In the summer of 2020 my smart, creative, wonderful, loving mom was diagnosed with ALS.
Amyotrophic Lateral Sclerosis.
There is no cure.
There is no treatment where the benefits outweigh the side effects.
ALS is a terminal disease.
The prognosis is 2-5 years of life after diagnosis. Every person with ALS is different, there is no way to know exactly what the immediate future holds or how long is left.
My heart is broken.
Our family is by her side, with her every step of the way as this devastating disease progresses. My mom, Diane, is kind, loving and soft, but she is also tough. She survived lymphoma and has been in remission for over 15 years. However, there is no “fight” with ALS, nothing to “beat”, no “survivor” title to gain. There is only acceptance and peace for the present moment, grace during the tougher days, smiles during the easier ones. My mom still laughs easily, Teddy is a wonderful ray of light for all of us, and we are thankful for every day we have together. Our days since the diagnosis are spent with mom as she has always been there for us unconditionally, lovingly and completely.
Covid has allowed Teddy, my son, to school virtually, which has been such a blessing in so many ways, we spend part of each week at my parents home at Hilltop. Together we read with Teddy, have long talks, watch movies every night with my dad and brother. We look at my wedding album from last October, photos of my parents wedding albums. We talk about my mom’s parents who we all loved so much, and miss everyday. We take lots of videos. We talk about life, we talk about death, we talk about how fortunate our family is in so many ways.
My mom and I have the most amazing relationship. We always have. We never had a time when we weren’t best of friends. She is my source of confidence and strength, she is one who can always console me, she has incredible insight, compassion and empathy. For 49 years we have shared the glories of the wins and all the tears through tough decisions. Everything is better after I talk with my mom. We take a girl’s trip every year. We shop for treasures, share decadent breakfasts and drink too many lattes. We have traveled to incredible places, but it is the conversations and connection that warm my heart-it wouldn’t have mattered where we were.
We are heading on a trip to Mass Moca in MA this month. I will be silently praying it isn’t our last.
I have always been someone to take action. If there is something to be attended to or fixed, I am on it. This diagnosis has been hard to accept that there isn’t anything we can actively do to prevent the final outcome. We have been given the gift of time; during this time I wanted to do something for her. I was invited to ride in this year’s Tri-State Trek, a 100 mile bike ride dedicated to ending ALS. I am both privileged and honored to ride for Team Bannon-Crush ALS. In its eleven-year history, this team alone has raised in excess of $1 million in contributions to the Tri State Trek. I am excited to be 1 of 20 riding in this team.
My personal goal is to raise $10,000, or more. I will do it. My mom didn’t really have any options when the diagnosis was given. I am riding to raise money so someday an ALS diagnosis will not equal a death sentence.
Please donate to help me help the next daughter have a good solution to offer her mom, to give hope, to empower. As I reread this letter, I am still shocked at the words I am writing. It is surreal and so sad. Please help me raise money to fund research to prevent and treat this horrible disease.