Today, February 21, is Ben’s birthday. Yet another hard February day. I found myself resigned to the day rather than dreading how I would feel. I seem to find comfort in planning to spend the day immersed in the memories. I was able to spend a little time with a friend of ours, which was nice. It makes me happy when I know that Ben is remembered.
For the past few years, I have made a point of traveling on a train on what I call “Ben days.” This year the weather has been so precarious that I decided to stay home. I did miss having a little retreat. Last year, while on my little journey, I enjoyed writing, and I even wrote a poem about Ben that reflected on my train journeys. I’m reposting it here.
I began today by watching the video that I made for my Ben’s birthday post on the blog the year after he left the earth. So many happy memories, even though many photos reflect how Ben was changing as his ALS progressed. When I think back to starting this blog I remember how much time I spent creating these videos. I don’t think I realized how important the process was in coping with grief. It hurt to look through all of the photos, but the memories were what I had and they were everything. Also, Ben and I loved to master computer programs and I knew he would be very proud of my products.
Another “Ben day” tradition is to watch Ben’s favorite Disney films. I watched Monster’s Inc. Ben loved Sully so much. Sully was one of the first “people” we told about our engagement. He also made such a fuss over Ben when Ben was in the wheelchair. It was truly touching and adorable. I am always most moved by the scene in the film where Mike reconstructs Boo’s door and Sully provides that one piece he saved, which allows him to reunite with Boo. I wish I had that little piece of a door. It seems that these milestone days open the door, with the realization that my loved ones are not really there. Just the memories. They simply are not always enough. Especially in February, when that’s all I have.
I am no longer paralyzed on days like today, but February will likely always be a melancholy month filled with anniversaries of the loss of Ben, Daddy, Grandma, and my cat Disney. I have learned to coexist with grief and be intentional in dedicating the day to good memories and focused reflections. That feels right to me.
Happy Birthday, My Mickey! I hope that you are eating birthday cake, playing music, and dancing- free from the constraints of ALS. No candle on a cake, but as always, the wish for a cure for ALS. Love, Your Minnie
Walt Disney said, “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.” I agree with Walt and find this to be an optimistic way to welcome a new year. I intend to cross the threshold of 2026 with a positive outlook, accepting with grace that the negative feelings will surely infiltrate from time to time.
New Year’s Eve has never been much of a party time for me. Ben and I always had quiet celebrations. As his ALS progressed and my dad’s cancer spread, I found myself crying as we watched on television the ball drop in Times Square. The thought of a new year was daunting as thoughts of how they would fare with their illnesses loomed over all that we did. Still, as I have written (click here for that post), I am so grateful that Ben’s last new year’s eve was a fun one. Once again, Mary Poppins was right when she said, “When the world turns upside down, the best thing to do is turn right along with it.” I share this anecdote because our silly new year’s eve, which is now in my treasure trove of good yet bittersweet memories, was an important lesson in finding and acknowledging the good moments even in the most difficult times.
The start of a new year is an opportune time to reflect on the past year. I retired from teaching early in 2025, which has been a wonderful change in my life that has allowed me to explore my creativity more fully through travel and writing. One of my big goals for retirement was to submit to publishers my book, Pixie Dust for Caregivers, which is based on this blog. I am thrilled to report that it will be published at the end of the summer! I will provide more details and updates as I have them.
I am going to be a published author!
I followed through on my plan to do more writing, particularly working on picture books. In fact, it is my work with the 12 x 12 Challenge that inspired this post. Julie Hedlund, its founder, offers a 12-Days of Christmas series of videos to essentially help us jumpstart our creativity for the year. What has been particularly impactful to me is that we not only acknowledged our successes and disappointments, but we examined what we learned from the disappointments, how we can distinguish our self-judgments from the truths, and how we could take steps to learn from and act on our disappointments and truths. This resonated with me as a writer but it had me wishing that I had done more of this during my caregiving days.
While my writing experiences are hardly harrowing, perhaps my example will be helpful to you to frame your caregiving situations. For example, one of my big writing-related disappointments is that I did not submit any manuscripts to agents or editors. I often feel like I’m either not good enough or lack discipline. The truth is that while I love the freedom to write more, I have struggled to find a daily structure that works for me and I waste time binging shows and surfing the web. I spent days on end baking and decorating cookies. Also, as I look back on my various drafts and revisions, I do see improvement. Being creative in ways other than writing also lets my mind wander and tends to inspire story ideas. Instead of scolding myself, I need to harness my ability to experiment with daily structures that make me feel productive. I already started turning off the television, and I realize that I actually love being in my quiet apartment—sometimes with music and sometimes without—and settling down to write, even if it is just in my journal. Ideas keep churning and I need to get more out of my head and onto paper, though I do enjoy letting my imagination go and feeling the stories grow in my mind. My recent visit to England reminded me of how a peaceful, calming cup of tea contributes to my well-being and my imagination. To grow as a writer and a person, I need to focus on the processes and activities I enjoy, learning from instead of living in the disappointments and lamenting what I have not yet achieved. Baby steps. All good ones, even when I trip and fall.
It doesn’t get more perfect than tea at Fortnum & Mason in London.
It is easy for us to fall into the pattern of dwelling on insecurities and what we have not accomplished or what we feel is beyond our grasp. I experienced this often in my caregiving days. Caregiving can be very challenging- physically and emotionally- and the disappointments are more serious and complicated than those in my writing journey. Still, I hope that as you reflect on the past year and step into 2026, you will take moments to acknowledge the positive things you have done, and your own bravery and dedication. Look at the disappointments as opportunities to learn. Maybe you can set boundaries, explore new resources, or employ different approaches, build time to care for yourself. As caregivers, we know that much is unpredictable and/or beyond our control. My hope for you in 2026 is that you will stay curious, try new things/strategies, and allow doors to open that bring light to your life and the life of your caree.
Thanksgiving has passed and I appreciate the opportunity to contemplate the things for which I’m grateful. I believe Walt Disney was right when he said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” Conveying and feeling gratitude is important to me. Family holidays like Thanksgiving can be difficult for me because I lost the family members who were most important to me- Ben, my mom, dad, grandma, and aunt Eleanor. After their losses, there were a couple of Thanksgivings when I chose to stay home by myself because I didn’t feel like I belonged anywhere. Also, I struggled when I returned home from any kind of social activity because I felt particularly lonely and alone. I needed time to work through the grief and accept that it’s okay to enjoy my holidays and any time with my fantastic chosen family of friends.
I recently spent about two weeks in England. I have been there many times and it is the destination where I feel most at home. I love the scale of the city, the history that lives on every street, the theater, the shopping, teatime, the way the British speak— their accent and extensive and thoughtful use of vocabulary. Now, I can add magnificent Christmas lights and decorations to the list! One of the reasons I chose to visit in November was to see the holiday displays and they did not disappoint. And, I even met some very adorable squirrels who were happy to take some almonds right from my hand! Maybe my Central Park buddies alerted them to my arrival!
Selfridges had Disney-themed windows that were spectacular! My photo doesn’t do them justice. Fortnum & Mason looking festive. And a double-decker bus passing by!At the entrance to Liberty. Magical place!
Many years ago, my mom joined me in London when I studied there during the summer. My mom was most excited about finding Paddington Bear statues and visiting the store. She loved that little bear, probably as much as Mickey Mouse. At that time, it was quite a trek from Paddington Station to the store. Now, the store is right in the station, along with a statue of Paddington. When my flight arrived at Heathrow Airport, I took the express train to Paddington Station. I immediately located the Paddington statue and asked someone to take my photo. I went to the Paddington store and recalled how Mommy wanted everything she saw. I still have several, if not all, the things she chose. And, because she truly was adorable, I remember how the storekeeper saw me taking her picture and brought a Paddington bear for Mommy to hold in the photo. I liked revisiting my memories with my mom especially because London was only ours.
London 1987. My mom could not wait to visit the Paddington store! My first stop after arriving in London-GreetingPaddington at Paddington Station.
A new show just opened at the Savoy Theatre called Paddington: The Musical. I had low expectations, but I knew that it was something my mom would have wanted to do and we would have had a fun time, so I got a ticket. I even got a marmalade sandwich— the special snack at the theater— because I knew my mom would have gotten such a kick out of it. As luck would have it, the show was absolutely fantastic. Funny, sweet, touching, energetic- I wished my mom could have seen it and although I try not to get caught up in how cheated of time we were, it does sting, even after more than thirty years.
This time, I also met in person Emma and Robynn, two British women who are in my virtual picture book writing groups. How lovely that they took the time to come into London to spend time with me and what a delightful and fun time we had. We went to “The Paddington Experience,” which was an immersive experience where you join the Brown family through a series of activities. It’s cleverly designed and we jumped into the interactive fun, including a Conga line with the “train conductor.” My mom would have been completely in her element and I did shed a few tears along the way thinking of her. I’m grateful to have been able to share the experience with new friends and to give them a glimpse into my mom.
Meeting Paddington! My mom would have been ecstatic! The apple doesn’t fall far from the tree.
The most special part of being in England is visiting my longtime friends, Penny and Jeremy. I treasure the time I spend with them and appreciate that they always open their home and hearts to me. I have seen their babies grow up, now married and having babies of their own, and our relationships have blossomed. I feel fortunate and grateful to have all of them in my life.
My mom joined me on this holiday and although I missed her physical presence, I felt her nearby and was comforted by the time with her and our memories. I also liked the feeling that she was still along for my current journey.
I have had to make peace with the reality that my mom and the others have left this world, but I know that they travel everywhere with me in my heart. I am always grateful for heartwarming, if not bittersweet, memories. I like to think that being in a state of gratitude helps me to keep moving forward with an open heart, curiosity, and hope. I can revisit special places but I also create my own new memories. Maybe that’s what helped me to recognize that although at this time of year the air can feel heavy with the weight of their losses, my loved ones fill my heart and my world is rich with love, growth, and positivity. I’m grateful for all of it.
Snow White and the Seven Dwarfs Walt Disney Productions
Less than a week ago, I wrote and posted my annual letter to Ben on the anniversary of his passing. This year was a milestone year- ten years. Since then, I have been feeling quite low. Ironically, I have been thinking of the song With A Smile and a Song from Walt Disney Productions Snow White and the Seven Dwarfs (the original).
There’s no use in grumbling When the raindrops come tumbling Remember, you’re the one Who can fill the world with sunshine
In my caregiving days, I felt compelled to fill the world with sunshine for Ben and my dad. Indeed, my dark hair, extremely fair skin, love of animals, and high voice brought comparisons to Snow White, despite my lack of love for housekeeping.
For the last few days, I have not been able to find a smile and a song. I can’t seem to stop crying. It didn’t help that I was recovering from walking pneumonia, but I have found over the years that the days immediately after an anniversary date can hit me harder than the actual date. The closest to an explanation I can determine is that I focus so much on devising a way to honor these dates that I am filled with a kind of energy and satisfaction. After it passes, I flounder and am left with only the sadness and feeling of loss.
I mentioned in my last post that previously, I would travel home on the train on the date of Ben’s passing. This year, I traveled to my destination on that date and then walked around Cold Spring, NY. I realize that the time spent on the train just going home,and not figuring out how to spend the day, gave me the time I really needed to think about Ben. In fact, I often wrote my annual post on the train where all of my thoughts revolved around him. Although I wrote in my hotel room in the evening, the day was too eventful – distracting, actually- and not reflective enough. Now, the sadness has caught up with me.
I can’t seem to fill my own world with sunshine right now. And, that’s okay. The feelings are real. After all, despite bringing cheer, when there was a need for serious conversations, I did validate the fear and sorrow of Ben and my dad. It’s a tricky balance. In fact, one of the things that makes being a caregiver so challenging is countering the desire to be positive the need to be realistic and stay on your toes to solve problems without being paralyzed by emotions.
Grumpy at Walt Disney World’s Magic Kingdom, July 2014
I’m posting these feelings because I think it’s important to embrace all the ebbs and flows of emotions in caregiving and in grief. As Rafiki from The Lion King said, “The past can hurt. But the way I see it, you can either run from it or learn from it”. I have given myself permission to shed the tears and reflect on events. Unlike Snow White, I am not someone who can just turn the day around with a smile and a song. I learned that I need quiet time for reflection. Tears are okay. I know I’ll come around in my own time. Actually, taking the time to sort through my feelings and write this post has been helpful. And, knowing the ebbs and flows of grief, I know that there is truth to needing rain to get a rainbow. I guess there is a little Snow White in me, after all.
If you’re struggling, you might want to try to write your own feelings, too. Journaling can be very helpful.
We met Snow White during our last visit to Epcot, July 2014.
Today is the 70th anniversary of the release of Disney’s Lady and the Tramp. It was always a favorite of Ben’s and mine. We actually loved to sing the “Siamese Cat Song” which, I know is now understandably considered politically incorrect but which still holds fun memories because of the cats and their mischief; in fact, I used to sing it to my first cat, Tiffany (but she preferred “Born Free,” to which she actually meowed along!)
A poignant quote came from Tramp to Lady, when he told her, “Aw, come on, kid. Start building some memories.” I am always drawn to quotes about memories. Just last week I wrote about my memories about my Aunt Eleanor. Memories played such an important part of our lives when Ben was fighting his battle against ALS. They became increasingly significant to Ben, particularly as he became more homebound. He loved to look at our photos and videos from Walt Disney World and to listen to the theme park music soundtracks. We could do that for hours. It was my motivation for designing the photo calendars, throw, shower curtain and towel (click here to read more about them)– Ben was surrounded by our photos everywhere in our home. It’s nearly three years since he’s left and I remain surrounded by those things. They are a comfort for the memories the photos hold and for my memory of the happiness that I gave to Ben with those gifts.
Dessert at Tony’s Town Square Restaurant- The Lady and the Tramp-themed restaurant at Walt DisneyWorld. The Lady and the Tramp drawings were done with caramel- pretty fabulous!
We were so fortunate to be able to visit Walt Disney World four times after Ben’s ALS diagnosis. Each time, we tried to recreate our favorite memories, attending our favorite shows and visiting our favorite attractions. We did, at times, lament the attractions that Ben could no longer ride. But, we laughed that we could take the “It’s a Small World” boat repeatedly because there was never a long line and we got a boat to ourselves. Ben’s attitude was amazing. He focused on what he COULD do and, thanks to the amazing Disney cast members, we could do almost everything.
Recreating memories was, however, a tricky endeavor. Given Ben’s physical changes, it had the potential to be incredibly fun or incredibly sad. However, we were so grateful to be able to return to a place that was so important and filled with joyful memories. At Walt Disney World, we were distracted by the excitement and caught up in the fantasy. Ben loved and frequently commented about that. Once home, when Ben looked at photos, he scrutinized how he looked and how his abilities had diminished from visit to visit. For me, looking at photos is sometimes filled with splitting my world into pre-ALS and post-ALS distinctions and observations. Still, more than the physical changes, I see the joy on his face.
Our final visit to Walt Disney World in 2014 was uniquely memorable, not only because we were not sure that we would ever get there again, but also because it was filled with the creation of new memories. Frankly, I was worried that Ben would be disheartened at not being able to do a lot of the things that we used to do. Also, he could not eat many foods, so going to the restaurants that we always loved might have been an upsetting experience. So, I organized several surprises- new and different events that gave us the opportunity to create new memories. My plan was a resounding success, which makes me so proud and grateful. I wrote about our visit in a prior post, which you can see by clicking here.
Walt Disney World 2002, the pre-ALS days. We didn’t kiss over spaghetti, but we did kiss Eeyore!
Ben and I had 16 years and a dozen visits to Walt Disney World, all filled with wonderful memories. When I was the caregiver of my dad and Ben, those memories sustained me and took me from one Walt Disney World visit to the hope of another, and I lived vicariously through my friends, reading about their adventures on Facebook and occasionally, and proudly, posting photos of Ben and me at Walt Disney World or out in our neighborhood when he was still able to ride his scooter. Our friends did like to see him out in the world. I immersed myself in those memories for a long time after Ben died. I know that some people have thought that this blog is a way that I stay hidden in those memories and in the past, but the perspective I gain and thoughts shared with other caregivers in this writing process lead me forward. It is also my hope that they offer tools and perspective to other caregivers.
Coincidentally, as I reflect on the importance of my memories, I realize that today is also the 29th anniversary of the release of Disney’s The Hunchback of Notre Dame. I think about what the gargoyle, Laverne, told Quasimodo: “Life is not a spectator sport. If watching is all you’re gonna do, you’re gonna watch your life go by without ya’.” This quote holds an important message for me. I think that one of the most difficult things for me after I lost my dad and Ben was when people told me it was time for me or time to take care of myself. For one thing, I don’t really like to put the spotlight on myself. It was particularly difficult to go out and be distracted and even feel somewhat happy, just to return to an empty apartment and reminded of the loss and alone-ness, as well as guilt for even trying to enjoy myself. I preferred to put my energy into helping Ben relive and create new memories and, after he left this world, I took pride and comfort in thinking about those memories. The truth is that I will always love to visit with my memories of Ben, the good and bad times. But, I learned that my memories don’t have to end there. I now delve into new adventures that become a part of my treasure trove of beautiful memories. I do not have to live vicariously through other people.
The Hunchback of Notre Dame 1996 Walt Disney Pictures
A sadness looms over my summers because they represent the most difficult times in Ben’s battle, and ultimately when he succumbed to ALS. However, I proactively make plans to do things I love: travel to see my friends, take part in some animal adventures, do some volunteer work, and continue to work on my blog and manuscripts while formulating new ways to reach out to caregivers.
Although sometimes I do prefer to be a spectator in life and to get caught in fantasies of what I think I would like my life to look like, I don’t want my life to go by without me. It helps me to find peace in the knowledge that Ben’s spirit will always accompany me as I follow my life’s paths, make some dreams come true and make new memories.
My photo collage calendar filled with wonderful memories and new events that will bring new memories. where Ben will be present in my heart
