Happy Birthday, Walt Disney!

Walt Disney, Walt Disney World, ALS, Caregiver, Grief

Walt Disney was born on this day, December 5, in 1901. As anyone who knows me or reads this blog is aware, he is an idol of mine, and such a huge inspiration, for his unbridled imagination, firm belief and proof that dreams can come true, and tremendous vision. I am simply in awe of his legacy to this world.

In my blog I shine the light on wonderful memories of Walt Disney World and how it makes me feel so connected to my mom and to Ben, and for that I will always be grateful.

When I first began this blog, in celebration of Walt’s birthday, I put together just a few of his quotes that are special to me. I turn to them when I need some inspiration, and I’d like to present them as an annual tribute to his brilliance on his birthday!

“That’s the real trouble with the world. Too many people grow up.”

My mom loved Disney and was also a child at heart. I got that spirit from her. I think it’s always important to retain our sense of whimsy and wonder. It helps to stay optimistic and to be creative in problem solving.

Mickey Mouse, Walt Disney World, Disney

My parents with Mickey in 1987

“People who have worked with me say I am ‘innocence in action.’ They say I have the innocence and unself-consciousness of a child.”

People might say that I am sometimes a bit of a Pollyanna in my innocence, but it’s who I am. Yes, I do get disappointed sometimes, and I have learned to balance innocence with a need to protect myself, but I believe that this quality enables me to see possibilities and to fantasize in a healthy way.

waltandmary

“Laughter is timeless, imagination has no age, dreams are forever.”

Agreed. The perfect quote. It was a mindset Ben and I needed as he dealt with ALS. It’s a favorite quote that continues to lead me forward and allows me to stay a child at heart no matter the grown-up challenges I face.

Walt Disney, Walt Disney World

“The greatest moments in life are not concerned with selfish achievements but rather with the things we do for the people we love and esteem.” 

I think that every caregiver would wholeheartedly agree with that.

Walt Disney, Walt Disney World, ALS, Caregiver, Grief

“I hope we never lose sight of one thing-that it was all started by a mouse.”

Walt Disney, Walt Disney World

“Why be a governor or a senator when you can be king of Disneyland?”

Given the current state of the country, I’d opt for a position at Disneyland!

October 2019 next to Walt and Mickey. My first time back at WDW without Ben. I still found the magic and the laughter.

Happy Birthday, Walt, the consummate child at heart!  Thank you for all you’ve given to me and the legacy you’ve left to the world.

This was my beloved cat, Disney, celebrating Mr. Walt's birthday, along with Duffy (X 2) and Eeyore!

My cat, Disney, celebrating Mr. Walt’s birthday, along with Duffy (X 2) and Eeyore!

 

Difficult Days of Fall and Helpful Grim, Grinning Ghosts

October 2020 Calendar Page. Our favorite time to be at Walt Disney World- Halloween!

My Dear Ben,

I’m writing you this letter because Fall is a time when I especially wish I could talk to you, walk with you, cuddle up in the eagerly anticipated cooler weather and just enjoy this favorite season as we always did. Now, another birthday has passed for me and yesterday was Halloween. These remain hard days without you. I’ve never been someone who likes to celebrate myself, but it always touched my heart that you celebrated me on my birthday (and other times, of course), often surprising me with romantic gestures. You always laughed at my proudly wearing my birthday badge at Walt Disney World, but everything is whimsical and magical at Walt Disney World. Halloween is a different story because although I loved it since childhood, it really became our holiday. It’s that simple. It’s even the day we got engaged. Yes, these remain a rollercoaster of a few days, magnified by this rollercoaster of a 2020 and the upcoming election for what I truly believe is the soul of our country.

This was the birthday I’ve dreaded- 59- the year my mom died suddenly and the year she also seemed to dread, though now it seems it was almost her cosmic understanding of what was to happen. I can’t help but be affected by it. I’m already older than you were when you left this earth. It’s hard to reconcile. Part of me is scared, and part of me wonders if it would really matter if I wasn’t here, except to Tinker Bell. Maybe being alone so much during the quarantining has added to those feelings of isolation and irrelevance. On the other hand, if I wasn’t here, would I be with you, my parents, my grandma and everyone I’ve loved and lost, including my beloved pets? No one knows, but it’s nice and comforting to believe.

ALS, Walt Disney World, Pooh, Rabbit,Caregiving

Halloween 2012 at Walt Disney World. We never met Rabbit (there was probably too much frolicking), but had fun with his 100 Acre Woods buddies.

In Ratatouille Gusteau tells Remy, “If you focus on what you left behind you will never see what lies ahead!  It’s a tricky balancing act to hold dear so many wonderful memories that are my comfort zone and security, but also remind myself that I am still here. I find myself confused. I drift between past and present and I don’t know where I fit. I embrace the present and weave in the past, while I tentatively try to shape, or look to, a future. When I think about my mom at age 59, I don’t know what to think about a future. I take more delight in life, and I’ve gotten to a point where I can be more festive again on Halloween but the pandemic has led to a quieter and less colorful holiday. I decorated the apartment with some of our things and some new things. I still can’t enjoy some of our decorations from Walt Disney World. It always surprises me that some things are a comfort while other things unnerve and sadden me. I don’t dwell on it or fight the emotions. My favorite tradition now is to change the number on the Mickey Mouse Halloween countdown figurine every day, smiling at the memory of how happy it made you and how you texted me at work to jokingly reprimand me if I had forgotten to change the number before I left home. This week, I entertained my students with your Haunted Mansion playlist and my many Mickey’s Not So Scary Halloween Party t-shirts that we waited and waited for at the shops in the moments before the parade- what craziness ensued as the cast members revealed the shirts and we all grabbed at them! I love that many of the t-shirts are now a part of the t-shirt quilt that surrounds me with memories every night. I’ve looked at our pictures, vividly remembering the details. I keep the funny light up “engagement ring” that you gave me one Halloween at Walt Disney World next to my bed. It almost seems surreal now.

It’s here- Happy Halloween!

I’ve come to accept that Halloween is something that I now have to experience for myself, though I do feel like I experience it through your eyes and with you in every step I take, smiling as I think about how you would react to the decorations and costumes. I am so grateful that last year I got to see Walt Disney World in its Halloween splendor. It was something I was not sure I could or would ever do without you, and I was nervous about it, but it was a new and different experience because it was with Monica, Abby and Andi. I was relieved and grateful to discover that it was a way to look back but also be present. It even gave me a glimpse at how I looked towards and positioned myself in the future. That’s not always easy for me, but now I know that I can do it and that good things lie ahead.

Abby x 2 to the left, and Andi and Monica to the right of Buzz.

Never losing sight of that I’m really not alone (and I don’t just mean those ghosty ghost buddies).

Yesterday, for the first time since you left, I decided to walk on our favorite block. Because of the pandemic, there was no block party. Some of the buildings did a bit of decorating but there was a banner saying that they will be back next year. I hope so. In a way, I was grateful that it was very different. I didn’t have to feel the pain of missing you while seeing all of the adorable costumed kids and fabulous decorations. They weren’t there, just like you. Still, I ventured forth and despite the trepidation, I am learning that I can take those steps- literally.

In Disney’s The Hunchback of Notre Dame, 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’.”  Until the pandemic and quarantines began, for the past couple of years I did take the leap from relying on memories and being a spectator of life to traveling, enjoying theater, exploring new parts of the city, making new friends, and even investigating online dating- you did always say you’d haunt me if I met someone new, so maybe you’re responsible for my lack of success in that venture! Still, the joy is sometimes undercut by sadness, guilt or even the dread of unexpected triggers of grief and tears. I saw friends yesterday and I do get together with people whenever social distancing protocols allow, so I’m trying my best to live my life with zest. However, I can’t deny that I ended up once again alone on my sofa reminded that Halloween will never really be the same. At least on Halloween, even though we are apart, I smile as I think of you as a grim grinning ghost and know that you are residing at the Haunted Mansion. And, in my effort to honor you and continue to find delight and whimsy, this year I made new grim grinning ghost cookies!

I found Grim, Grinning Ghost cookie cutters!

Maybe the truth is to be found in wisdom from Mary Poppins, who in Mary Poppins Returns said, “When you change the view from where you stood the things you view will change for good.” I have been able to look back on my memories, shifting from the challenging times of caregiving and the depths of grief to see that I learned so much and had a unique and treasured opportunity to give and receive love. I was not being naïve or denying the physical and emotional challenges and scars, but broadening my way of looking at them. I think about how Ellie left the final message for Carl that said, “Thanks for the adventure. Now go and have a new one.”  I can’t flip a switch and change my frame of mind, I think that I can begin to shift my view. Instead of focusing on how events like Halloween will never be the same and that your absence is my strongest feeling, I want to work on shifting to the view that our life together and the beautiful – and even not so beautiful- times we shared have paved the way for me to know that life is filled with adventures and that I can seek and find a comfort zone with new people and experiences and maybe, if I’m really lucky again, romance and love. Thank YOU for the adventure. Please stay the grim grinning ghost who forever watches over me!

Happy, Not-So-Scary Halloween, my Ben! Boo To You!

Love,

Abby

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Mickey’s Not So Scary Halloween Party 2012

 

 

On the Anniversary of The Jungle Book- A look at Caregiving, ALS and Fighting Shere Khan

Disney’s Animal Kingdom- 2001, pre-ALS. Ben was psyched to meet Baloo!

Today marks the 53rd anniversary of Disney’s The Jungle Book. I love this classic tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by Shere Khan, the tiger who hates man and is determined to kill Mowgli. I even enjoyed the live action remake. I am moved by the sweet tale of Mowgli’s relationship with Bagheera, the wise panther who teaches and watches over him, and Baloo, the big goofy bear who is a great and caring friend. I always smile when I watch this film, because Ben loved Baloo and fancied himself a big,cuddly bear- a description with which I must agree! There is much discussion about racism in what we consider our treasure trove of classics, including many Disney films. I do believe that it is important to acknowledge and address these issues. Caregiving knows no boundaries. When I watch the film, I cannot help but reflect upon how much The Jungle Book has to say about a caregiving relationship and how Ben and I confronted ALS.

Bagheera has all the qualities of a good caregiver: patience, the ability to listen and reason, understanding of Mowgli as a man-cub within the jungle environment, willingness to let Mowgli test himself, reliability, intelligence, common sense and loyalty. Who could ask for more in a caregiver? Baloo is a great buddy, and he and Mowgli have a deep friendship and love, but Baloo also needs the guidance of Bagheera. When Baloo resists the reality that Mowgli needs to return to the “man village” and be around people like himself, Bagheera needs to remind Baloo that although he loves his little buddy and thinks of him as a son, he has to see the big picture in caring for Mowgli and that he has to think about what was best for Mowgli and not just for himself. Those are tough choices and I remember them well. Caring for Ben meant never losing sight of what our priorities were. Like Baloo, there were many times when I felt Ben deserved to indulge in any of his whims because I did not know how long he would have that luxury. And, we knew that time was not on his side. Taking him to Walt Disney World for one last visit was a very joyful indulgence. There were also the gut wrenching realities. I remember that after Ben repeatedly said that he wanted to go home from the hospital, I just wanted to honor his wishes and I asked his doctor if it would be possible to bring him home. His doctor, who proved to be my Bagheera, provided the wisdom and the reasoning, and then I had to have those heartbreaking conversations with Ben. There were stressful times when, just like Baloo and Mowgli, we argued and sulked. But, the caring in caregiving never went away and neither did the love.

I suppose that ALS was our Shere Khan. The wolves who raised Mowgli from the time Bagheera found him knew that they could not stand up to Shere Khan. They did not stop loving Mowgli, but they knew that he could not continue to live with them or Shere Khan likely would have killed all of them. Caregiving also comes with these difficult decisions. Sometimes it’s a matter of caregiving becoming so difficult that it poses physical and emotional risks to a caregiver. In Ben’s case, had he not chosen to go to the hospital’s hospice unit and separate from the vent, he would have had to go to a facility because he could not have lived in our apartment with a tracheostomy and needing 24/7 nursing care. This was not an option we liked but it was one we had to accept.

I could also relate to the battle in which Shere Khan seriously wounds Baloo- the fight to protect and care for Ben did take a toll on me in many ways that have still left scars, but love and devotion kept me at his side and I have no regrets about that. Just like Shere Khan, ALS was a deadly force, but, unfortunately, in our true story, it was one that we could not outwit or defeat.

I don’t know that I would run to Baloo for help in a crisis, though he might be great comic relief! Still, Baloo was protective of Mowgli and he has a good message. As caregivers, we don’t often get to “forget about your worries and your strife” and life seems much more complicated than “the bare necessities.” However, it is so important to take the time to cherish and remember the simple and wonderful aspects of our relationships and life prior to caregiving. These are the things that let you remember who you were before you were in a caregiving relationship.

As for me, I think I was a combination of Bagheera and Baloo- a dedicated, thoughtful caregiver, acquiring skills and perspective during on the job training, with a sense of humor and incredible klutziness. Importantly, Ben always felt safe and secure with me. Some caregivers choose the role and others are thrust into it. In any situation, it’s important to know ourselves and to honestly assess the dynamics of our relationships and the shifts over time. Are you more Bagheera or Baloo? How do you define a good caregiver? Are there other characters in your story in supporting roles? These are all part of “the bare necessities of life” in caregiving.

 

An “Oh, Bother” Kind of Day

Grief,Disney,Winnie the Pooh

The Many Adventures of Winnie The Pooh
Walt Disney Productions

“Oh, Bother!”

No matter how well I think I’m doing and how much of a new normal I feel I’ve come to know, I cannot avoid those Winnie the Pooh “Oh, bother!” moments or days.  I read so many comments from people expressing anxiety and/or confusion about how they are handling grief or the many conflicting emotions involved in caregiving. I relate to that self-judgment but I have also come to realize that it is just a part of the grief with which I have come to co-exist.

August 26 was five years since Ben left this world. Five years seemed a milestone period of time to me and the date weighed on me. As always, days come and go, sadness ebbs and flows. The fact that the anniversary also is so close to the beginning of the school year adds anxiety to this time. I know and understand all those emotions, so I just accept the imbalance in my feelings and moods. As I’ve written, the pandemic and quarantine have also brought memories and thoughts of how worried I would be if Ben were here and I had to worry about bringing COVID19 to him, or what we would do if I became ill. Caregiving may no longer be my responsibility, but those thoughts never seem to go away. On the plus side, I think it’s a good thing that I am very sensitive to the concerns of others.

I have received many signs and messages from Ben over the years and I know that he is with me. Although I often feel his presence, lately, I have been more aware of his absence, and it bothers me. I’ve looked for signs that are not there. I am terrified of birds, but have had cardinals show up literally in my path staring at me. I’ve read that they carry spiritual messages, so although Ben knew how terrified I am of birds, I can’t help but believe that they were messages from me.

Fall was always Ben’s and my favorite time of year. We loved Halloween. For a while, it was too difficult to face Halloween without Ben, but I’ve slowly embraced it. In fact, last year at this time I was in Walt Disney World enjoying Mickey’s Not So Scary Halloween Party with my friend and her daughters and although it was bittersweet and there were tears, I enjoyed it and also enjoyed watching it through Ben’s eyes. At home, we always decorated, but for a while the decorations were too hard to have around. I would go to storage, look in the box, see if anything felt okay and take those things. I was surprised that the Disney Halloween countdown calendar actually proved a comfort to me but most things still remain in storage. Last year, I bought a few new things that remind me of Ben but also allow Halloween to look a little different. Yesterday, I went to storage and again looked at our Halloween collection. Again, I left most things except for those that I know that I have enjoyed displaying. At the last minute, I decided to take the banner that hung in our Walt Disney World hotel room during our last visit in 2014, when I had the room decorated for Halloween as a surprise for Ben- a very big surprise, particularly since it was July! I had tried to display the banner once before and found it upsetting, but something told me to try again. I do push myself, but also don’t judge myself about these kinds of things. As it turned out, I put up the banner and it bothered me. Over the course of the evening it really started to unnerve and upset me. I took it down, apologized aloud to Ben, and put it away. I will never know why things affect me so differently. They just do. I felt better without the banner, so I know it was right to put it away. Maybe I’ll try again next year. Maybe not. Although it’s emotional, I still feel compelled to decorate and it still gives me a feeling of connection to Ben. The good memories still make me smile despite the sadness.

This banner greeted us when we arrived at our room at Walt Disney World’s Boardwalk Inn. I just can’t enjoy it now.

It’s here- Happy Halloween! This is a Halloween countdown figurine I surprised Ben with that he loved. I thought it would make me sad but it gives me tremendous joy and comfort.

This morning, I took a long walk through Central Park. I have been able to take more walks through Central Park now that the weather has cooled a bit. With my Halloween sadness looming, I found myself tearing up as I walked around, missing being with Ben and together enjoying the arrival of fall. I know he would have enjoyed feeding the squirrels with me. I tossed money into each musician’s case or bucket because Ben always did- he loved music and had much respect for musicians. I stopped at the Hans Christian Andersen statue and thought about how we originally developed a connection because we loved the film Hans Christian Andersen as kids and he surprised me with the DVD when we had just begun dating. I started today’s walk feeling glad to be getting back in shape on walks that I enjoy so much and returned home in a mood of melancholy.

Hans Christian Andersen statue in Central Park

The squirrels love peanuts!

A lovely view of Central Park

I understand it. I can reason it. Still, as I walked home, I couldn’t help but feel exhausted at not being able to prepare for these unexpected triggers. I have learned to expect the unexpected, but it does not mean it doesn’t upset me. In a way, I think that these moments cause me to be aware of how I balance my emotions. Since I do think a lot about honoring Ben in all that I do, these setbacks during which I acknowledge how much I miss him and give me a time to spiritually and quietly send that message to him. I wanted to write down these thoughts for those readers who feel the frustration of how and if one really emerges from grief. I know that I have steadily gotten better. I believe that it’s normal and actually, okay, that I have those kinds of Eeyore-ish days, since I know that indeed, I have carved out a life for myself, even though I am sure of exactly where I want to be. As much as I remind myself of this new normal status, still, the bottom line on days like yesterday and today is “Oh, bother!”

The last time that Ben and I were around Central Park in the fall of 2013.

Merida’s Lessons About Being Brave Enough To Emerge From Grief And Explore My Destiny

Brave, Walt Disney Pictures, Pixar Animation Studios 2012

This is always a strange time of year. I feel like I spend the summer with the anniversary of Ben’s passing looming over me, wondering how it will affect me, what I should do and where I should be in grief and in life. Once August 26 passes, in a way, I breathe a sigh of relief. On the other hand, it leaves me feeling in limbo. Now what?  There is more anxious anticipation as I await the start of a new school year. This year, the entire summer was off kilter due to the pandemic. I often had to check my phone to see the date. Time flew at the same time that it stood still. But, summer has come to an end. The school year will begin but in many ways it remains undetermined. I feel very disrespected as a teacher. It’s a lousy way to feel. I know it well, from the caregiving days of showing up and doing my best despite a lack of appreciation.

Maybe because it’s been five years and that feels like a big chunk of time, I’ve been feeling that it’s time to move forward on the ideas and dreams that have been percolating in my mind. It took a year from the time Ben left this world, but despite a lack of confidence, I started my blog, Pixie Dust For Caregivers, which has been a wonderful, rewarding experience. I earned my certification as a Caregiving Consultant, which bolsters my ability to support other caregivers, as does my volunteer work. I have wanted to do more, particularly with young people. Walt Disney says, “Think. Believe. Dream. Dare.” Believing in myself and daring are not things that come easy to me. Last week, I started to make strides that make me feel that I am finally becoming brave enough to realize my goals, dreams, and destiny.

Last fall, I talked to my wonderful principal about the possibility of reaching out to students who are caregivers- either for a parent/relative or even for siblings. I noticed that there were many amongst my classes- they could be frazzled, distracted, exhausted or emotional. Knowing how hard it was for me, an adult, to juggle caregiving with a full-time job, my heart went out to teenagers trying to process and carry out all of those responsibilities. My principal was very supportive of the idea and he suggested starting a club and talking to guidance counselors who could let students know about it, leaving it to the students to reach out to me rather than compromising their privacy. I positioned the club for the school as a club for caregivers but also for students who felt that they wanted and/or needed to take some time to care for themselves and others. As a group, we talked about volunteer activities.  Shortly after the club got underway, the wildfires in Australia began and many students talked to me about the animals because they knew how much I love animals. The club’s first activity was a fundraiser for the animals in Australia, and they were very proud of their success. The kids are remarkably talented and had so much energy, creating social media posts, baking, and generating enthusiasm.

Once the pandemic hit, the idea of volunteer activities was more challenging, but we continued weekly remote meetings. The students wanted to create school-wide remote workshops and they had great concepts. I helped them with their ideas and their pacing, had them handle our club’s Instagram account, and provided any oversight necessary. It was fun and inspiring just to listen to them chat during our meetings- cheering, supporting and advising each other. Their friends and even some teachers joined us for our workshops, which was a great sense of community at a time when we felt isolated. For a while, I focused on my frustration that the club was not accomplishing my original goal of reaching caregivers. However, as I thought more about it, I realized that I was nurturing a caring community. I was working with a group of young people to explore the idea of showing compassion, even remotely. These were students who, like me, are care givers. This is another path of my journey. I just had to step back, reflect and see it.

I pursued potential volunteer activities and at a virtual meeting met a woman who coordinates volunteer activities for a local organization that provides services to youth removed from their homes and facing some very tough life circumstances. I reached out to her about the possibility of having my students volunteer as a group, explaining that we had done a student-led journaling workshop that I felt could work well with her population. Although the organization had not worked with teen volunteers before, after a Zoom meeting with the program managers, there was a feeling that their population might actually really appreciate interacting with kids around their age. They put a lot of trust in me to carry this out, and I have a lot of faith in my students, so I knew that with support, they would do an outstanding job.

It took a few months of coordination among four centers where the youth are living, but we did our workshop last week. I was so nervous, doubting myself and just hoping that it would go smoothly and be well received. In fact, it was an extraordinary experience. The youth were all engaged, spirited and eager to participate. My student leader was sensitive, articulate and thoughtful, and the club members who participated were animated and happy to interact and support the effort. It was truly heartwarming. My students said they felt very special that the teens were so open and honest. They loved that the youth were holding up their work to the camera so we could see what they created in response to the prompts, which included what is your favorite word, what makes you happy, what is a source of stress. The feedback I received from the organization was overwhelmingly positive. They saw in the reactions and responses of their young people that this was a much needed and valuable endeavor. The teens completely embraced the opportunity to express themselves and share their feelings with my students. Journaling could prove to be a tremendous inspiration and pathway for self-expression that will help all of these young people in life. The organization’s staff was very impressed with my students, which makes me very proud of and happy for them. The teens can’t wait for us to return! I was so pleased to share all of the positive feedback with “my kids” as I call them. A remote session and working with teen volunteers were completely unchartered territory for the organization, and the activity as a volunteer effort was new for all of us, but we achieved something quite wonderful! I can honestly say I followed Walt’s formula: Thought. Believed. Dreamed. Dared. And it went well beyond expectations.

No one knows how this school year will work, but I’m hopeful that the club will continue our partnership with this local community organization and, perhaps, even create new partnerships and expand our club. More important, we are expanding our group of giving, compassionate, givers of care and support. I may not have envisioned the club in this way, but when I opened my mind and perspective, I could see that I have, in fact, made a dream come true and successfully moved towards fulfilling what I’ve come to believe is my destiny.

The other dream I’ve had is to somehow build upon my blog. I’ve thought about ways to shape it into a book and/or develop related products and activities. I have put a lot of obstacles in my way, starting with a lack of confidence. However, the ideas just hadn’t quite gelled in my mind. Finally, I have had some breakthroughs and begun to write and explore aspects of my blog that can become a meaningful resource.

It’s a big challenge for me to be brave enough to acknowledge what’s inside of me in terms of my capabilities and potential. I will have to work hard to feel and maintain the self-confidence to continue to believe and dare to make my dreams come true. Throughout grief, I’ve taken a lot of time to reflect, largely sharing those reflections in the blog. I don’t think anyone ever really figures out life because there are always twists and turns. For me, that process of reflection has allowed me to explore who I was, who I am and who I want and am meant to be. I think Merida was right when she said, ““Our fate lives within us. You only have to be brave enough to see it.” I feel that I’ve made progress in my journey by virtue of being at a point where I’ve begun to take some leaps of faith. Of course, a little Bibbidi Bobbidi Boo wouldn’t hurt!