My CF Mom: A Superhero Among Us

It was another crisp autumn morning in Alpharetta, Georgia as the Wish for Wendy Softball Challenge was once again raising hundreds of thousands of dollars for the Cystic Fibrosis (CF) Foundation. Suddenly out of the corner of my eye I witnessed a lovely, older woman walking slowly in my direction.

“Andy,” she said. “How much do you think we’ve raised?”

This was the question she would ask me hundreds of times during the successful twenty-year history of our event. My answer was often the same.

“A lot, Mom. A lot.”

My mother’s charitable endeavors were legendary, but it is the way she cared for others that made her an absolute legend. I am only one example of someone who benefitted from being nurtured by Eva Goldberg Lipman.

When I was born on September 4, 1973, my mother’s biggest fear was burying a second child as the life expectancy for someone with cystic fibrosis was only sixteen years. Mom and Dad lost their first child Wendy less than three years earlier to the same disease.

Mom sacrificed her teaching career when I was born due to having to take care of my medical needs. Nothing was going to stop her from making sure her son would live the life that her daughter was not afforded. Everyday Mom made sure I swallowed my enzymes so that I could absorb fats, slipped a nebulizer mask on my face to inhale my meds and administered my postural drainage by cupping her hands and hitting my sides, back and chest to loosen the mucus from my lungs. I regret that I told my teachers one day that mom hit me every morning. Perhaps I could have phrased that differently. Mom had a good laugh out of it.

Mom was always present in my life. She was the PTO president at my school, the substitute librarian, the chaperone for school trips, and the team mom for both my tennis and baseball teams. She also had the unenviable task of retrieving my pills whenever I forgot to bring them to a friend’s house.

Mom was not perfect as she was a tad overprotective. She would write notes excusing me from gym class growing up, so I did not become out of breath and feel embarrassed around my classmates. She would also carry my pills in her purse for me, so I did not have to be reminded of my disease at such a young age. She hid fliers and documentaries that mentioned the shortened life expectancy for those battling cystic fibrosis. Mom also fielded my questions about why my friends did not have to do similar treatments, why they did not have to carry pills with them and the Mount Everest of all questions: “Was I going to die?” Mom did her best to protect me but that meant not being one hundred percent honest about my prognosis. In hindsight, I am glad she did not tell me everything because it is a lot for any child to absorb.

I eventually learned of my bleak prognosis when I read an encyclopedia article in grammar school. It was then that my father helped convince my mother to channel her concern into something far different – motivation!

Mom slowly began to express more positivity rather than apprehension especially at doctor’s appointments. One day, she saw me staring at a poster of a bodybuilder on a wall in the clinic and she told me that the man with muscles had CF and I could be just like him. Sure, she fibbed but her white lies helped me maintain my sanity. She also denied my doctor’s plea to send me to CF camp to “learn what it is like to have CF.” She said she did not want me to compare myself to others with the disease just because I had it but rather to live with a “sky is the limit” mentality. Thank you, Mom.

My parents did not reveal how Wendy died until my 25th birthday when I finally demanded to know what caused my sister to lose her life. This was another way for them to protect me from knowing too much about the monster of a disease that I inherited. When I learned that CF was to blame for Wendy’s demise, I told them I wanted to start a fundraiser in my sister’s honor. I told Mom she did not have to participate in the charity softball tournament as I imagined thinking about her late daughter was not something she wanted to do.

Unbeknownst to me, Mom went to the cemetery every year on Wendy’s birthday and brought her a stuffed animal. Mom was also the same person who in the late seventies helped make the Santa Claus House, an event that raised funds for the Cystic Fibrosis Foundation, extremely successful. Mom did not take “no” for an answer and even tracked down recording artist Isaac Hayes while he was jogging on a local Atlanta street one morning and convinced him to donate signed merchandise to her charity event.

Mom was excited to get back into the fundraising game and helped us to raise $4.5 million in Wendy’s memory over our 20 years. That is when I learned how both competitive and charitable my mom was because she frequently had to know how much money was being raised to benefit those with cystic fibrosis.

“A lot, Mom. A lot.”

There were three certainties at Wish for Wendy: good weather thanks to our guardian angel Wendy, great softball games and Eva Lipman serving delicious goodies to players and volunteers like they were her own children from early in the morning until the park closed around 9:00 P.M.

Mom was my biggest fan and I was hers. Her actions and her story inspired me. She wanted me to take the role of underdog and run with it. Mom, in fact, was an underdog herself. She was born in a displaced person’s camp to two Holocaust survivors in Eshvega, Germany. She and my grandparents moved to this country when Mom was only three. None of them could speak a word of English yet the family persevered. Mom not only taught me how to become a warrior; she showed me too.

On November 18, 2020, Mom’s journey ended abruptly after a courageous battle with stage 4 hepatosplenic T-cell lymphoma, a rare but very aggressive form of cancer which she was diagnosed with just a couple of months earlier. Her doctor confided that when she saw the initial diagnosis that she did not think my mom would last a week. Mom instead lived ten weeks because my mom was a warrior and that is just what warriors do.

As I stood next to her grave just a day after she passed, tears racing down my cheeks, I felt the tight embrace of the breeze around me when her rabbi first mentioned her name. While I had not been able to hug her for months because of the concern of COVID-19, I recognized that embrace immediately. It was the person who had hugged me thousands of times in the direst of circumstances before telling me that things would be okay. That is what CF moms do.

I imagine that anyone who loses their mother would consider it a significant loss but for someone with a chronic disease like cystic fibrosis, it is simply unique. CF moms are absolute champions for their children. My mom was certainly no different.

Mom was a superstar in the CF community. So many people knew her and loved her which was only confirmed by the flooding of letters and donations from all over the country that we received when mom passed away. Knowing mom, she is probably wondering right now how much has been raised in her memory.

“A lot, Mom. A lot.”

Giving her final eulogy that Thursday afternoon was probably the most difficult speech I have ever had to give but knowing that my mother would not have to bury a second child was certainly the silver lining. I was happy that she witnessed the birth of Trikafta, the medicine that would help me and tens of thousands of others to breathe easier with cystic fibrosis. My mom played a big role in the approval of that drug. Her nearly five decades of hard work led to her receiving the 2020 Lifetime Achievement Award from the Georgia Chapter of the CF Foundation.

Eva Lipman paved the way for other CF moms to navigate through their own difficult journeys. She was a trailblazer, a hero and an advocate all in one. Most importantly to me, she was my mom. She made such an amazing difference in her family’s life. I will continue to demonstrate her courage and carry on her acts of kindness for as long as I live which thanks to my mom is a lot longer than anyone thought I would live.

Mom, we love you and will miss you so much.

How much you ask?

“A lot, Mom. A lot.”

Live your dreams and love your life.
Andy

– If you’d like make a donation in memory of my mom, please Donate Here.