By Amanda Cullen

Mom loved going to the Phillies Phestival to Strike Out ALS

Throughout my life, mom was always there. I don’t mean that as just a phrase. She really was always literally there for all of us, everywhere she could be, and even always there for the community. For someone who was not even five feet tall, Joyce Graffius was seen by everyone. Her size may be small, but her presence in our lives was huge.

Mom was involved in Gloucester Township Midget Football League (GTMFA) for years and was in charge of the concession stand. The local newspaper even wrote a story about mom’s home cooked meals that she would bring to the practices and games. Her concession stand was the talk of the league.

After the kids outgrew the Midget Football League and went to middle and high school, mom was still always present. She attended drama plays, softball, cheerleading, and football. Even when the kids went to college, mom and dad would travel to Florida to watch the games. Mom may not have stood taller than the other parents, but we always knew she was there for us.

That is why we knew we had to be there for her when mom learned she had ALS. She got the news in December of 2014. At the time, she was living in Chincoteague, Virginia, a beautiful beach town where she and dad had moved to in 2011 and where we had made lots of great memories in a short period of time. When we learned that mom had ALS, we knew it was bad news. This was just a few months after the Ice Bucket Challenge and we all knew way more about the disease than we had just a year earlier. Over the next couple of years, we would learn even more than we wanted to know.

We learned about mom’s symptoms, about the treatments and lack of treatments, and about the services available to us. In those first months when my parents still lived in Chicoteague, The ALS Association Chapter in Virginia assisted us by providing a shower chair and other equipment from their loaner closet.

Mom may not have physically towered over anyone, but she was always a pillar of strength for us. So when ALS started to take from her, it was like cracks in a foundation. First she had issues with her foot. She broke some toes that never healed. It went downhill from there. Mom started to slur her words. Some days were better than others, and while we were worried, nothing would stop her from living her best life possible. She continued doing everything she loved like going to the beach, enjoying country music concerts, and being involved in The American Legion, something which made her, and us, very proud.

This is how I remember mom. Standing tall and proud and full of love.

Every three months, mom would come up from Virginia to New Jersey for her ALS clinic appointment. The disease moved quickly, too quickly. She started using a cane and then switched to a light wheelchair. Within a year, she was barely able to pivot her body. Mom started to lose her ability to speak at all and she needed to use a tablet to communicate. Despite all of these changes, she was still mom. I don’t say that just to be endearing though. It’s important to realize that she was the same person and, as a result, she knew everything that was happening to her. The disease took so much from her body and she was painfully aware of it all. It was up to us to lift that pain and burden from her shoulders.

First we raised money to purchase a van with a ramp for mom’s electric wheelchair. In 2016, we convinced her to move back to New Jersey to be close to us for her care. We got involved in the Greater Philadelphia Walk to Defeat ALS to raise money for the cause and to show our support for her. Nothing boosted her more than getting to attend her grandson’s hockey games and see her younger grandchildren make their holy sacraments.

Dad supported mom through everything.

People with ALS don’t get better, the disease just gets worse. Dad continued working to pay for medical bills that insurance did not cover. We were shocked at how little insurance covered, but thankfully the Chapter was there for us and we had family and friends on hand to offer assistance. We had to hire a live in caregiver, get a bi-pap machine, and find a computer to help her communicate, which would frustrate mom because her mind was faster than the computer. The Chapter assisted in so many ways, including providing a Hoyer lift to get her out of bed and a shower chair. We knew we weren’t alone and so it was important to us to make sure that no other person with ALS would have to be alone either.

Despite all that ALS took from mom, those years gave us even more special memories. I loved seeing how mom still got her nails done and wore a full face of make-up. She joined us for a Super Bowl party, Easter Brunch, and fun on Mother’s Day. I’ll never forget how she used every bit of strength left to go to the American Legion to watch her granddaughter receive the Linda McAllister Citizenship Award. Nana’s grandchildren will grow up with precious memories of knowing how much they were loved.

Mom proud to be part of the American Legion.

On June 16, we’re going to show how much we love mom by once again taking part in the Ride to Defeat ALS. Our first ride was in 2016 when my oldest son helped us start Team Flip Flop Nana. We raised a few hundred dollars that first year and knew we would do it again.

Last year, I could not wait to ride again. I actually registered to ride 25 miles. Every week, I’d tell mom about our team’s fundraising progress. I couldn’t wait for the ride, which was on June 17. Just a few days before the ride though, on June 12, my husband insisted I go visit mom. She had not been doing well and it might be good to see her and lift her spirits.

When I saw her that day, I was so excited about our team. “Look mom, we’re at $1250 and I know we should reach $2000 by Saturday. I can’t wait to see you at the finish line.”

Except I didn’t see her at the finish line.

At 7:30 that night, just five days before the ride, I gave her a kiss and went home. When I got home, our ride packet was at the door and I went right on Facebook to encourage people to donate again. Less than two hours later I got the phone call from mom’s caregiver. She had passed away. Her pain was gone, but her love for us, and our love for her, remained.

We could have quit. We could have postponed riding until the next year. Nobody would have judged us for that. But mom never quit on us. She never quit on anything. We rode with more meaning than anybody could imagine. My dearest girlfriend made ribbons for our shirts that had flip flops on them. There were tears as we rode, and I may not have seen her at the endpoint, but Nana was there on our minds and in our hearts.

Our Ride in 2017 was tough to finish, but we did it for Nana.

We didn’t raise $2000 that year. Instead, we raised $4331, all to make life better for other ALS families and all to remember Flip Flop Nana. This year, we’re riding again. Her story will continue and we will continue her fight. More people need to know about what ALS does to a person and about what care and hope exist for families. We started riding for mom. Now we’re riding for all of the moms, the dads, the brothers and sisters, the friends and neighbors, the Nanas who are impacted by this disease. Together we ride to defeat ALS. Please join us. Sign up now at www.gpRideToDefeatALS.org

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