She was not sick, she had Alzheimer’s.  She had no underlying conditions and she was not at the end of her life.  She was placed in the hands of a nursing home, which due to the mandates of our state was unable to save her.  She was in a sense murdered by an order that our governor cares so little about and continues to pretend he has no awareness of.  I think we should rename that order Matilda’s law as a legacy to his mother.  I wonder if she is proud of her son’s actions.

My mother and father were married for over 65 years.  Neither of them deserved what happened.  Nor did the other 2,000 other patients, and families, that have died in nursing care.  Sadly, nobody seems to care about this tragedy, nor will they take the story.  Only after the death toll had risen did the NY Post report on this story.  Many papers and media outlets still have not.  It is my hope that we can draw attention to and get this order changed.  I ask that we do this in honor of my mother Else Hess, who deserved to die surrounded by the love and care that she had for her entire life.  I ask that we do this in honor of my dad George Hess who struggles to accept that he was not able to be there for her when she needed him most.

If you would like to help others avoid this fate, please write to Governor Cuomo and the Commissioner of Health in New York at the following addresses:

Oxiris Barbot, NYC Commissioner of Health – Email Commissioner of Health

Howard Zucker, NYS Commissioner of Health – Email Commissioner

Andrew Cuomo, Governor New York State – Governor’s Email

The order came from Dr Andrew Zucker and Governor Cuomo.  If you are in NYC, please also reach out to your local politicians to report this abuse of our elderly population.

 

 

 

Isn’t it Ironic

And isn’t it ironic, don’t you think?
A little too ironic, and yeah I really do think.
And yeah, well, life has a funny way
Of sneaking up on you
And life has a funny, funny way
Of helping you out
Helping you out

I started this blog, and cooking, several years ago to help me cope with the process of losing my mother to Alzheimer’s.  The goal was never to preach, tell people how they should live or pretend that I knew the answers.  The goal was to find healthier outlets for my grief, reclaim my health and break the cycle of this disease in my family.  Isn’t it ironic that in my grief over the actual loss of my mom, I’ve returned here all these years later much the same as when I first started.

The words, stories and recipes shared here serve merely as documentation of my personal journey through grief.  My personal memories and tales have no purpose really to anyone but me.  Though so many have read and commented, my intentions are purely to capture the stream of emotions flowing through me.  I say all that as a disclaimer because this loss has taken a toll on me.  As Baron Baptise says, sometimes we have to fall apart to come back together again.  That coming apart is the space I’m currently trying to move through.

The past year has been a difficult one for me health wise.  Recovering from my last femoral stress fracture was not as easy as the other two.  My body just wouldn’t cooperate and wouldn’t heal.   Then, just when I was able to get out and walk and ultimately start running again, I took a bad fall.  This fall left me with injured ribs, an injured peroneal tendon, put me in a boot for 8 weeks and unable to walk without pain for months after.  The effect of this on my physical and emotional health has been tough.  Weight gain, coupled with loss of the ability to engage in activities I love, has been emotionally draining.

Isn’t it ironic that the loss of my mother would be the driving force that pushed me out of this state of mind.  A loss from a deadly virus that is truly so painful, I should be driven to crawl into isolation, has forced me to take a hard look at so many things. Personal relationships, that have long been broken, have new light shed on them and will be shed.  Habits that linger, like people pleasing and taking on other people’s shit, are out of their hiding space and ready to be seen for what they are.

While I have no answers, I have a new perspective on why I’ve taken on guilt for calling someone out when their actions are hurtful to me.  I was raised to be in service of others.  I was raised to put other people’s needs before my own.  I was raised to not judge others.  All of these are truly wonderful qualities and I thank my parents for instilling them in me.  But, in my quest to not disappoint or hurt others, I’ve allowed others to hurt and disappoint me.  This is where my work lies, in the exploration of why.

During this global pandemic, I am taking time to do some personal work for myself.  I need the connection with others who have suffered loss to this virus.  Together, we are engaging and supporting each other through Baron Baptiste’s 40 day program.  I have started cooking again and thankfully walking without pain.  I am trying to gain some clarity on the places where I am stuck and hope to find healthier ways to deal with my grief.

Speaking of cooking, isn’t it ironic that I’ve finally after all these years mastered the art of making German Potato Dumplings on my first holiday without mom.  On Easter Sunday, with no family here to celebrate, I figured out how to make these pesky dumplings that have been the bane of my holiday meals for years.  There was a missing ingredient, one that my mother never used.  Gone is the farina my cousins suggested, that never worked for me.  And, in its place is potato starch, a truly magical ingredient that has solved my problems once and for all with the texture of my dumplings.  I’ve made them twice since Easter, as I’m truly excited to have this childhood item back in my cooking repertoire.

German Potato Dumplings

  • 5 lbs of Russet potatoes
  • 2 eggs
  • 11/2 cups all purpose flour
  • 1/2 cup potato starch
  • Salt
  1. Boil potatoes with skin on until soft
  2. Drain and cool
  3. Peel potatoes and run through potato ricer (manual one is fine)
  4. Place in refrigerator for several hours
  5. Remove from refrigerator and add all ingredients .
  6. Knead with hands until it forms a dough like consistency, adding additional flour as needed.
  7. Toast bread and cut up into 1 inch squares
  8. Form potato into balls, placing a piece of toast in the center of each one.  Balls should be slightly larger than golf ball size.  My mother liked baseball size.20200412_141628
  9. Drop potato dumplings into boiling water and cook until they rise (approximately 10 minutes depending on size)
  10. Drain with slotted spoon and serve immediately with gravy.  We had roast pork and potato dumplings with ours and turkey the second batch.

 

This is Us

I read an article recently about how most children, when it comes time, don’t want any of their parents “stuff”.  There’s a minimalist movement going on and this stuff is seen as clutter and junk.  While I also like to live a very minimalistic life, there are some “things” I just won’t part with.  I don’t see these things as junk, or clutter, rather I see them as a way to tell my story and that of those who came before me.  Yes, most of these items are really just “things”.  Yes, most of these items do create some clutter in my home and require care and cleaning.  But, I see them as a way to visit with my family and keep those who have come before me close to my heart.

Today, on this rainy Sunday morning, my husband and I set out to wash all the items in a large wall unit in our living room.  It’s time to get ready to host Christmas dinner and to deep clean the living and dining room.  We barely use these rooms anymore, as it’s just the two of us.  Washing each item today took me on a nostalgic journey down memory lane.  As my husband carried each piece to me in the kitchen for hand washing, he began lamenting that we have way too much stuff.  I tried to explain to him, though I’m not sure he got it, that each item has a story connected to it.  I even tried to tell him a few of the stories to prove my point.  He smiled and continued carrying things back and forth for a few hours, not convinced but no longer complaining.

When my grandmother, lovingly known as Nanny, passed away 30 years ago my dad called and said they were cleaning out her apartment.  He asked if there was anything specific I wanted to have.  I told him I really only wanted two things – her green piggy bank and her junior high school autograph book.

Those were two items that nobody else would want and truly the only things I wanted.  I wasn’t interested in her pots and pans, her furniture or television.  Rather, I wanted a piece of her story, her journey through this life.  I wanted something that connected me to her, in a very personal way and would stay with me through my time without her.

When I was growing up, we didn’t need to wait for Christmas to see our family.  Most of my family lived in one apartment building on Seneca Avenue in Ridgewood, NY.

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A recent photograph of 932 Seneca Avenue. I can still see my Nanny at the top right window waving to us after we dropped her off at home after her visits with us.  

My Nanny and Baba had a apartment on the top floor.  Across from them, lived my Uncle George and Aunt Rose and downstairs my Aunt Catherine and Uncle Jimmy.  In the next building, lived my Aunt Rose’s family.  These were magical times, though we didn’t know it at the time.  Who knew that years later most families wouldn’t live like this, that this would be the exception, not the norm.  I spent most of my Sunday mornings at this apartment building visiting.  Many mornings we played Pinochle or Canasta and many mornings we just spent time together.  One thing I loved to do as a young child, was to pour out all the coins in my Nanny’s piggy bank.  I loved to sort and count the coins and tell her how much money she had in the pig.  Sometimes I helped her roll the coins to take to the bank and cash in.  My Nanny didn’t have a lot of money, so collecting change was a way she saved up to buy the extra things she wanted.  Having this piggy bank on my dresser, still holding some of her coins means the world to me.  When I look at it, I can still see myself as a small child pouring and counting as she and my dad sat in the kitchen sipping coffee and eating crumb cake.  I can hear her radio playing and her canary Chip singing along happily.

My Nanny also had an autograph book in her apartment when I would visit.  She never let me read it, or play with it, but I knew of its existence.  I am by nature curious and fascinated by stories from the past.  I love looking at old photographs and hearing about the people living in them.  I knew this book meant a lot to my Nanny, but just assumed it was the reminder of her youth that made it so.  When I received the book after she died, I spent time reading each entry.  Many are faded as the book is from 1928, but it struck me how similar the entries in this book were to those of today.  As I read, I imagined the people who wrote them, so young and full of life as they were setting out on their journeys.  I had no idea really who anyone in the book was, but as I saw multiple entries from someone called Wuff, I began to wonder who he was.  Finally I realized that Wuff was my grandfather and these were secret love letters he was hiding in her autograph book.  My grandfather was much older than my grandmother at 29, when she was just 14, scandalous really.  I believe he was hiding these notes in this autograph book so as not to be discovered.  How truly special this book is to me, even 30 years later.  I haven’t read it in awhile, but today as I took my trip back through time, I pulled it out.  I won’t share any of the personal notes, but here are a few of his playful messages.

Today, I wonder if nobody wants this so called junk anymore, who will carry forward these stories.  How will we preserve our past?  I know you don’t need a lot of stuff, but these personal items carry our stories.  Surely we can downsize these items, but do our children really need to throw them all away?  Maybe, we need to return to these days gone by to realize the importance of keeping our memories.  Having these trinkets helps me remember and tell the story of us.  I can touch each one and conjure up a memory of a person and a moment that was shared.  I hope that the generations to come can find a place for them in their hearts and homes, for if not many precious memories will be lost.

Here are a few trinkets I visited with today and the special memory attached.

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My dad gave me the Lladro on the left on the day my daughter was born.  It depicts the love between a mother and daughter, as well as my love of reading and the stories that connect us.  Lladro on the right belonged to my mother. It was bought by my dad when he was a young, beat copy working in Jackson Heights.  He came upon a store that sold china and Lladros and purchased many treasures for us throughout his career.
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A Lladro gifted to my by my brother after his trip to Spain.  While they were away I took care of their house so they purchased this for me as a thank you.  This was from the 1980s and in the height of my obsession with aerobic class and leggings.
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Housewarming gift given to my parents by my Nanny & Baba in the early 1950s.  This handmade pottery was used through their 60 year marriage for snacks and candy at any party my mother had.   Totally not my style, but I can still see it in its grandeur filled with love.  Mom cared for it lovingly as I do now.
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My mother loved to be modern and this vase was one of her first purchases as a new bride decorating her apartment in the early 1950s.
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One of the many equestrian awards my daughter won   This was won with her first pony, Spring, for Pony of the Year.
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My daughter on Christmas morning when she received her second horse, Blue Whisper.  My parents and I went down to the barn with her on a very cold December morning.  She was in fourth grade at the time, about 9 years old.   These two horses loved each other and gave her such joy and success in the horse show world.
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Cathy and Blue Whisper at an Eventing competition.  This picture captures his fire and her joy riding and competing.

I’d love to hear about items that carry special meaning for you. Feel free to drop me a line below and share your story.