March 25th has a very special spot on the calendar for my family because it’s my grandmother, Mary’s birthday. Mary would have been 84 years old today if ALS hadn’t taken her away from us over a decade ago. I know a lot people reading this never had the chance to meet my grandmother, so this is a little snapshot of her life.

Early Life

Mary was born in 1934 to John & Antionette Sorbello. She grew up in Syracuse, NY and had a typical teen life – went to school, had a job at the local supermarket, and fell in love at a young age. She married my grandfather, Anthony “Tony” Verone in 1955 and had their first son, John (my dad) a year later. A couple of years after that they had their second son, Anthony Jr., and became a family of four.

When I talk to my dad and my uncle about their childhood and early adult life, they have nothing but good memories to look back on. Family vacations, Sunday dinners, countless holiday traditions, and a lot of love…

My Dad’s favorite memory: “I loved our family trips whether it was going to Saratoga for the horse races, down south to Florida for Disney, to Wildwood and Atlantic City or cruises to the Caribbean. We had a lot of fun, enjoyed the moment and enjoyed each other’s company.”

My Uncle’s favorite memory: “The traditions were everything. Whether it was a simple Sunday with going to church and having a family dinner, or something a bit bigger around the holidays, my parents did everything to make it special.”

My mom, Edie joined the Verone fam in 1980 which was a pretty big deal for an Irish-German girl coming into a full-blooded Italian family! She was welcomed with open arms and became extremely close with her in-laws over the years.

My Mom’s favorite memory: “I loved how everything was meant to be memorable – cooking, family gatherings, holidays & birthdays – it was always so special.”

Our “Bema”

Although Mary was already an amazing wife, mother, and now mother-in-law, it wasn’t until 1982 that she could add “grandmother” to that list. My sister, Christina was the first-born and had the privilege of naming our grandparents for us. When she was younger, she had trouble saying “grandma” and “grandpa” so instead she spit out “Bema” and “Poppa” and the names stuck 🙂

Growing up, we lived right down the street from Bema & Poppa, literally less than 10 houses away. They were like a second set of parents to me and my siblings and we had such a close bond with them. Although I could go on and on for days with all of the stories we have to share, I think I can summarize it in four little words – they were the best.

Since Bema passed, I’ve had so many people tell me what an incredible woman she was – “simply, the best” they all say. Hardworking, dedicated, and loyal with a very strong faith, she adored her family and loved unconditionally. She was compassionate, kind and caring to every person that came into her life. Everyone says she was the glue that held everything together.

My Sister’s favorite trait: “She was so selfless. She would always want to give, give, give and make sure everyone was taken care of before herself.”

My Brother’s favorite trait: “I loved her sense of adventure and curiosity to try new things – travel, food, you name it. And her love for family; she would always want everyone to come over and be together.”

I remember her being so happy and full of joy; she always had such a gorgeous smile on her face that seemed so effortless. She had a great sense of humor, was full of little quirks, and brought the sass when she needed to 😉

The Diagnosis

It’s so crazy to me that horrible things can happen to such good people, Bema was no exception to this. This whole thing started with some weight loss. As you can see from the pictures above, Bema always had a fuller figure. She was trying to lose a few pounds and started to make some lifestyle changes. A few months later, she ended up losing so much weight that she started having issues with her teeth and had to get implants put in her mouth to hold everything in place.

After that she continued to lose even more weight and went to the doctor to get checked out. Aside from having some issues with her sugar levels, everything seemed to be normal but she just didn’t feel like her usual self. Things started to get worse with her mouth and she was having trouble chewing and swallowing. She went back in to see a speciality doctor who ordered a bunch of tests to rule out a long list of conditions. Sadly, the doctor didn’t have good news. Tests came back positive and the symptoms described were aligned with ALS. Bema was diagnosed in late 2003 and was given about 3-5 years to live.

I talked to my dad who was in the room with her when she was diagnosed and when asked how she handled the news, he said “she was devastated.” She was also shocked and confused, especially since the disease wasn’t talked about like it is today. No one really knew what it was, how it attacked the body, or how it could be treated. The doctor told her that it unfortunately was irreversible and the only “treatments” available were pain medications and muscle relaxers.

Depression set in and my grandmother completely shut down; she was in denial that something this horrible was happening to her. The doctor told her that the disease attacks everyone differently, sometimes it’s muscle weakness in the arms/legs, sometimes it’s in the mouth/throat and sometimes it focuses on a person’s breathing. If the disease progresses enough, almost all of these areas can be affected but it’s important to retain your strength.  At just under 70 years old & weighing about 100 pounds at the time, this seemed like it was going to be a difficult task.

After her diagnosis, everyone noticed a change. She did her best to stay positive and make the most of her time left, but you could see that her light for life had dimmed.

She started blending all her meals since chewing was a chore, but had trouble swallowing so she would constantly be spitting into a napkin. Soon she wasn’t getting enough nutrition so she had to have a feeding tube put in. After that, things got even worse when she started having difficulty speaking. Saying simple words turned into an aggressive workout and trying to carry on a conversation was visibly frustrating for her. She resorted to writing what she wanted to say, but even that was hard after her hands started to get weaker.

It got to a point where she didn’t want to go anywhere because she was too embarrassed to see anyone. She couldn’t talk, she couldn’t eat, she drooled constantly, and just looked very sick. She didn’t like taking pictures anymore because of her appearance and that beautiful smile of hers seemed to vanish.

Our whole family was right by her side through the entire illness, especially my Poppa. He would help her with the feeding tube, clean everything out, make sure she took her medicine, and try to keep her spirits up. But in December of 2006, Poppa had a stroke and fell at their house. He was rushed to the hospital and was kept there for awhile until his condition was more stable.

A few weeks later Bema’s condition started to get worse and we had to bring in a team of Hospice nurses to help out since my family couldn’t be there 24/7 and my grandfather was still in the hospital. They started giving her morphine to make her comfortable, but it was also making her weaker. She had a speech machine that would talk for her, but she hated the robot voice and didn’t want to use it after the first couple days.

We all had a chance to see her those last few days and say our final goodbyes. The numbers 1 and 8 have always been special to my grandparents (a story I’ll explain in a later blog) and it gives me chills to this day when I remember that Bema passed away on January 18th, 2007 at 1:18 AM. We all consider it to be her one final goodbye to all of us.

My Memories & Motivation

I hate thinking back on such a depressing time for my family so writing this post was extremely difficult. The hardest part though, is realizing that I remember Bema with her illness more than I remember her being healthy. I hate to say it, but sometimes I’m a little jealous of my siblings because they were lucky enough to have more time with her. There’s quite the age gap between me and my brother & sister so they were able to have more of “the real Bema” in their lives. I can only remember so much from when I was young, but I look at old pictures and hear everyone’s stories to fill the gaps a bit.

I do have some pretty amazing memories though —

• She used to let me try on all her jewelry and play dress up
• She would bake brownies and cut all the ends off because she knew they were my favorite part
• She would protect me from my siblings when they were picking on me 🙂
• She was the holiday QUEEN – Easter, Halloween, Thanksgiving, Christmas…
• During the summer we would go out into the backyard and pick fresh raspberries from her garden
• On vacations she would be the first one out to the pool or the beach so she could start sunbathing. She wore her yellow coverup, her cute little visor and sat there for hours. My favorite was when she would bring her lawn chair down to edge of the shore and sit there until the tide rolled in.
• And whenever we would say goodbye, we would hug and then she would say “how much does Bema love you?” and I would say “this much” as I stretched my arms as wide as they could go. She would try to stretch them even further and say “this much” and then we would hug again. ❤

These are just a few of many moments I was lucky enough to share with my grandmother. And although I may not have had as many years as I planned, I’m so thankful for the years I did. I’ve struggled with this loss for almost half of my life now and it never gets easier. Just the thought of her brings me to tears most days. I hate knowing that someone else out there is suffering just like Bema did, and their family is suffering just the same.

That’s why I became an advocate for this disease 11 years ago, because I want to be part of the movement that ends ALS once and for all. Being a part of Team Challenge ALS for the Boston Marathon has not only been a great opportunity for me to spread awareness of the disease & make a real difference in the lives of those living with ALS, it’s also been a great way to keep my grandmother’s memory alive a little bit longer.

I don’t think I could ever write anything that truly describes what a remarkable woman she was, but I hope I’m making her proud ❤

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Check out my Crowdrise page to make a contribution to the ALS Association benefitting research & patient care services: http://bit.ly/BostonBeginnings262