ONE TOUGH MOTHER

SUSAN WEIMER DESMOND

BY CHRISTINE PIACENTINO

I’ve met some “Tough Mothers” while navigating my journey with Duchenne Muscular Dystrophy. However, few have had to navigate this journey with one of their sons diagnosed with Duchenne MD and on the Autism Spectrum. Both trips have their twists and turns.

I’m excited to introduce Susan Weimer Desmond; not only is she a tough mother, but she is an accomplished figure skater with a Silver Medal from Empire State Winter Games and is continuing her family’s Webber’s Mustard Legacy.

Tell us a little bit about yourself and your background.

I Grew up in Hamburg, NY, on Lake Erie with my parents and my sister Laura.

My sister and I learned to ice skate. I loved Figure Skating. At age 17, I earned a silver medal at the the1984 Empire State Winter Games in Lake Placid. I was on a synchronized skating team at the Southtowns Skating Club, SSC, called the Southtowns Silhouettes. I skated on the Olympic rink four years after the USA Hockey Team won Gold. It was magical! Little did I know that my daughter Zoey would skate on the same rink at least six times while figure skating herself; the only difference is that she skated solo, winning several silver medals. I’m so proud of both of us!

Skating would give me the experience of volunteering with the SABAH Skating Association for the Blind and Handicapped and then Gliding Stars Adaptive Ice Skating Programs teaching ice skating to the mentally and physically challenged. I officially left the Gliding Stars in 2021. While volunteering at SABAH, I met Steven Desmond, a professional Photographer taking photos for the organization. We have been married for 24 years and have two sons and a daughter (Francis, 24; Luke, 22; Zoey, 19). We live in a

beautiful home in Orchard Park, NY.

What’s it like to have a son diagnosed with Duchenne MD and Autism Spectrum Disorder?

Our oldest child Francis was diagnosed at age eight on January 3, 2007, with Duchenne Muscular Dystrophy (DMD), an etched date in my mind forever. He has a mutation called a Splice Site. A splice site mutation is a genetic alteration in the DNA sequence at the boundary of an exon and an intron (splice and an altered protein-coding sequence). Francis was diagnosed with autism spectrum disorder (ASD) in August of 2008 at 10. Here I had not one but two significant diagnoses, one not having to do with the other one, but the two always collided with one another. To make a long story short, these were the facts of my life; raising a special needs son who had/has both physical and mental challenges for the rest of his life while raising another son and daughter who were two and five years younger. At the time, it seemed daunting! Now I’m blown away that we made it to adulthood somewhat unscathed.

When I first found out about both DMD and ASD, there were a series of many feelings that both my husband Steve & I went through at different times for both of us. The emotions were like this: Shock, you must be wrong, Denial; how did this happen to a very healthy couple, and finally, Acceptance. Then it was off to the races of ongoing research, hope, doctor appointments, etc., while all that was trying to make his life the best we could, doing the best with what we had/have. The same happened with the second diagnosis of ASD. Boys with DMD and ASD have the same dreams as regular boys, but those dreams have tremendous obstacles for Francis.

Our days are filled with Mr. & Mrs. Monster, but he always finds some reason to smile, which keeps me going.

“Not only is she a tough mother, but she is an accomplished figure skater with a Silver Medal from Empire State Winter Games and is continuing her family’s Webber’s Mustard Legacy.”

the age of 14. At the age of 9, we have the memories of going to Walt Disney World in Florida, where Francis walked all four parks himself! I cherish those moments!

As hard as life gets, I’m honored and humbled that the Lord chose me to be Francis’ Mother. I will never give up helping him even though I need help to take care of him. It’s hard as a mother to admit you need assistance, but please know it’s not a weakness but a strength to realize you need help.

Your Family created a Coffee table book entitled “A Life With A Purpose” what was the concept and the mission of creating such a book?

My husband Steve created the book. He had personally fallen into a deep hole. From the thought of Francis having DMD to his ASD diagnosis, all he did was cry and think of a life with no future for our family.

In 2011, he realized that he couldn’t live the rest of his life with these same feelings: he learned early that year the Francis had a voice and he needed to be heard. He had all the pieces... journal entries from Francis’s youth and photographs of Francis and our family... of course, the photos showed more of the happy moments than the sad ones, along with my journals entries reflecting, in words, more of the tragic and painful moments than happy ones. And Francis’ artwork somehow, as a proud Dad, held on to virtually everything Francis drew and painted because it (a) was good in Steve’s eyes as a visual artist and (b) because his art reflected what he was thinking more so than verbalizing.

The book took about a year to create, and the mission “A Life With A Purpose” rolled over to Facebook, where I made a page to help tell his story, along with keeping people updated on the dollars raised and where they were being donated. At the end of 2022, more than $22,000.00 has been submitted and presented from the “A Life With A Purpose” mission.

The book is about family. It leads in with the three Journal entries I had made at three pivotal points in our and Francis’ life. But after the first 11 pages, the book reflects “family” and the positive energy most families choose to endear.

Do you think there will be a sequel to” A Life With A Purpose”?

As for another book, Francis was initially very reluctant to even talk about his book when I was writing it. Whenever Steve spoke to him when writing it, he wanted nothing to do with it. But then, the media got involved, and Francis was autographing copies of the book (when he still could, due to the progression of DMD, he completely stopped signing his name in 2020). It was about two weeks after “A Life With A Purpose” was released. Francis called Steve to his Office. He was working on a new drawing. Steve will never forget his words, “ Dad? Can this be in my second book?” “Checks and Balances” centers around Francis’ Autism and one-line anecdotes about life. The book is half-completed as of today. At this moment, regarding Francis’ situation in his health and vitality, I’m not sure if it will ever be released as I’m not sure if I’ll ever have enough material to complete it.

What has been the hardest thing to accomplish since traveling your Journey?

Getting everyone’s needs met in the family and my own while being a caregiver to Francis.

It is making sure that Francis received all the services and equipment needed over the years and to this day. And now that he is an adult, it’s even more complex. Francis doesn’t and will not have a job or even go to college, so this makes life for him as well as us for his family challenging.

If you had to start over from scratch knowing what you know now, what would you do differently?

This is a loaded question. I wish I could go back and do a few things better than I did, like make better choices, but then again, if I didn’t make the mistakes I did and learned from them, I wouldn’t be where I am today and would not have learned anything about how strong I am. When you know better, you do better.

As far as Francis goes, I would not have gotten a standing wheelchair for him; I would have gotten a stander and a power wheelchair that did everything but stand. I would have gotten help from Nurses Aide to help me care

“The emotions were like this: Shock, you must be wrong, Denial; how did this happen to a very healthy couple, and finally, Acceptance.”

for Francis so I might have balanced things better for my younger children, my husband Steve, and myself. But I would not have changed how hard I fought for and still fought for him.

We don’t get to do things over, so let’s try to think things through before we act on items in our lives. We get one life, so try to live it to the fullest that you can see in all areas of your life. Tomorrow was never promised.

You also have a family history with the Heintz Webber Mustard Company in Buffalo, NY; tell us a little about that. for the family his wife Regina, along with my Grandfather and his siblings. He was probably no older than 6. He

The company is turning 100 years old this year! My Grandfather/my Papa would be so humbled that it made it that far. He also would have been so proud to know my husband Steve (and I) took an almost dead business out of the hole and made it the company it is today.

My Grandfather, Joseph C. Weber, was the founder of Heintz & Weber Co., Buffalo, New York. He was born on October 8, 1900, in Vienna, Austria. His Father, Adolph Weber, immigrated alone in 1905 to find work and a place to live. Two years later, in 1907 sent established the company in 1922; you do the math on his age and without a college degree. Upon the passing of my Mother, Ruth, in 1982, my Grandfather in 1984, and my Grandmother, Laura, in 1986, the company was then left to me and my sister Laura with my Father while working his job at the Ford Stamping Plant, oversaw the business and did the best he could. In 1997 Steve and I took over the business. Our children started to arrive, and a year or so after the birth of our son Luke, I decided I wanted to be at home to raise our children, but I still did some things from home or on location or worked the line when needed for the business. www.webersmustard.com

In 2022, every jar of Weber’s Brand Horseradish Mustard lists “Facebook: A Life With A Purpose” on the product label. That’s more than 350,000 views a year that Francis receives recognition for his voice.

We wanted to create a new gift pack. We decided to put Francis’ story on the side of the package in addition to my Grandfather’s story to raise awareness for DMD. with the idea to raise money for Duchenne research with every unit sold. Currently, it’s being sold at the Buffalo/Niagra International Airport. Today, the airport has sold nearly 2,000 three-packs with Francis’ story and mission on the side panel. His “life” with a “purpose” has now circulated worldwide.