ANDOVER — An Andover native’s first book touches on her family’s real experiences to make the most of every day among the hardest times.
Laura Goldstein, 41, co-authored the children’s book “Today was a Good Day” with Ashley Marullo. It was inspired by the true events of both families and follows their sons’ experiences with their fathers living with amyotrophic lateral sclerosis (ALS).
The two women wrote it as a way to help children better understand the terminal disease in kid-friendly language. The mothers met through an ALS caregiver and support group on Facebook a few years ago.
Goldstein now lives in Medford, Massachusetts, with her husband Scott and their two children, Riley, 6, and Eliana, 4. Marullo lives in New York with her husband and children.
A conversation about resources for young kids related to ALS eventually turned into a book idea.
The kids and fathers in the children’s book are real people and the illustrations bring the families to life. Goldstein’s husband is the hockey-loving father in a wheelchair.
Her husband Scott, 42, was diagnosed in 2021 with ALS. She was pregnant with her second child when the couple received the news.
Scott Goldstein enjoyed playing hockey and was always active. The married couple used to hike and bike together and traveled a lot. It was something they wanted to pass along to their children, Laura Goldstein explained.
The book highlights the adventures of Scott and their son Riley, who is now 6-years-old, and who old enough to recognize the changes occurring to his dad.
The couple didn’t talk about it for a while with their son, but finally named it after Riley began asking questions. As Riley inquires, his parents give him more information. However, he doesn’t know the disease is terminal.
“We’ve used terms like there are bad guys attacking his muscles,” Laura Goldstein said. “He’s asked why we can’t get the bad guys out, which is sad, but he understands this is slowly destroying his muscles.”
Laura Goldstein is a child psychologist and she said the goal with the book was to help children process the complexity of the disease within a loved one’s body.
She had never written anything before, but said it was about getting in the mindset of how she talks to her children about ALS and how other parents might be about to talk to theirs.
Laura Goldstein and Marullo worked on the children’s book for about two years, going back and forth to fit their experiences together.
“They were similar, but different in what we were both going through,” she said. “We knew we wanted to use our own personal experience to help other people.”
Her husband gave her feedback along the way. He teared up after reading the finished product.
“It’s a nice gift for him to leave for him (their son) when he does pass away and also for our son documenting the experiences that they are still able to have despite this terrible illness,” Laura Goldstein said.
Goldstein said she hopes the book can open a conversation about terminal illnesses.
“I feel like ALS is misunderstood,” she said. “You see pictures of people in wheelchairs with vents, but it can start in any part of the body.”
Her husband’s ALS started off slow. He didn’t have true muscle weakness in the first year, she explained.
“It was just all these fasciculations, like spontaneous muscle contraction in his body, and that’s how he went to the emergency room,” Laura Goldstein said. “After searching and seeing numerous doctors, we got the final diagnosis.”
Five years later, her husband’s ALS has deteriorated his muscles at a slower pace, but he is struggling.
“Either way, you’re losing little by little,” she said.
Scott Goldstein no longer has any muscle in his legs and can’t move them at all, his wife said. He is completely wheelchair bound.
Scott is losing arm muscle and can’t lift his right arm too much. His left is getting weaker too.
ALS is affecting his breathing and his voice fatigues easily.
But the family is still living life and hoping their story will help others.
Scott Goldstein and his friend recently raised more than $27,000 this year for foundations that have helped his family along the way. Both men crossed the finish line of the Boston Marathon on April 20.
“We are continuing to do things that are meaningful even in this dark time,” Laura Goldstein said.
Part of her own coping is to find meaning and what might be useful for other families while finding joy in the moment.
“We insinuated today was a good day and insinuated that this kind of death is upon us,” she said. “But there’s always something we can make out of it.”