"It was in all those things that I learned who I was and what I wanted to do with my life. I was a nurse, teacher, mother, counselor, cheerleader, advocate and better human being for what Kevin had taught me."
At first, I had no interest in dating him. My late husband Kevin was sports and finance, handsome and strong, Irish and gregarious. I was arts and humanities, petite and diligent, Italian and profound. His mother (and my teaching colleague) Marge O’Donnell kept encouraging our romance. I knew that I would probably NOT meet my soul mate because of a matchmaker, so I politely declined. But, as fate has it, we did finally meet (along with his girlfriend) at my apartment open house on a Friday night. There was an immediate connection on my end, a physical impulse, an emotional curiosity and the urge to get to know him better. He felt the same way. When I bumped into him weeks later and asked about his girlfriend, his response was, “What girlfriend?”
Kevin proposed to me on one knee, with a painted sky as our background and several impressed passers-by, along the Delaware River. We married two years later, bought a house in Burlington, NJ and soon became the proud parents of a precious redhead, blue-eyed bundle of joy, Alina. By the time we turned 30, our lives were like many young couples.
Unfortunately, this did not last for long. In 1995, after eight months of countless doctor appointments and tests, Kevin was diagnosed with Amyotrophic Lateral Sclerosis (ALS). Until recently and the inspiration of the ALS Ice Bucket Challenge, most people only knew of ALS as Lou Gehrig’s disease. It wasn’t until that day in May, 1995, when I also learned the seriousness of an ALS diagnosis and the pain and loss to come.
Here are the basics: ALS is terminal. It’s a neuromuscular disease that robs the body of all muscle functions, eventually leaving patients (typically within 2-5 years) unable to walk, talk, eat or breathe. There is no known cause and only one available drug with little efficacy. ALS affects more men than woman, usually those between the ages of 40-70. ALS does not discriminate; there are incidences worldwide.
Kevin’s ALS journey was similar to the average progression of the disease. He relied on a wheelchair by the age of 31. He could no longer chew or swallow and needed a feeding tube by the age of 32. Not long after, he was bound to a ventilator and 24-hour care. In 2001, at the age of 35, Kevin lost his battle with ALS and I lost my life as I knew it.
I am not writing to talk about ALS, the Ice Bucket Challenge, the science of the disease, or recently published discoveries. Instead, I am writing to thank Kevin for making me the person I am today.
It was in feeding, washing and comforting Kevin throughout his nearly six-year battle with ALS that I was humbled with the gift of compassion.
It was in the endless nights of no sleep, too much worry, constant chaos and entropy that I learned to let go of the perfectionism that I craved before ALS. The vacuum sat, the laundry grew and I grew to understand its insignificance.
It was in the frequent hospital visits, when we thought that nothing else could possibly go wrong, and then it did, that I learned patience and acceptance.
It was in the quiet moments that we had as a couple, when Kevin could only communicate with his eyes, opening for yes and closing for no, that I learned how much love he felt for me even though he could no longer say, “I love you.”
It was in his final days, at his request, when writing his obituary that I understood true gratitude for marriage, in sickness and in health and for the precious time we had together.
It was in all those things that I learned who I was and what I wanted to do with my life. I was a nurse, teacher, mother, counselor, cheerleader, advocate and better human being for what Kevin had taught me. After Kevin passed, my head was full of ALS information and my heart was full of love to continue fighting in his memory. I had a beautiful daughter Alina who looked just like her daddy and who wanted to remember him too.
From the ashes of these experiences, I created Hope Loves Company®, the first nonprofit in the U.S. dedicated to providing emotional and educational support to children and young adults who had or have a loved battling ALS. Hope Loves Company® provides several free programs. We send ALS age-appropriate books to our families as resources, Hugs of Hope care packages to provide a hug from afar to a child who is a caregiver or who has lost a loved one to ALS, family fun days annually and a weekend retreat (Camp HLC®) for children and young adults to have fun, receive emotional and educational support and learn healthy coping skills.
Today, Alina is twenty-three and she volunteers at Hope Loves Company frequently. What Kevin taught me, I am passing on to her, her siblings and to the many children who walk into camp and into my life. I can’t cure ALS, I can’t bring Kevin back, but I can help to cure the loneliness that ALS brings to children through Hope Loves Company.