2024- My Year to Step Through Doors

It has taken me a while to get a grounding on my thoughts as the new year approached. I have found myself searching for the words and thoughts that best convey my feelings. I am not one for setting specific resolutions. For me, despite cautions about looking back, it is important to revisit how I feel about how the year went, and what I might like to feel like this year. It is a time to identify my growth and achievements, but also to focus on my struggles and look for inspiration and motivation. Of course, Walt Disney provides my guiding wisdom and captured my sentiments so well in this quote: We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths. I have referred to this quote a few times in this blog. It resonated when I was beginning to reshape my life as the depths of grief subsided. It continues to resonate as I choose new paths that I hope will lead me to fulfillment.

The past year had professional and personal highlights. I traveled, made strides in my writing, brought awareness of the needs of student family caregivers to my school. I made new friends and am at peace with shifts in friendships. Retirement is within reach, which makes the stress of teaching and our education system somewhat and sometimes more manageable. I have expanded my support group and workshop offerings, which is creating a whole new intriguing path. When I get nervous about the reality of my next steps, I remind myself that Walt Disney said, Fantasy and reality often overlap.”

I have been thinking about the film Up, and when Ellie wrote to Carl in her journal, Thanks for the adventure – now go have a new one!” I have opened new doors and continue to do so, I have had new adventures, and I have created a new life for myself. Lately, however, I find myself thinking that in many ways I am only standing in the doorway, not willing to fully step through into new adventures.

Although I have such a wonderful network of friends and colleagues, I still struggle with feeling very alone. Ironically, I am very independent, and grateful to be that way. If I want to go somewhere, or see a show, I am perfectly comfortable going by myself. Maybe even too comfortable. However, I am caught off-guard when doing something as simple as strolling, by a sense of aloneness. Yesterday, walking through the first snow in New York City, I immediately recalled how I would record these events for Ben when he was homebound. I even brought him snowballs. I whipped out my phone and recorded the snowfall as I always did. And I cried. I don’t know if that feeling will ever go away. At least, it doesn’t paralyze me as it once did, which is good.

My memories fill my days. They also fill my apartment. Once again, I ordered my photo calendar of Ben’s and my favorite Walt Disney World moments. I thought about creating a new 2024 calendar that featured my new memories. I thought I could even combine some of my favorites from the current calendar with photos I have taken over the past several years. Ultimately, I could not do it. It was not really that I felt disloyal to Ben either. It was that I could not stop keeping those memories alive and, basically, keeping our relationship alive. I still use our photo blanket, our photo shower curtain, and a bathroom filled with our Walt Disney World photos. Only recently did I start to really look around my home and what surrounds me. Can I really say that I want to find a new romantic relationship when my old one literally pervades so much of my current life? Would I be attracting love into my life without really being open to it? In the Pixar short, Carl’s Date, I related so strongly to Carl’s insecurity about finding love again. I felt like I was also looking for guidance, connecting to how he still acknowledged Ellie and had the support of Dug when he stepped forward. But he did step forward, and so will I. (Click here for my post about this.)

This year, I have made a great deal of progress with my writing. I have always loved to write, but it was my experiences in caregiving that led me to start this blog and stirred my passion. Ben and my dad, as well as a host of memories, were front and center of my writing endeavors. My book, which is now almost ready for submission, is based on this blog. A couple of years ago, I decided to pursue my long-held dream to write children’s books. After all, as Walt says, “All our dreams can come true if we have the courage to pursue them.” Though Christopher Robin has taught me that I am braver than I believe, I do not consider courage to be my strong suit. Still, I have taken writing courses, joined professional writing groups and learned a lot. I did find the courage to allow a small group of trusted people to read my book and children’s stories. Still, I stop short of seriously taking the next steps. I know that it is fear of success as much as fear of failure. This year, my intention is to walk through that door and see if I can at least get closer to having my fantasy of being published overlap with reality. I do know that all my loved ones believed in me- often much more than I believed in myself. Mufasa tells Simba in The Lion King, “So whenever you feel alone, just remember that those kings will always be there to guide you. And so will I.” Ben, my dad, my mom, my grandma and my aunt Eleanor are a part of so much of who I am and what I do. I will always strive to honor them in my actions. I just need to fully accept and find a way to place them in my heart while acknowledging that they are not here.

My book in progress.

So, 2024 will be the year that I apply some faith, trust and pixie dust to pursue a better balance between past and present that will let me not just open doors, but fully walk through them, knowing that I am on my own but bolstered by so much love.  

I wish everyone a peaceful, curiosity-filled 2024.

Best wishes from Abby and Tinker Bell

Thanksgiving, Gratitude, And What Does It All Mean?

Yesterday was Thanksgiving. Of course, I always take comfort in Disney, so I try to heed the advice of Walt Disney who said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.”  I have really tried to embrace that attitude and, for the most part, it helps me. I also give myself permission to acknowledge the difficult moments and not force myself to deny or spin those moments.

The truth is that Thanksgiving is a bittersweet holiday for me. Yesterday, I awoke teary, thinking about the family I have lost. These were the people to whom I was closest. While I am indeed grateful to be included in the plans of my friends, I cannot escape the feeling of aloneness. Though I have learned to coexist with grief, this is one of those days when I cannot fight the tears.

I think about my last Thanksgiving with my dad, spent in the hospital, where I schlepped a full turkey dinner that he ate, mostly, to make me feel better because I had been crying and pleading with him to eat and get stronger. My last Thanksgiving with Ben was melancholy because he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. Although it was easy to lose sight of it at the time, we did have things for which to be thankful. Being able to feel and express gratitude for each other was indeed a superpower because it gave us perspective to see the love that was there, and even to have some laughs. The love in those memories continues to warm my heart, despite the lingering sadness.

I think of my first Thanksgivings without Ben. It is my good fortune to have friends who included me in their Thanksgiving plans. I love my friends and spending time with them, and I sincerely appreciated the invitations, but the feeling of aloneness hovered. I returned to my apartment from these occasions in tears, weighed down by the unhappiness of not having any close family anymore and not knowing where I really belonged. At this time, my aunt Eleanor’s Alzheimer’s disease had also progressed to a point where I had lost the person I knew and each visit with her was yet another stinging reminder of my loss of family.

After a couple of greatly appreciated but painful Thanksgivings, one year, I decided to ignore the holiday, declining invitations and staying at home. It did not feel good either. But hey, I tried. Even when I have an epic fail as I did that holiday, I always pat myself on the back for striving to reshape my life and address the areas that are especially troubling to me.

This year, I originally planned to travel to London to completely avoid the discomfort of Thanksgiving and immerse myself in one of my favorite places, visiting people I love, too. For a couple of reasons- all positive and optimistic, by the way- I decided to postpone my trip. Still, it left me here with my discomfort. Who knows? I might have felt discomfort in London, too, knowing that I went away because I did not especially want or need to be home. I clearly miss the dependable comfort of family. Maybe, one day I will find it again. Maybe, being in a state of gratitude will help to manifest it. Too much of the touchy-feely laws of attraction stuff? Maybe. Or, maybe not!

As I said, I do have wonderful friends, and yesterday, I spent a lovely Thanksgiving evening with them. Again, I returned home feeling a mix of emotions. I let myself feel the heaviness of grief and missing my loved ones. I also let myself feel content that I did enjoy my time with dear friends. Being honest with my feelings- the positive and the negative- helps me to reflect honestly on gratitude and the spirit of Thanksgiving. I believe that it is in my acceptance of the bad moments, or days, that I began to understand what Walt meant by being in a state of gratitude. I make a practice of acknowledging gratitude, but I do not force myself to suppress my emotions.

In the 1960 Walt Disney Productions film Pollyana, Pollyanna describes the “Glad Game.” This was a game that Pollyana’s father taught her to deal with disappointment, in which you turn every tough situation around and think about something you are glad about regarding that situation. As time has passed, I have learned that being “in a state of gratitude” is not to naively play the Glad Game (click for more). It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the especially important superpower of perspective. I have a good cry when I need to, or when something triggers it, but I also acknowledge and welcome experiences or insights into those tough times that compel gratitude.

For me, I struggle with a lack of confidence, and I want to frame my gratitude list this year in the context of achievements, so I can document and hopefully clearly see growth.

  • I have said it before, but can never say enough, that I am grateful for my friends, who have shown me such kindness, generosity, compassion, and encouragement. I am grateful that I emerged from the darker days of grief to be able to enjoy creating new memories with them.
  • I am grateful for my love of animals, as they are often more intuitive and genuine than humans. And, they completely delight me! Doing animal encounters and interacting with animals gives me such a sense of fulfillment. It connects me to my dad because he also deeply loved animals. I did plan to do a penguin encounter with Ben, but a winter storm made travel in an ambulette and with his wheelchair too daunting. I did feel guilty doing my first penguin encounter without Ben. But, I have learned that I take Ben everywhere with me, and even when that is not enough, it is something. For this, too, I am grateful.
  • I am grateful to be working with Hope Loves Company, facilitating online “hangouts” for kids who have a family member with ALS, leading crafts workshops at the organization’s online camp event, and participating in the development of new endeavors. I am sorry to meet these young people at this devastating time in their lives, but grateful when I can bring them some laughs, maybe some insight, and an opportunity to socialize with other young people who share the experience of ALS in their families.
  • I originally began a club in my school intended for students who are caregivers for ill family members or even helping to raise their siblings. It has shaped up to be a club of caring, and somewhat shy, kids who want to find themselves and support others in school, in the local and global community. I am grateful that my club has worked to raise awareness in our school about student family caregivers and their struggles. We have conducted events for November’s National Caregivers Month. I have also been leading professional development sessions for teachers and staff that focus on addressing the needs of student family caregivers. I am grateful and proud to have made caregiving a part of our school’s dialogue.
  • I am grateful to find comfort in the arts and in my creative endeavors. Blogging has been tremendously helpful, and I am grateful to know that readers find comfort in my words and I am thankful to have connected with many people.
  • I am grateful to have been working diligently on my writing. I take classes and joined writing groups to help hone my skills and learn about the publishing world. I have a caregiving book and picture books in progress. I mustered the confidence to share drafts with beta readers and have gotten positive feedback and constructive criticism. I am hopeful and optimistic about being a published author.
  • I am grateful to Walt Disney and all he created for providing me with entertainment, inspiration, motivation, joy, and opportunities to reflect and sort through my feelings. I am grateful to believe that wishes can come true and that there will one day be a cure for ALS and all devastating and terminal diseases. I am grateful for my sense of whimsy and belief that if you wish and dream enough, your wish will come true. It lets me know that I will have even more to be grateful for next year!

There are and there will likely continue to be setbacks and I remain consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad, mom, and grandma proud. My memories will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. And, I keep reminding myself of what Christopher Robin said to Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know that I will be okay because I have the superpower of gratitude that allows me to embrace all my emotions and seek a balance between positive and negative moments and thoughts.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. I always welcome you to share your own in the comments.

With all good wishes,


Wishing Well at Walt Disney World July 2014

Veteran’s Day, My Dad and History Through a Disney Lens

Tomorrow is Veteran’s Day, and yesterday was the 248th birthday of the United States Marine Corps. I’ve written about how the USMC was so important to my dad (click here for more). He was a patriot through and through. My dad was not a huge Disney fan, though he had a healthy respect for Mickey Mouse (he really had no choice in our house!) Truth be told, he and Walt Disney had something important in common: patriotism.

My dad was in the USMC during the Korean War but he had a tremendous fascination with World War II, during which he was a child. He and I were so close and spent a lot of time together, but when he was ill, I cooked and ran errands for him every weekend, and Ben and I found lots of documentaries about WWII for him to watch that Daddy liked to watch with me. I still miss the days of going to bookstores and finding the new World War II titles, calling him and reading the jacket descriptions to see if they piqued his interest and buying the ones that intrigued him, despite his protests of his (not really)  impending death and that he “won’t need them where I’m going.” Daddy and Ben actually enjoyed discussing the war when Ben was well and we visited him together. Sometimes, Ben would ask me a history question and we would call Daddy and get a very detailed history lesson by phone. My dad loved that Ben knew all the important USMC and war event anniversary dates. Ben and Daddy bonded over their shared love of history, but they felt particularly close when they were both ill with terminal illnesses. The other thing they had in common was needing me as their caregiver. 

Daddy loved to visit the Cradle of Aviation museum and relive his USMC days.

In his last years, my dad was concerned about the young men serving in the military. He took such interest in the guys in our neighborhood who were returning after various deployments and were struggling to adjust to civilian life. I met some of these young men when I visited my dad and was amazed at how well my dad knew their stories. He genuinely cared about these “kids,” as he called them. He felt they were the disenfranchised, abandoned by the government and not understood or embraced by the general public. Daddy found reasons to tip these kids, give them things he knew they needed, and probably most importantly, listen to them.

Ultimately, Daddy ended up at the VA hospital out in Northport, Long Island, in the palliative care/hospice unit. We were both grateful for the amazing care he received. It certainly is not the case at all VA Hospitals around the country. I was grateful to have had the experience of meeting many veterans in that palliative care unit, hearing their stories and feeling their dedication to this country. It fueled my own pride in this country and my devotion to the men and women who have fought and continue to fight to keep us safe. I proudly display his beloved model F7- the plane he flew and one of his USMC caps, and I keep his dress blues jacket safe and sound in my closet.

My dad’s dress blues jacket. I loved to try it on when I was young. He didn’t keep his cap, but this was dear to him and it carries loving memories for me.

It pains me to think of how distraught my dad would be over what’s happening now in the country and in the world. Growing up, I dismissed his warnings that history was important because history repeats itself. I think about that so often now as I read the news. I think about what Archimedes said in The Sword and the Stone- “Man has always learned from the past. You can’t learn history in reverse.I don’t think that we are learning from the past. In fact, it seems that some leaders want to repeat some of the devastation of the past. Others want to rewrite history. In many ways, our civil rights movement has gone nowhere and this country is falling back instead of stepping forward. It scares me, and I fluctuate between wishing so much that I could talk to Daddy about it, and being relieved that he is not eating his heart out.

Not many F7 planes were made during the Korean War- he studied aviation and this was the plane he trained on- so it was hard for my dad to find a model of it and this was treasured.

Regardless of my disappointment in what I am seeing in America, today is a day to honor the veterans who have served this country. Their patriotism runs deep beyond politics that often puts their lives on the line. Daddy always wore a USMC cap and he loved when people thanked him for his service. When he saw other veterans with caps, he thanked them for their service. They would sometimes chat and reminisce. I think they liked to revisit the times when they felt strong and active. For this reason, I was so disturbed and hurt that New York City public schools were open today, when calendars note that today is the day the holiday is to be observed. Our veterans deserve better. Those who love them deserve better.

I once gave my dad a 2-disc DVD set called Walt Disney Treasures: On the Front Lines, which highlights Disney’s contribution to American military participation in World War II. My dad was amused by my ability to find this connection between my love for Disney and his love for WW2!  In 2014, shortly after my dad passed away, Disney During World War II: How the Walt Disney Studio Contributed to Victory in the War,  a fascinating coffee table book, was published. I bought the book because it reminded me of my dad and how much we embraced each other’s lives. John Baxter, the author, pointed out that during the war, Walt Disney’s studio primarily did military contract work- morale-boosting war dramas, troop entertainment and training films for the military and, unlike big companies like US Steel and the Ford Motor Company, Walt Disney insisted that the studio did not profit from this work. Walt Disney said, “Actually, if you could see close in my eyes, the American flag is waving in both of them and up my spine is growing this red, white and blue stripe.”I think my dad could relate to that comment.

Ben and I found this book at a used/rare bookstore in Nyack, NY. Without even knowing that, the rabbi at the VA hospice told me that my dad treasured and was so proud of it, which touched my heart.

Today, and always, I honor my dad and all veterans on this day, with an extra special shout out to the USMC! Semper Fi! Thank you for your service! And, because he found his way to use his unique and brilliant talents to show his patriotism, thank you, Walt Disney!

I had to have Stitch as a Marine! The USMC would never be the same!
Memorial Day, Mitchel Airfield
Daddy at Mitchel Air Field on Long Island. He took me there a few times. I can’t say I shared his enthusiasm, but I loved to see how happy it made him to bring me there.

#VeteransDay #Grief

Carl’s First Date- Adventures in Life Amidst Grief

This ornament has such meaning for me. It holds all the dreams we had for the future, that I now encapsulate in my heart

Fall was our favorite season. Not only did Ben and I love the colorful foliage, but we loved to go to Walt Disney World for Halloween, which was also around my birthday. This season remains my favorite- sweater weather, pumpkins, and beautiful colors- yet it is also bittersweet, and sometimes even melancholy. Eight years after losing Ben, I acknowledge the darkness, but I firmly put one foot in front of the other to live in the present, while carrying in my heart the love and memories of the past and envisioning and shaping my future.

It stands to reason that I was very moved by the recent Pixar episode of Dug’s Days, called Carl’s Date. Dug’s Days is a series (on Disney+) that follows the lovable dog from UP and his human, Carl, the widower who grieves his wife, Ellie. In this episode, a woman calls Carl and asks him out on a date. Carl accepts the invitation, but after he hangs up the phone, he is hit with the revelation that this is going to be a date. His reaction is, “This is very, very bad.”  He goes to Ellie’s photo and apologizes. I totally get that. I freely admit that I talk to Ben all the time. His photo is my laptop wallpaper, and I often speak to him there, and say goodnight each night.

Two years after Ben passed away, I tried my hand at online dating and had that same feeling that this was very bad. The first date I went on felt completely wrong. Truth be told, I never enjoyed or was  especially good at dating. Ben often teased me that I did not know how to flirt and did not seem to recognize when someone was flirting with me. I left online dating and have not pursued meeting anyone, despite saying that I would like to. So, here I am.

I am pleased with the interesting, loving, and exciting things I have done as I have reshaped my life. I have created many new memories. I have found a stronger voice, for myself and as an advocate for caregivers, even on behalf of my students. Lately, I am also giving a lot of thought about how and where to spend my life in retirement. I have been actively writing and studying writing, with manuscripts of a caregiving memoir and picture books that I plan to have published. I also like to envision my future being spent with someone special. However, I am reluctant to delve into that territory. I completely relate to Carl’s lack of comfort and feeling like I would have to apologize to, or reason it through, with Ben.

As Carl says, “I don’t know how to date. What do I do?” Dug, in his adorable and compassionate way, suggests things like, “Bring her a toy.” I had to laugh, because for me, this is perfect advice! To survey my home is to see a record of Ben’s and my relationship, which was punctuated with oh so many plush and other Disney toys. Bringing me a toy went very far for Ben in our courtship, as our first dates always included a visit to a Disney Store.

Along those lines, Carl tries to look younger, even dying his hair, and Dug does not recognize him. Dug asks, “Why are you not you?” It is daunting to put myself out there again, and to be judged for my age, my looks, my experiences. I suppose I must keep reminding myself that everyone has their assets, liabilities, and baggage.

When I think about bringing new romantic love into my life, I sometimes get caught up in the grief, remembering how Ben would often point out elderly couples holding hands and say that it would be us one day. We were cheated of that. Does it betray Ben to think that indeed, it would be lovely to age while holding hands with a new and lasting love? Most people would say it does not. Intellect tells me they are correct. Alas, the heart does not always agree with the mind.

Before Carl finally departs for his first date, he talks again to Ellie and says, “I guess this is a new kind of adventure for both of us. Just know you’ll always be my girl.” I think that I am ready to have that conversation with Ben. I am still unclear about how to propel that adventure. I loved that Dug joined Carl on his date. I imagine that Ben will be with me, too. He used to joke that he would haunt me if I ever met someone. In truth, I am hoping he’ll come along as a grim, grinning ghost.

We loved to stand here, on Main Street, and look at all the Halloween decorations.

Ten Things I Learned About Caregiving From Mary Poppins

Since today, October 1, marks the birthday of Julie Andrews, I will devote this post to Mary Poppins, the consummate nanny who taught me many things about caregiving. “Mary Poppins” was the first movie I saw in a theater and it remains a favorite, as does Julie Andrews.

A kind yet stern and always magical nanny, Mary Poppins added whimsy to life while addressing all of its practicalities and mishaps. She got Jane and Michael Banks to use their imaginations and see beyond the confines of their nursery.  They were safe in her care, learned the importance of rules but also how to challenge them, and, because she knew just how to step in, they built and strengthened relationship with their father. She knew how to meet the needs of the Banks family better than they did. Now that’s what I call a great caregiver!

Here are ten lessons about caregiving that I learned from Mary Poppins:

  1. “In every job that must be done there is an element of fun.”
Mary Poppins 3

There were days where there was nothing fun in the actual tasks required in Ben’s care due to ALS. But, those silly moments that made us laugh amidst the sadness are the ones that still stand out.

  1. “Worrying won’t help anyone.”
Mary Poppins 4

Even as a worrier, I know it’s true. It doesn’t help. But, if it helps you to picture worse case scenarios and create plans if necessary, go for it. Just don’t dwell! Trust Mary Poppins. It doesn’t help.

  1. “Just a spoonful of sugar helps the medicine go down, in the most delightful way!” 

Lyrics to live by! I was there for a reason, and that reason was love and compassion. There’s the sugar. It made the awful, embarrassing tasks “swallowable.”

Click to play:

  1. “Never judge things by their appearance…even carpetbags. I’m sure I never do.”
Mary Poppins 7

Because a person needs a caregiver does not mean they become irrelevant. When people would come to see Ben and talk to me as if he wasn’t there, I would redirect them to include him in the conversation, even if I had to explain what he was saying as his speech became more impaired. His brain was still very active. He mattered. I did not let anyone make assumptions about his capabilities or ideas. Always let the person know they matter. Because they do.

The same goes for people who judged our relationship. Whatever people thought of me, or of Ben, and our caregiving situation, we were the only two who were actually in our relationship for sixteen years. In any caregiving situation, particularly within a family, there are dynamics that only those involved can really understand. You can have opinions, but tread gingerly when it comes to offering advice, even if it is requested.

  1. Sometimes a little thing can be quite important.
Mary Poppins 1

A smile, a thank you, a kiss, remembering something special. I’ve written about how Ben and my relationship felt like it shifted from husband and wife to patient and caregiver. It was in little things like holding hands, sharing memories, or “inside jokes” that we were brought back to who we really were as a couple before ALS.

  1. Best foot forward. Spit spot.
Mary Poppins 6

It’s all you can do. And, when you’re dealing with a lot of crises, you can’t take a lot of time to ponder. As I’ve said in prior posts, I often had to “just keep swimming,” even though I belly-flopped, but I always put my best foot (or fin?) forward!

  1. Let’s go fly a kite

All at once you’re lighter than air
You can dance on the breeze
Over houses and trees
With your fist holding tight
To the string of your kite

Mary Poppins 5

OK, we couldn’t really do that. But, we had to maintain a sense of fantasy and whimsy that could take us outside of our reality, at least for a few moments. The trips we took to Walt Disney World were always magical, and they took on a special meaning after his diagnosis. Those trips were the kite that took us briefly away from reality. Now, I can look back on those memories with gratitude and a bittersweet delight.

  1. It’s a jolly ‘oliday with Mary

Oh, it’s a jolly ‘oliday with Mary
Mary makes your ‘eart so light!
When the day is gray and ordinary
Mary makes the sun shine bright!
Mary Poppins 2

Ben teased me that I loved to use the word “whimsical.” But, I enjoyed bringing whimsy into his homebound life. I often arrived home with shopping bags of “treats”- new tshirts for his collection, a gadget that I thought might help him, a new ingredient for our culinary adventures into pureed concoctions. It always made him smile and laugh. That made the “sun shine bright” for both of us!

  1. Supercalifragilisticexpialidocius

It’s a great word. Covers a lot of territory. It especially made me chuckle to myself when a bevy of not such nice words were going through my head!  Try it.

Click to play:

  1. “Mary Poppins. Practically perfect in every way.”
Mary Poppins 8

I tried, and often beat myself up too much for feeling that I was not a good enough caregiver. It’s a great goal, and always important to remember that we all define “perfect” differently, and that the definition may vary by circumstance. I hope that, at least at times, I was Ben’s Mary Poppins.

Happy Birthday, Julie Andrews! Thank you for all of the joy you’re brought!

All photos: Mary Poppins (1964), Walt Disney Production

#Caregivers #Caregiving #ALS #MaryPoppins #Disney