Loss and Living Life


I have been absent from blogging for well over a year, and so after many long, contemplative hikes with my rescue dog Buddy, I decided I needed to share where I’ve been before I move to the next phase of my life as a published author.

In May 2015, my husband lost his job again. Within weeks, he had a slight foot drop, his left foot. Minor, but it gave us both pause. At times his balance seemed off. If Buddy tugged too hard on his leash, he would sometimes pull John to the ground. I took John to our PCP, who sent us to an orthopedic specialist. John’s MRI showed a ruptured disk in his spine, as well as a narrowing of his neck. We were facing extensive spinal and neck surgery, with long recoveries. We had no clue something else was at play.

I insisted on a second opinion, because the first doctor wanted to operate immediately. My gut told me to hold off, and to push for more tests, more opinions, because John presented with another troubling symptom. Fasciculations, brief, spontaneous contractions that affect a small number of muscle fibers, causing flickers of movement under his skin. It was like watching microscopic worms burrow up and down his arms.


We sought out more specialists, prepared for our youngest daughter’s upcoming wedding. But when I watched John trip on a sideway in Boston, unable to catch himself to break his fall, I knew. My family knew, too. They quietly told me they suspected a neurological disease was at play. Beyond the first specialist, no one would operate on John’s neck and/or spine. And yet, John clung to this notion that an operation would cure all, telling me how happy he was going to be once his body was repaired. He would stay up late at night, applying for jobs.

He only fell again, and again, and again.

But with the aide of a walking stick, in mid-September 2015, John managed to walk our daughter down the path to be married. I saw in the eyes of my family that day, their fears that we were dealing with something much larger than what could be fixed on an operating table. And so we all, myself included, decided to not share our concerns with John. We let John have hope, for as long as we could. We let him believe that the next specialist might approve his spine and neck surgery. We hoped that our suspicions were wrong.

On Dec. 8th, 2015, my younger sister and I took John to MGH in Boston, where within hours he was diagnosed with ALS. At the time, I thought it was the worst day of my life, but I didn’t know what lay ahead.

John deteriorated at a rate that no one could predict. Less than 3 months after his diagnosis, he lost the full use of his legs. Shortly after that, he was dependent on others for all self-care, no longer able to slowly lift a spoon to his mouth to feed himself.

Many people know our story, through what I’ve shared on Facebook, etc. The medical community all projected that John would live for 3-5 years. Very quickly, I knew this would not be the case. And so in December 2015, I started a new role as a fierce and loving advocate. It seemed like every few days I was dealing with a new crisis in terms of John’s health. My goal, my daily focus, was to keep him safe, feeling loved, and see that he had quality of life. I checked off what was doable on his wish list. I took him to San Diego to say goodbye to his mother, got him a ride in his favorite car (Austin Healey), and I organized a celebration of John’s life, just in the nick of time.

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Less than six months after his ALS diagnosis, my husband was at peace. No longer suffering from his daily muscle spasms that left him screaming in the night.

While I was strong throughout this journey of caring for and watching my husband suffer up to the end, it was the grandchildren that would break me down. Those were the moments where I had to fight to not crumble to the floor. Moments such as when 4 y.o. Landon was begging his dying PopPop to wake up so he could play trains with him.

And so, when it was my turn to speak at John’s memorial this past July, I focused on the children in his life, and on how John inspired us all.


Below is how I closed my tribute to John.

Our 4 y. o. grandson lost his best buddy and fellow train lover. After John died, Landon told everyone PopPop was happy. “He’s a zombie train engineer now, driving dead people around,” Landon insisted. A fan of zombie shows, John would have loved this image.

But then Landon asked about the box. The box with John’s ashes. Which is when Landon noticed that Buddy, our rescue dog, was sad too. In his own 4 y. o. way, Landon tried to soothe the dog’s grief. Lifting one of Buddy’s ears, he whispered, “It’s okay, Buddy. PopPop’s not coming home, Buddy. He lives in a box now.”

The box.

The box always comes up with Landon’s other questions: “Is PopPop just dust now?” “So he can never be PopPop again?”

When Landon’s mother asked him how this made him feel, he said, “I just really miss PopPop is all.”

But here’s the thing, we can all rant about how horrible ALS is or we can look to the good that grew from this experience. We had the opportunity to say goodbye. In addition, John had the opportunity to see how many people love him, how many lives he unknowingly touched. How many lives he is going to touch with his invaluable contribution to ALS research.  

John is gone. Yet we are given the chance to be thankful for what we have, that we may take for granted, day after day. We must be sure to use our voices to say what we want to before we lose the ability. And use our legs and arms and minds to accomplish good things and go places we might not otherwise go. We have the opportunity to live our lives to the fullest. What a gift that is.

Every day, I’d ask John what I could do for him. His answer was always the same. “I want to stand up and walk. I want to jump and skip and run.” In late May, he told me he was looking forward to the summer, to root beer floats, to seeing friends and family, to watching cool cars from the second floor balcony.

John wanted to live. He died six days later.

Despite his suffering, John was always grateful. It’s a lesson I don’t take lightly. He would always thank people for changing him, washing him, moving him, feeding him, even when he no longer recognized lifelong friends, his nurses and aides, and even his beloved dog, Buddy. 

Grateful. Humble. That was my husband.

So here’s to you, my Brave MacLeod, may you rest in peace.

And in the words of a four year old, I just really miss you is all.

P. S. – A heartfelt thanks to everyone who supported our family throughout this difficult journey.

P. S. S.  – I’m okay, John. I hope you are too. xo

Beverly the Moth

My day starts with the arrival of my four-year-old granddaughter. It is barely 7:00 a.m. She prances in, kicks her sandals off her feet (leaving them where they land–in front of our refrigerator), and stops cold.  

“Grandma . . . Grandma! Look at that little cute moth,” says Ava.  

Cradling a cup of coffee in my hands, I nearly trip over her shoes to get a closer look. Yes, there is a moth on my counter. An unusual pink moth. But, cute?  

“She is berry hungry, Grandma. I need to feed her.” Ava opens the refrigerator door. Out comes a bottle of apple juice, a can of tuna, a container of lettuce–   

“Where are the fruit snacks? I need some fruit snacks,” she announces. “Please!”

Back into the refrigerator goes the bottle of apple juice. The can of tuna. And the lettuce. I hand Ava a package of fruit snacks. She demolishes the serving, offering only one “yucky green” colored one to the moth. The moth shows no interest. It doesn’t move. It  may even be dead. I lean closer until I am several inches away from the insect.

“Is she eating, Grandma?”

“No, she is not eating and–” The pink moth flies toward my face, then back to the counter as if to say, “Yes, silly human, I am alive.”

 “See, Grandma, I told you she was hungry,” Ava says with a smile. “I am getting a toy for her.” A minute later, Ava plunks a pair of plastic puppies on the counter. The moth continues to pose. After five, very long minutes, we watch and wait for the moth (now dubbed Beverly) to do something. Anything.

“Maybe she wants to go outside,” I tell Ava. 


I coach Beverly onto my hand and then transfer her to Ava’s hand. Beverly escapes. I capture her. Ava tries again. Beverly escapes and I track her down one more time. The moth back in Ava’s custody, I remind her to keep her hands clasped until she is safely out the door.

“Okay, okay, Grandma.” She whispers, “Goodbye, Beverly. I will miss you, Beverly . . .”

I open the door.  Ava opens her hands . . . Ava says, “Uh-oh . . .”

Beverly had no intention of ever leaving my home. And as for what happened to the little pink moth, well . . .

Here is the newest story that Ava dictated to me while drawing her own illustrations.


Beverly was a little pink moth. All alone. Then Beverly found her family. Her family lived in a tree. It was a little tree. The color of yellow. A little like a yellow crayon. Then Beverly saw the baby moth. It was a beautiful baby moth.  And the pink moth was the mom, Beverly.  

Beverly the Moth

Beverly did not know she had a baby. The baby was orange. (“Is that a good color for a moth, Grandma?”)  

Then Beverly got lost in the land of toys.  

Beverly was scared of the little tiny toy dogs. She wanted to go home. But then, Ava picked her up and carried her outside. And when Ava opened her hands, Beverly flew back inside the house. And now, we cannot find her.  

Where is Miss Beverly Moth?  

What is she doing?  

OH NO!!!  

Beverly Moth is in Joey, the cat’s tummy!  

Joey's Full Tummy
Joey at the Tree of Moths
The Tummy Ache

Joey the cat got big tummy with big legs. He eats too much food and now he has a horse in his tummy. He wants nothing else.  

The end

Written by four-year-old Ava.

Inspire Children To Write

Yesterday, my four-year-old granddaughter asked me why I am always writing.

“Grandma, why do you always do that?”

“Because I love to write. And I am writing stories.”

“Oh,” says Ava.  She picks up my notebook and studies it. “I want to write stories too.”

I turn on my computer. “Okay, Grandma will type it out while you tell me your story.”

Ava appears to be thinking. She walks around the room. Picks up toys: her stuffed dragon, her plastic unicorn, her bear in a princess outfit.  “I need to talk the story into the microphone,” she tells me.

I hand her my compact recorder and turn it on.  Standing tall, and using hand gestures, she begins to share her story (after lining up a slew of her stuffed animals on my couch to be her audience).

And thus, Princess Freed, begins:

Keep in mind, her new word for the week is apparently.


Once upon a time there was a beautiful unicorn.  And a princess. And the princess’s  name was A Flower. She lived in a faraway castle.

It was berry, berry faraway, Grandma.

And the dragon flew, blowing fire at the princess. Then this enormous bird came and he tried to get the dragon but the dragon was berry fast. He was too fast. He went soaring through the air, flopping with enormous wings up above the body. Then a bird came with a bubble blower in his beak, holding the bubble blower, and he tried to shoot the dragon who tried to blow fire but the bird winned.

The dragon was dead and he couldn’t move anymore and the princess was freed . . .

So apparently . . .  the princess really wanted to buy a new dress. But apparently she could not drive and get to the mall. So the princess flew on a Pegasus. Then the Pegasus went to the zoo and left the princess at the mall. A Flower could not get home.

Then apparently a huge hawk came flying through the air to drive the princess back to the palace . . .

But a dragon ate them for lunch.

And the princess was dead.

But then the hawk spit her out of his tummy. She did not taste berry good.

The end.

Oh . . . and they all lived happily ever after.

By Ava.

After dictating to me, she decided to draw her own illustrations. Next, I hope to discuss story structure with her, the importance of details, consistency, and having the protagonist solve their own problem.

Look for a revised story in a future blog.