My mother has been my number one source of inspiration and creativity since I was born.

ABOUT MOM
My mother was best known for the way she carried herself with elegant style and class. She was the most genuine beauty, inside and out, caring, and extremely generous and giving. Highly intelligent and a wealth of common sense and grace. More than anyone, everything she did was for me; her love was boundless. And mine for her. Her laugh would light up a room full of people.

From a young age, she had an interest in all creative mediums. From teaching herself to knit and sew, she would create incredible works of custom clothing, gorgeous hand-knitted and beaded sweaters all from her imagination. She created the tagline “Susan’s Sweaters Will Leave You In Stitches!” All of my clothes as a child, and nearly all of my Halloween costumes were created by my Mom.

From self-taught cooking and baking, she presented miracles on the table most nights. On other days, Dad was happy to take us all out to a nice lunch or dinner spot. Especially Fridays and Saturdays. She was the most exquisite cook (even though I would complain about it always being chicken!) and I would eventually learn all of her best kept secrets. Our kitchen had every tool from and essential from Bloomingdales and the like, that my Mom used to create the greatest meals and presentations.

Once a cover model for high fashion magazines, her beautiful physique was her signature, so often adorned with the most tasteful clothes.

But above all of her most loved fashions was her most impressive collection of shoes. For a long time, she worked in Charles Jordan in the Bal Harbour Shops of Miami. She loved all brands and carried herself as though she were skating on glass. The sound of her shoes in the morning and her footsteps as she walked would be the fondest memory I didn’t realize I took for granted.

My mother could paint and draw beautifully and was so skilled with her hands. I received my drawing abilities from her and am utterly grateful to have received this particular trait from her.

Mom was creative with interior design, loving modern furniture, colors, and trends.

Mom was also an expert at Crossword puzzles and would complete many thick books, often with help of a Crossword dictionary for the new answers. She enjoyed learning and teaching herself things she didn’t know. Her quest for knowledge and self-betterment has always been inspiring to me, too.

One of her most wonderful abilities was being able to throw memorable gatherings at our house, full of happy, laughing people. She was very social and enjoyed bringing people together. She was an absolute delight and everyone enjoyed her company, her joke-telling, and her quick witty puns. She taught me how to first leave out appetizers and hors d'oeuvres for guests that kept their mouths watering for the main course. All of the dishes, silverware, place settings, centerpieces, tablecloths, napkins, and decorations all matched the theme of the evening; even down to the little paper labels stuck in each dish! She loved a glass of Kendall Jackson Chardonnay to accompany most meals.

Mom was the heart and soul of the house and my Dad and I could have lived a thousand lifetimes and never had such a wonderful life as the one we had when she was here. I am determined to continue writing even though I can barely see through my tears.

THE DAY EVERYTHING CHANGED
About 5 years ago, in 2015, Mom and I were in her bed watching one of our favorite shows. Maybe America’s Got Talent. She seemed annoyed that her index finger kept twitching and admitted it had been hard to sleep that week because it wouldn’t stop. About a week later, I came home and she asked me to sit on the couch with her and Dad as she had some news to tell me. My Mother and I were so close, that I could instantly tell from her tone and just the look on her face, her utter bravery as she knew what she was about to tell me would change our lives forever. My ability to read her mind would unknowingly be my Mother and my greatest asset, as she lost the ability to communicate to anyone else around her, and I became her interpreter, and her advocate.

WHAT IS ALS?
ALS aka Lou Gehrig’s Disease aka Amyotrophic lateral sclerosis was made more aware with the Ice Bucket Challenge, though living with and caring for someone with this disease would give me 100% understanding of the entire physical and emotional process.

Definition: A nervous system disease that weakens muscles and impacts physical function.In this disease, nerve cells break down, which reduces functionality in the muscles they supply. The cause is unknown. The main symptom is muscle weakness and atrophy. Medication and therapy can slow ALS and reduce discomfort, but there's no cure.

POST-DIAGNOSIS
My Mother was diagnosed (luckily very early on) with ALS. She also had developed a lung disease within the last 25 years of her life, though she had never smoked one cigarette in her life.

At first, there were simple losses of ability, such as not being able to pinch a ketchup bottle or lift it between her thumb and index finger. No amount of exercise would ever bring her muscle strength back, but only slow its deterioration.

One Thanksgiving, a big beautiful turkey was in what Mom would call her “magic pot”; a huge pink Pyrex casserole dish that was a big secret in making the birds super juicy each year. Her prized dish and the bird inside slipped from her grasp as she pulled it out of the oven. She was not hurt, but this moment would represent the end of one of the greatest gifts my mom possessed: her ability to physically create in order to give. From this point on, all of her giving was verbal, in how she still showed concern for others, especially the women who helped care for her. She cared just as much about their well-being during this process as much as her own, if not more. She was embarrassed by her helplessness and was extremely private about her health statuses. Even distant family members would only hear snippets of the overall care, and not so much the day to day struggles we endured with her.

As her physical and speaking ability diminished, she eventually lost all movement in her left hand and left arm. For a while she could drive, until the disease moved to stiffen and incapacitate her legs.

After three years of her diagnosis, she went from needing a walker, to then a wheelchair, and then 24 hour in-home private care. In 2019 and 2020 this was paired with palliative and hospice care.

I moved back home to do whatever I could for my mom, while working overtime hours at my job, juggling my friends, social life, and love life.

THE FALL
One year before her passing, almost to the day, one of our temporary care-takers carelessly pulled my Mom down by her hand, causing Mom to lose her balance from her walker, completely unsupported and fell onto the dresser, fracturing her T9 spine where her lungs were. Compounded with a breathing illness where she was needing her nebulizer sometimes 4 times a day, plus ALS, this was the most pain and suffering I had ever seen a human being in, and this was the most pain I had ever felt for someone, especially since this was my Mom. I was at work on a Saturday when I got the call that there were ambulances at my house.

Mom was admitted to Boca West and then Holy Cross in Ft. Lauderdale. She had about two weeks of bedrest until she was able to attempt assisted walking with high risk of falling. Unfortunately, only after just about a week of walking, she would then develop pneumonia and move from the rehabilitation floor to the palliative/hospice floor. Eventually she was permitted to live the rest of her life at home, with hospice on call.

UTTER SUPERHUMAN STREGTH
When I say this is the strongest person I have ever met, imagine a body builder with no muscles and the heart of a lion, unable to feed herself, unable to walk, and now a significant declining spike downward in ability to form words (caused physical deterioration of the throat muscles, not mental ability). As Mom would lose her speech ability, people misinterpreted this as a loss in cognitive ability. This is perhaps one of the saddest side-effects to the people in close proximity (aides, caretakers, doctors, nurses, and even family members). Some people even speaking louder as if she was too incompetent to understand them. Mom and I would just look at each other like “It’s not their fault they don’t fully understand her abilities, the most intact being her intelligence and memory.” I was the last person on Earth who could understand my Mom the best. I knew her facial expressions even though they had altered. I knew every roll of the eye. I knew every moan and sound uttered. I knew them because I had been with her every day of her life at the end (and living at home the last 5 years). There were few days of my life where I didn’t hear my Mother’s voice or see her face. Those were the days I grieved loss the most. We were so close.

Mom’s perseverance, her will to push through every unbearable moment, was a true unbelievable feat that would have awarded her a medal of the highest honor.

Emotions ran high in the house. I will always recall so clearly, one of our night aides having strong words with my Mother, a truly helpless person at that point, managing only to speak from her hospital bed in our home. I could hear from my bedroom our aide was scolding my mother for aspirating her saliva, saying “Sue, I told you to do things this way”. She was probably worried her choking would alert me and I may be upset and blame the aide. I understand human beings are sensitive, and the work of an in-home aide is grueling, slightly more-so in hospital settings. I would learn to do many of their tasks in their absence during shift changes. I will never forget my Mother as I came into her room hearing the commotion, pleading for compassion from this woman, uttering the words “I am fighting for every breath! I am fighting for every minute of my life.” In an attempt to calm the aide, I told Mom to calm down, and that the aide was right, just so we could finish the night with a more positive attitude. That aide was let go the next day due to differences in personalities. Mom knew I was on her side 100% of the time, every day.

I learned in that moment, that amazing care is more than just duties and light house-work. It is the ability to make the patient forget, even just for a moment, that their life is nothing what it used to be. To make them feel like themselves again, even if just for a fleeting moment or a few hours a day. My Mother’s smile is an image burned into my memory and I believe these moments were healing

MOM AND MY PHOTOGRAPHY
I began getting serious about photography from a very young age. Dad was so into the latest gadgets and technology, that he would gift me with cameras; little ones at first, a couple were stolen and lost, but even in middle and high school I always had a camera. Finally at the age of 19, I received my first DSLR; the Nikon D80.

Mom’s idea of what was tasteful was why I always enjoyed as she critiqued my work. She would love to sit with me for hours and go through the images I took, gushing over the really good ones, and giving me tips on why other images didn’t work. “No you can’t show the bottom of a woman’s dirty shoes in photos,” and “Her pose looks very stiff and unnatural in that shot, try the other image, it’s more flattering.” While I edit my new work, these are the voices I hear loudest. I can actually hear her guiding me as I make changes to my photos. I know so well what mom would have liked and what she would have been so proud of. I get the most upset when I see an image I made and just wish I could show her so badly. I know she would have been swooning over some of the latest images I have created. I swear I hope she can see them somehow. I know how my Mother loved me so much, that if being able to see my work was an option for her now, without a doubt she would. I know they would make her happy wherever she is.

As my work improved, it became easier to please her. While I was on location, I could see the final product before I even took the photo, right before clicking the button I sometimes think, ‘Oh Mom would love this shot!’. I loved taking photographs for her, like of the dogs, holiday portraits of us, and nature images for her birthday cards I would make her.

On February 25th, 2009, Mom’s birthday, we got tickets to The Concourse de Elegance in Boca Raton. Mom was by far the most beautiful woman at the event. As I watched her get ready, I knew bringing my professional camera was imperative. She was dressed to the 9s, hair and makeup perfection, and was absolutely glowing with pride as we arrived together as a family.

When I think back to these stunning images I took of my mother (pictured above, Mom in the black outfit and bouquet of assorted flowers) I can remember looking through the lens knowing this was the ultimate night where Mom had looked better than I had ever seen her before (rivaling many other beautiful nights out!), and my skills were at a point where I was able to capture the best images of her I ever had, and ever would. I try to imagine what I would have paid someone else to take these images, and I can’t even think of a price. What these photos mean to me is the absolute legacy of who she was as a human being, as a soul, as my Mom, These images are more precious to me than things. And I took these photos! I beam with pride when I think about my work. I remember also thinking I may need to use these images some day for something important. So I kept them safe and high resolution as possible, until that day ultimately came. On March 10th, 2020 at 2:30pm as I held my mom’s hand, surrounded by my father, our favorite nurse Dawn, and another woman from hospice, I told her I would take care of everyone, including myself, and she took her last breath as I sat beside her. So many things fought to keep me from that most perfect moment, our last shared memory we had together. So elegant, as she always was, and always will be. From her favorite book “I’ll love you forever, I’ll love you for always.”

Less than two weeks after her funeral, and one week shy of 5 years at a print/design/marketing company I loved so deeply, I was shockingly and abruptly let go due to the Coronavirus pandemic. In the time following thereafter, I have focused whole-heartedly on my own photography and design company once again, and have spent tireless hours absorbing new education during isolation. I am just so grateful my mother did not also have to endure seeing this happen to me, and to the world. For she was the most self-less person I knew, seeing others suffer would have certainly weighed even more heavily on her.

“BURNT TOAST”
My Mother loved telling stories that had greater points, a bigger picture, and deep multi-faceted meanings than they first seemed. One I remember fondly is of “Burnt Toast”. Mom once said, “You know when I’m cooking for everyone and one of the pieces gets burnt? That’s the piece I take.” That’s the person she was. She wanted to give everyone the best and would sacrifice her own happiness and comfort for others. This exemplifies every act of her selflessness. She did this most of all for me and deep in my heart I knew the right thing to do was to be by her side and give back to her everything I could, I knew she deserved until her last breath.