I am Abby Leonard

Abraham Lincoln once said that “In the end it’s not the years in your life that count. It’s the life in your years.” These are the words etched on my late husband’s headstone. Greg Leonard was only 33 when ALS took his life.

I’ll never forget March 1, 2021, the day Greg was officially diagnosed with ALS. When the doctors confirmed he had ALS I began sobbing and Greg began laughing. The doctor said that was known as the pseudobulbar affect (PBA)—inappropriate, exaggerated and involuntary laughter. This symptom was gut wrenching at times for us. Our sons could not comprehend why their Daddy would laugh in the worst moments. There is medication that can help with PBA, but the side effects Greg experienced were intolerable.

The days, weeks and months that passed seemed so long, at times, but in reality the 635 days that he did live after his official diagnosis was one fast blur. November 26, 2022 Greg passed peacefully at home. Even in the face of an incurable, terminal illness, Greg tried staying positive and always smiled. In his final days Greg still tried giving us his contagious smile. By that time, his facial muscles had deteriorated, when he tried to smile it was as if his eyes twinkled and smiled for him.

He was a father, a husband, a best friend and a firefighter. He had one of the funniest outgoing personalities. Although he was robbed of so many years of his life, he had a great impact on many. This was especially true for me. Being his primary caregiver, he taught me so much about life. He inspired all who loved him. He taught us to live our lives to the fullest; to always do what makes us happy even when it doesn’t make sense to others; to always lend a helping hand; to work hard; to stand up for ourselves; to find the humor in each day; to be a reason a stranger smiles; to take the trip; to make the memories; to always take the chance; and, most importantly, to love and live fearlessly without regrets.

Although it was mentally, emotionally, and physically exhausting and extremely difficult taking care of Greg, it was also fulfilling. I do not regret a single day. Our family was dealt such an unfortunate hand; however, at the same time we were very fortunate. We had the absolute very best support system. Greg was able to remain home and live his life to the fullest. In the 635 days between his diagnosis and passing, we cried together, laughed together and made countless memories with our two sons, Dash and Kip. We will never forget those moments regardless of good or bad. Those moments and days helped shape Dash, Kip and me into who we are today. This picture was our last family picture that wasn’t in a hospital bed. It was taken only 20 short days before he passed. That day will forever be one of my favorites.

Our sons were 3 and 5 when Greg was diagnosed with ALS, and only 5 and 6 when he passed. He was one month shy of seeing his oldest turn 7. Dash and Kip pulled us out of our darkest days and they were our reason to push through. Now they have lived without their Daddy for over a year. There isn’t a day that goes by that we don’t talk about him or look at pictures. The nights of me holding them on the floor as they sob for their Daddy have decreased over time. They have accepted he is not coming home from Heaven. However, the number of questions they have without answers has not changed. My biggest hope in life is that Dash, Kip and I live to see a day where their questions about ALS can be answered. My hope is that by sharing our story we can inspire another family whose world was turned upside down by ALS. To inspire them to live their lives to the fullest and make as many memories as they can even on the hard days. My hope is that we can take action and together with I AM ALS, we can rewrite the ALS story.