Eleven Years- Always With Me

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February 2020 Calendar Page

My Dear Ben,

Today marks eleven years since you left the earth. It is one of the days that remains difficult. Late last night I recalled our last night in Mount Sinai Hospital’s hospice unit. My memories remain vivid yet also surreal, as they were then. I awoke today feeling sad with the weight of the day. Dolly Parton died yesterday, and hearing talk of it as soon as I put the news on, while also summoning the energy to navigate this day, put me immediately in tears. But, I’m okay with tears.

Summer always carries the memories of your last summer. That has not changed. Having to proofread Pixie Dust For Caregivers: A Disney Fan’s Reflections on Caregiving, ALS, and Honoring Your Story brought all of the memories to the forefront. Still, I was reminded of how right Christopher Robin was when he assured Winnie the Pooh that, “If ever there’s a tomorrow when we’re not together, there’s something you must remember…You are braver than you believe and stronger than you seem and smarter than you think…. But the most important thing is, even if we’re apart, I’ll always be with you.”

I am able to immerse myself in life and the present while keeping you close in my heart. My dream of being a published author is coming true—the book will be released in about a month— and I am able to genuinely delight in that. You are the reason I will be a published author. This tangible product keeps you with me always. At the same time, reading my words about my caregiving experience and your battle with ALS conjured the sadness and frustration while highlighting that I have grown stronger and maybe a tiny bit braver. My emotions did, indeed, turn me Inside Out.

I had the wonderful opportunity to return to our treasured Vermont. This was another time that I took you with me while creating new memories with new friends who are fellow writers and my critique partners. I did talk about you and recall our adventures. It did feel bittersweet to be there without you, yet I felt comforted to be in this place that was special to us, and add a new dimension with other wonderful and supportive people. I did buy a little pirate ghosty ghost in the Weston Christmas Store because we so loved that store, we loved Halloween (I still do) and you loved pirates so much. I will never stop hurting for the time that ALS stole from you and from us. But, I know that you are with me. I am consoled by the feeling of your presence. I am also feeling a bit more confident and capable in my life.

I feel like I have reached a point where I embrace my life and accept that feelings of grief are just a part of it. You remain a huge part of who I am, as do my mom, dad, grandma and Ellie. I do like to be intentional when it comes to days like today. I already decided that next year, I will see the new Broadway show, Paddington: The Musical on my mom’s birthday to honor her love of that adorable little bear. I saw it in London last November in her honor, too. For the past few years, I have been on an Amtrak train on this day to honor your love of train rides and our many fun getaways, and I do think that suits my mood. This year, however, I spent the day here. I decided to spend time in Central Park, a place that we enjoyed and a place that has grown to be so important in my life. You were with me as I chose how to spend the day among our memories. I bought berries to bring to the turtles, and I let them know they were from you. I stopped to feed my buddy squirrels as I headed to a place we always enjoyed, the Central Park Zoo. My first stop was the Penguin House. I still have our penguin trinkets and I watched the cuties through your eyes. I also hung out watching the seals as we always did. In the Children’s Zoo, I fed the sheep and goats. You never quite understood how much I loved feeding the animals, but you always indulged me and we shared a lot of laughs. Animals make me so happy, so this visit was a way to conjure you and also give me peace of mind and joy on a difficult day.

I took myself to lunch at the diner you loved, where we had so many meals. I was keenly aware that rather than making me sad, it felt good to be there and to be able to acknowledge things that were ours, even though you’re not physically here. I guess that’s another shift in grief.

Finally, I settled in at home and watched Monsters, Inc. with your Sully plushy beside me. I wish I was as lucky as Sully and could find that little piece of the door that would bring you back to me.

Arranging these days allows me to feel close to you and to remind me of Christopher Robin’s quote. You’re always with me. I spent a lot of time feeling like I was keeping myself in a relationship that no longer existed because you’re not here anymore. I think it gave me a sense of security. I’m doing a better job of keeping you in my heart while accepting my life on my own. But, I miss you. I love you. I hope that you feel my love, not just on days like this, but every day. And I hope that wherever you are, you are eating, running, playing music, and doing everything that ALS took away from you. You are forever my loving grim grinning ghost.

All my love,

Your Minnie, Abby

This clip has the whole sweet conversation between Christopher Robin and Pooh, from Pooh’s Grand Adventure: The Search for Christopher Robin (1977), Walt Disney Television Animation

“Pooh’s Grand Adventure: The Search for Christopher Robin” (1977) Walt Disney Television Animation

Not Your Typical International Kissing Day Thoughts

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A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

The narrator (Fairy Godmother) of Disney’s 2015, live-action Cinderella said, “Time passed, and pain turned to memory.” This is one of the Disney film quotes that always gives me pause. I can look back and say that after more than a decade, I still feel the pain of losing Ben. While pain has not turned to memory, there has been a gradual shift from being immersed in deep suffering and floundering, to embracing a wide range of memories of our life together, and also to accepting and even enjoying my “present”. 

Today, July 6, marks the eleventh anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center. For me, this is the date when everything changed. The painful memories surrounding this day begin to surface with the end of June and the arrival of July.

I have learned not to have expectations about how I will feel on milestone dates, but this has remained a particularly difficult day. I woke up this morning, as I have each year, with vivid memories about how I woke up on this date eleven years ago and Ben said he could not breathe. I think of how we waited for the ambulance, not knowing what would happen. How ironic it is that today is International Kissing Day, because on that day he was connected to a ventilator and his mouth was covered with a Bipap mask. For the next few weeks, before he agreed to a tracheostomy, our way of kissing was to blink our eyes tight and then I would throw him a kiss- he couldn’t use his arms or hands to throw one back.

I remember that in the midst of the frenzy of an Emergency Room, it did not occur to me that I could lose Ben at that time. I was kept busy as the health care proxy and the only family member present. I emailed and texted his family and our friends and answered a lot of questions. I tried to stifle resentments towards his family, a few of whom had lots of questions, absurd suggestions and judgments but had never been there for him as his ALS was progressing. I was surrounded by people but felt very alone. I talked to Ben but had difficulty reading his lips through the mask. And he slept a lot, leaving me to my own thoughts about what would happen next. I shared all of this in a previous year’s post.

It’s an odd feeling that nobody else would even remember this date, and I wouldn’t expect them to. That does, however, underscore that when this crisis hit, it was just Ben and me. And, as awful as it was, I was there for Ben, he knew he could rely on me, and there was much love and trust. We may not have been a real Disney prince and princess, but the profound love and caring that we expressed throughout his experience with ALS gave special meaning to the song title So This is Love, from Disney’s original, animated Cinderella.

Today, I just want to think about Ben, and that day. I will watch Monsters Inc and think of how he loved Sully. This evening, I will host two online chat groups for Hope Loves Company, where children who are impacted by ALS because they have or lost a family member to the disease can informally hang out. It’s important to me to support caregivers, particularly young people. I might facilitate the groups, but the kids inspire me with their resilience, insight, and spirit.

Summer has never been my favorite season because I dislike warm weather, and now summer is filled with the memories of Ben’s last summer. This date may always be a difficult day. In my mind, it will always be thought of as the beginning of the end. I see all kinds of social media posts about International Kissing Day and I think that it was the first day when I couldn’t kiss Ben.

But, there is always pixie dust and Disney magic. This morning, I received an email from the Theme Park Press book designer of my soon-to-be-published book, Pixie Dust for Caregivers. I should see layouts this month. Later this month, one of my poems will be published by Little Thoughts Press, a magazine for and by children. This morning, I received a link to share where the issue can be preordered. If you would like to learn more about the issue and this wonderful magazine, click here.

Sorry Fairy Godmother, pain is not just a memory. Now, I find that the pain is in managing the memories in the context of the present conflicting emotions of joy and sadness (Inside Out is real!). Still, I like to think that Ben aligned the stars so that I would have these positive moments on what continues to be, after all these years, a rough one. Disney magic indeed. Ben, I hope that you know that I am thinking of you today and sending kisses, with love “to infinity and beyond.”

Walt Disney World, 2002
The pre-ALS days.

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Guidance From Mufasa On Father’s Day

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“Whenever you feel alone, just remember that those kings will always be there to guide you and so will I.”- Mufasa, The Lion King

I’ve written in prior posts that my dad did not like attention on holidays like his birthday or Father’s Day. He preferred to do things for other people, and not necessarily on holidays.  For this reason, other than feeling a little displaced and lonely without a plan to spend time with my dad, Father’s Day does not really bring me down. In fact, I returned on Monday from almost three weeks in Scandinavia and I did not remember the date until I listened to the news. The truth is that I don’t need a holiday to remind me that I already miss him. I do believe that he is always with me, watching over and guiding me, and that is a comfort. The cardinals in Central Park remind me of that, too, which is one of the reasons I have become so attached to being there.  Still, there are those times that I just want to pick up the phone, or feel a touch. I don’t fight the moments of sadness or loneliness, but today I want to summon the loving and good memories, because I never lose sight of how fortunate I am to have them.

My dad, in one of his favorite photos, with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker.

I have shared many memories of my dad, from his time in the Marine Corps to his love of animals to his sense of humor and wonderful laugh. More and more, I see how he has influenced who I am, in the good and not so good ways. People might think that I spoil Tinker Bell, as I did Disney and Tiffany, but I come from a family of pet spoilers! He never minded that our dogs loved to chase the squirrels, though he would shake his head as they barked at the same tree while he knew the squirrel had probably climbed to the next village! We loved animals, and I’m sure that he would have been feeding the squirrels with me, thrilled at the little relationships I have developed with my Central Park buddies.

With all of the chaos in the world, I miss getting Daddy’s perspective, particularly given his extensive knowledge of history and the military. While I generally do not address politics in this space, I know that what is happening would have devastated him- he was a proud Marine and a patriot through and through. As much as I miss his presence, I am actually grateful that he is not living through what seems to me to be the downfall of this country, but I miss the comfort of his explanations. Daddy was a yeller, and I know that he would be calling me to scream about every outrageous attempt to destroy our democracy. I did trust his judgment on world events because time and time again events did play out according to his predictions. I think back to the days of Dan Quayle, when Daddy and I would rush to the phone to call each other as soon as we heard one of his mistakes. I even got him a subscription to the “Dan Quayle Quarterly.” Now, in light of what he and I would definitely consider damage to the country, Dan Quayle’s errors would be a welcome bit of relatively harmless comic relief!

Daddy’s kind generosity certainly guided me in my approach to teaching and interactions with students.  When I saw the many students who did not have fathers to celebrate, for a variety of reasons, I knew exactly how fortunate I have been in my life. Sometimes, it was those very students who most valued hearing about my dad and hearing me say things he taught me, such as “you get more with honey than with vinegar.” When he was alive, he often contributed to supplies for the arts projects I did with the kids. While I always enjoyed bringing new experiences to the kids, an added and especially touching aspect of this involvement of my dad was that for many kids, we were providing a feeling of being cared for, a real idea of family. I know that he would be pleased that I work with Hope Loves Company to support children whose families are affected by ALS. And, I know that he would be asking how he, too, could support them. That’s just the way he was- supporting me and others.

You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!

Daddy never traveled but he encouraged me to see the world. I take him with me in my heart. In Denmark, Norway, and Sweden I visited a Jewish Museum and a Resistance Museum. I saw an actual boat that smuggled Jewish people from Denmark to Sweden. My dad would have loved the history. I was struck by the pride of the Scandinavians in their resistance efforts. It drove home for me that these are people who lived through war and occupation. They do not understand how we do not see the dangerous warning signs. I have written about times when I know my dad is with me. When we left the Resistance Museum in Oslo, I saw a man walking a Giant Schnauzer. I always seem to see a Giant Schnauzer- not a commonly spotted dog- on dates and occasions that are relevant and meaningful to my dad. I know my dad was with me at that museum.

He was the consummate pessimist, except when it came to me and my potential, and I was his consummate cheerleader. At a time when I am pursuing writing and other ideas, I must to constantly summon the confidence my dad had in me that I have never had in myself. Daddy, Ben, my mom, grandma, and aunt Ellie are all encompassed in the heart of my soon to be published book, Pixie Dust for Caregivers.

Today, I also remember that Daddy never wanted me to be sad. Believe it or not, he was not a huge fan of Disney or animation, but when I showed him videos of my Walt Disney World visits with Ben, he beamed because he said he loved to hear me laugh and happy. I cannot count the number of people who stopped me to tell me that I was my dad’s world.

Daddy would be humbled that I remember him, which is so odd to me, because he is always with me and is so much of who I am and what I aim to accomplish. Thank you, Daddy, for the lessons you taught me, the laughs and sense of humor you shared, the moral compass and patriotism you instilled in me, and the unconditional love and generosity you showed me.

Daddy, I love you and miss you, on Father’s Day and every day!

Happy Birthday, My Mickey

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ALS,Caregiving,Grief,Walt Disney World, Disney
My silly Ben with his buddy, Buzz.

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.

This image has an empty alt attribute; its file name is benabbysully-1024x683.jpg

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

Be Like Walt in 2026

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 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.

Sending wishes of peace,

Abby

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