Walt Disney was born on this day, December 5, in 1901. 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.
So, in honor of Walt’s birthday, I have put together just a few of his quotes that are special to me.
“That’s the real trouble with the world. Too many people grow up.”
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.”
“Laughter is timeless, imagination has no age, dreams are forever.”
“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 hope we never lose sight of one thing-that it was all started by a mouse.”
“Why be a governor or a senator when you can be king of Disneyland?”
Happy Birthday, Walt, the consummate child at heart!
My cat, Disney, celebrating Mr. Walt’s birthday, along with Duffy (X 2) and Eeyore!
The lyrics from the song “Remember Me” were very emotional.
Remember Me Lyrics from Coco
Written by Kristen Anderson-Lopez and Robert Lopez
Performed by Miguel, featuring Natalia Lafourcade
Remember me
Though I have to say goodbye
Remember me
Don’t let it make you cry
For even if I’m far away I hold you in my heart
I sing a secret song to you each night we are apart
Remember me
Though I have to travel far
Remember me
Each time you hear a sad guitar
Know that I’m with you the only way that I can be
Until you’re in my arms again
Remember me
Today I went to see the new Disney movie, Coco, which opened on Wednesday for Thanksgiving weekend. It highlights Day of the Dead, which is a favorite unit of my Spanish language classes, who are often surprised to learn that it is not just “Mexican Halloween.” We make calaveras, the decorative skulls, and we talk about the concept of how the spirits of loved ones who have passed away are believed to come back to visit their families on that holiday. Their spirits live on as long as they are remembered by the living who loved them. I always tell my students that although I don’t really celebrate Day of the Dead, I am moved by the idea that the spirits of my parents and Ben would come back to me every year, but that I often feel that they are watching over me.
July 2014. Trying on sombreros at the Mexican pavilion never got old with us!
2006, before Ben’s ALS diagnosis
I have always looked forward to the new Disney and Pixar films. I was definitely intrigued by this movie because of the theme. When Ben and I went to Walt Disney World, I did love the Mexico pavilion at Epcot, where the artisans could be seen making beautiful Day of the Dead crafts and spirit animals. As I took my seat in the theater, I thought about how one of Ben’s and my favorite traditions was going to the Thanksgiving Disney movie release on opening day, or opening weekend. As his ALS progressed, that became more difficult, until it became impossible. Today, I missed him terribly and felt very lonely and alone. Some things- particularly Disney things- will never be the same without Ben.
Coco was absolutely beautiful, but very emotional, given my own losses. For one thing, the character Coco is young Miguel’s great-grandma, who is delighted by her great-grandson, although her memory of him and of everyone, is fading. But, Coco is loved and respected, cared for by the whole family. I was happy to see Disney tackle the issues of respect for the elderly and memory loss in a sensitive, touching way. But, it was also poignant, since it echoes my own experience with my great-aunt, with whom I was so close, but who now seems to know that I am familiar, but does not know who I am. Since she does smile and get animated when I visit her, I comfort myself with the belief that memories of me are somewhere in her mind. I cannot have the same relationship with her, but I continue to visit her and take comfort in making her laugh and smile without dwelling on that she does not know my name, or that I am her niece, the daughter of her sister, whom she also does not remember.
Also integral to the plot is the profound love of and connection to music that Miguel feels to his core. Ben would have strongly related to that. Playing music and recalling lyrics that resonated with him were key to who Ben was. I took comfort in knowing that Ben would have enjoyed Coco‘s emphasis on the vitality of music.
Since my birthday and Halloween, I’ve been struggling with missing Ben so much. This was our favorite time of year and there are constant reminders of him that make me feel very alone. Although it unnerved me and had me in tears at various points, Coco was a powerful, and, actually, a positive reminder that Ben, my mom and dad, my grandma and all of the other people I’ve loved so deeply but lost, are always with me in my heart. I was fortunate to be able to tell my dad, my grandma and Ben that I would never forget or stop loving them. Remembering them keeps them close to me always and, very significantly, it keeps their spirits alive. Sometimes that’s not enough, like today, when I wanted to be sitting next to Ben and holding his hand, knowing that as soon as he would have seen Coco he would have handed me a tissue and I would have started laughing through my tears because he knew exactly what tugged at my heartstrings.
In typical Disney fashion, it is a movie that can be enjoyed by children of all ages. It is vibrant and colorful and fun, yet it also carries important messages for all of us about life, aging, love and loss. Ben would have loved, as I did, that there was even some Spanish language in it!
Donald Duck hangs out in the Mexican pavilion at Epcot but I don’t know how much Spanish he spoke!
I spoke to my students yesterday about the importance of gratitude, whether or not you celebrate Thanksgiving. When things are not going well, it helps to think of even the tiniest thing for which to be grateful- be it a favorite song or snack. Once you begin to think of those little things, you may very well find that there are many of them. I could see that what I was saying resonated with many of them, and I could see them perk up when I said that I have done that myself. Indeed, feeling and expressing gratitude has been a super power that’s helped me throughout caregiving and grief and emotions that have turned me Inside Out. What more appropriate time to summon gratitude than Thanksgiving?!
Grief is filled with ebbs and flows of emotion, and at times, I give into the loneliness and memories of the ugliness of cancer and ALS, the messiness- emotional and physical- of caregiving, as well as the profound sadness over my losses (A little more than two years have passed since Ben left this world, and it’s almost four years since I lost my dad.) The sadness is magnified around a holiday like Thanksgiving, which reinforces that I’ve lost the family to which I was so close. Thoughts also resurface of Thanksgivings spent in the hospital with my dad or at home with Ben, when he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. And yet, although it was easy to lose sight of it at the time, Ben and I did have things for which to be thankful. Being able to feel gratitude was indeed a super power, because it gave us perspective that allowed us to always see the love that was there. I have been feeling down and alone lately, and reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.
“The more you are in a state of gratitude, the more you will attract things to be grateful for,”
said Walt Disney. It certainly feels good to conjure gratitude, though when you’re facing a terminal illness like ALS or cancer, it seems almost disingenuous to think that you can put yourself into a state of gratitude and that you can attract things to be grateful for. Ben lived in a state of denial about the progression of the disease, and I lived in a state of bracing myself for what might come our way, more relieved than grateful for any day without crises. As time has passed, I’ve learned that being “in a state of gratitude” is not to naively play the Glad Game and turn situations around like Pollyana did. It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the very important power of perspective. I have a good cry when I need to, or when something triggers it, but I can also shift my focus to aspects of these experiences that compel gratitude. Once I’m thinking about things to be grateful for, I realize that I have quite a nice list. That’s a good and humbling feeling.
At the top of my list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving surely was not easy, but it was the most important, valuable, loving and rewarding thing I have ever done. I could not save them, but they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. I treasure the knowledge that they loved me.
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, while I was caregiving and then, in grief. Their spirit extended to Ben as well. When family didn’t step in or made empty promises to him-and there were indeed disappointments and dramas-Ben and I could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben remains in their hearts.
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, since today is the anniversary of the release of Toy Story, I must note that Buzz Lightyear was Ben’s very favorite Disney super hero. I am so grateful that even when Ben was feeling weak and somewhat defeated by ALS, Buzz brought him so much joy and laughter. This video clip is one of my very favorite memories. I am so grateful to have these memories.
Walt Disney also 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’m grateful to have settled into my life, enjoying many of the things I always loved, like going to the theater and spending time with friends, particularly friends I have not been able to see in quite some time. Yes, there is still loneliness and aloneness, but I never lose sight of how fortunate I am to be surrounded by wonderful people, a lot of love, and to carry with me in my heart very beautiful memories.
As I’ve said, I lost myself in caregiving but I also found myself. I discovered that I am a caregiver to my core, and I am pursuing my certificate as a caregiving consultant. I am grateful to have met some wonderful people who, tragically, are experiencing ALS as patients or caregivers. Sharing our experiences is emotional and powerful. I’m 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 to be teaching in a new and wonderful public high school. Not only is it a healthier environment, but it allowed me to start fresh, away from my old school and the memories it held of the crises, illnesses and, ultimately, the losses of my dad and Ben. It is also an opportunity to redefine myself beyond being seen only as Abby, the person everyone marveled at and felt bad for because I spun in circles juggling caregiving and teaching; Abby the caregiver and the Daddy’s girl who lost her dad and then her husband, even though those experiences are an integral part of me. Not exactly who I am now, but as Walt said, I’m opening new doors and finding my way down new paths.
There are and there will be setbacks and I am consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad proud. I am cautiously optimistic about starting down a new path to see where it leads. 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 I’ll be okay because I have the super power of gratitude that gives me a positive perspective.
Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief.
Happy Thanksgiving.
With all good wishes,
Abby
Halloween 2010 Walt Disney World. Cinderella’s Wishing Well. Always wishing for a cure!
Since my blog is inspired by a love of all things Disney, I want to acknowledge the birthday of my favorite Mouse! You may turn 88 today, but you are the eternal child who brings out the inner child in all of us. I know it’s Minnie’s birthday, too, and I also wish her a Happy Birthday!
You and I go back a long time. My mom loved you from the time she was a child and she passed that love on to me. She was in her 50s when she and my dad went to Walt Disney World for the first and only time, and without me! But, I will never forget her phone call, giggling as she exclaimed, “Abby, I met Mickey!” This picture was taken on that day, and it is my favorite picture of my parents because, for me, it captures my mom at such a happy moment with her inner child aglow, and my dad was so amused. When I picked them up at the airport, my mom deplaned like the other children, unabashedly carrying a big Mickey Mouse in her arms. My mom was the consummate child at heart, and I get that from her!
My parents with Mickey in 1987
When I first started dating Ben, he was not as obsessed with Disney as I was. That changed quickly, and our first dates often began with a stroll through the Disney Store that was near our office (we met at work). We went to every new Disney film on opening day and we practically studied the Disney Catalogs, which, sadly, are no longer published. I found several copies that he kept because he loved the covers and I’ve kept those.
We went to Walt Disney World several times together. Our first time was for my birthday, and we discovered the relatively new Mickey’s Not So Scary Halloween Party. Little did we know that we would be completely captivated by this event. We planned almost all of our visits to Walt Disney World around Halloween (and my birthday!)
Our first visit to Walt Disney World together! 2001
After Ben’s ALS diagnosis, we immediately booked a trip to Walt Disney World. We didn’t know what we were dealing with, or how much time we had, and we wanted to go to the place that made all our worries disappear, at least temporarily.
Epcot, Walt Disney World, Halloween 2012
I admit that I was the one who had to greet all of my Disney friends. Ben sometimes joined me for photos, and sometimes he just took pictures and laughed at me. But, with you it was different. He always wanted to see you (and Minnie). And, after his ALS diagnosis, it was emotional. While some people just see actors, I believe that to visit Walt Disney World is to embrace the fantasy and the whimsy and, besides, I believe in you. With an ALS diagnosis, you want to feel the pixie dust, and more than once I asked you for some magic. I do remember that a sensitive cast member saw that Ben’s meeting with you was deeper than just seeing a favorite Disney friend. As we left, he handed me a “diamond” that he told us was found by one of Snow White’s dwarfs in the mines, and he said he hoped it made our wishes come true. I still have it. It may not have fulfilled the wish that ALS would be cured, but I still believe that it helped us to create many wonderful memories. I thank you for that.
For as long as he could, Ben would insist on walking to stand in his pictures with you. It was truly touching when you spotted Ben in the electric wheelchair, helped him up and escorted him to the area where photos would be taken. He rode up to you when he lost the strength in his legs. It was then that I was hit with the reality of his situation. It might seem strange that this moment was a revelation, when I was living with his ALS. But, living with something didn’t mean I really reflected on the entire situation. We adapted to the issues as they arose without really looking at them as milestones in the progression of the disease. Ben also had an incredible attitude, and he was determined to engage in life.
Mickey’s Not So Scary Halloween Party 2012
2012- A subtle but significant change: Ben stayed in the scooter when he met Mickey Mouse.
You and your friends brought us a lot of joy at very trying times. You welcomed us into your kingdom and gave us fantastic memories. Since he has been gone, you have continued to entertain, console and inspire me. My memories of our times with you keep me smiling, even though there are also tears.
No caption needed for the joy in this photo!
Happy Birthday, Mickey. May you continue to be the spark of hope and happiness for children of all ages.
Today is Veteran’s Day, and yesterday was the 242nd birthday of the United States Marine Corps. Because of these events, Daddy is probably on my mind even more than usual. I’ve written about how the USMC was so important to my dad (click here for more). He was such a patriot. He was also grateful to get such wonderful care at the VA Hospital and ultimately, in the palliative care unit. I was grateful for that, too. It certainly is not the case at all VA Hospitals around the country. And, I was grateful to have had the experience of meeting many veterans in that palliative care unit and feeling their dedication to this country. It fueled the pride in this country that I already felt, and as well as my devotion to the men and women who fight to keep us safe.
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. But, he genuinely cared about these “kids,” as he called them. He felt they were the disenfranchised, abandoned by the government and that the general public did not relate to them.
Since today is Saturday, Veteran’s Day, yesterday it was “observed” as a legal holiday. However, NYC public schools were not closed. My students asked me about it. I said my dad would be very upset. He would say that not keeping public schools closed is one more demonstration of the lack of respect for and appreciation of veterans. That makes me very sad and disheartened. It also bothered me because these public schools are places where military establishments target recruitment efforts. Over the years, I’ve learned that many of my former students joined the military. It would seem to me that the public schools would want to ensure that this holiday was honored, because many of their students will become veterans. Show and model respect. Encourage students to demonstrate respect for this country and for those who serve and put their lives on the line to protect it.
My thoughts are drifting frequently to my dad and his stories of days in the military. I know that he would be devastated by the state of affairs in this country under its current administration. However, he would continue to wear his USMC cap, proudly smiling if anyone thanked him for his service and eager to share stories. For that reason, with all of the patriotism that my dad instilled in me, I honor him and all veterans on this day, with a particular birthday shout on to the USMC! Semper Fi! Thank you for your service!
