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
Though I have to say goodbye
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
Though I have to travel far
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
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!
2012- Mickey’s Not So Scary Halloween Party. Ben took center stage in the scooter!
My third Halloween without Ben. Though it is not traditionally a romantic holiday, for me it is, because it is the day that Ben proposed to me at Walt Disney World. I still have not been able to decorate with our Disney Halloween decorations. As I watched the little kids going to school in their costumes, I remembered how much Ben and I loved to see the cute children at Walt Disney World. I know that if he was still here, that I would have returned home to find him watching our Walt Disney World Halloween videos, bopping his head to the music and saying “Boo to You!” as they say in the parade. We would have looked at the photos and videos together and laughed at the memories while we fantasized about a new visit. Even when the ALS was progressing, Ben constantly went on the Walt Disney World web site to plan fantasy holidays. Frankly, I think it was healthy and helpful to him to stay hopeful and engaged in life. It’s hitting me hard that although I am so grateful to have the wonderful memories, I am saddened, and feeling a little lost, that I can no longer look forward to Halloween Disney adventures with Ben. That’s a tough part of grief. As I feel like the sharp pangs lessen a bit, the day to day realities, and thoughts of an unknown future, unexpectedly set me back.
One of my favorite memories, though bittersweet. After his ALS diagnosis, Ben was reluctant to meet Buzz, because he said Buzz was a super hero and he was weak. When he did decide to greet him, Buzz made such a fuss about Ben’s Buzz shirt (his Halloween costume) and Ben loved it. It gives me comfort and joy to remember Ben’s delight.
Every day my commuting routine is to listen to a special play list of special “Ben” songs. This morning, after those songs, I listened to the Walt Disney World “Hallowishes” parade music- Ben loved it even more than I did. The music did not comfort me. Although I love to picture Ben’s face watching that parade and saying “Boo to You!” I still grapple with the fact that we will never again enjoy those moments together. I wonder if I will ever want or be able to see it again. And maybe it’s okay if I never do. Maybe those were special moments that were just ours. On the other hand, maybe one day I will want to return to Mickey’s Not So Scary Halloween. That will be okay, too, because Ben will always be in my heart. He will always be present, just in a different way. Unfortunately, on a day like Halloween, it is not quite enough. I need some pixie dust or some bibbidi bobbidi boo!
This year, I baked Halloween cookies. Baking and decorating cookies is almost meditative for me.I call it my therapy. It also keeps my grandma close, since she taught me my great-grandma’s recipe, and it keeps Ben close, because he is the biggest part of any Halloween tradition and he loved when I baked cookies, teasing me about my elaborate processes. On the ghosty-ghosts (what we always called ghosts) I wrote “Boo to You!” because I know Ben would have loved that, so it gave him a sweet, special presence in the holiday that is uniquely ours. I need that.
Halloween cookies honor Ben and involve him in the holiday.
Now, I feel like a Halloween observer rather than a participant. Maybe it won’t always feel that way, but I do feel terribly lonely, and out of place. When it comes to Halloween, I’m only at home in the memories, so I will delve into those this evening as I look at our photos and videos.
As I think about the holiday this year, and reflect on my Halloweens with Ben, I realize that my post from last year still rings as true this year, and give me a positive perspective, so here are my words and memories of our most magical Halloween ever, at Walt Disney World- IN JULY!
Meeting Monsters Inc Sully and Mike. Ben LOVED Sully!
Halloween was the most fun holiday for Ben and me, especially when we were at Walt Disney World for Mickey’s Not-So-Scary Halloween Party. Halloween is extra special for me because Ben proposed to me at Walt Disney World on Halloween. It was very exciting and, of course, I told all of my Disney buddies! Ben never tired of teasing me about my ability to talk to all of my friends. Why wouldn’t I?!
There are so many videos and photos of our amazing times, but, of all of the fun Disney times we had, I think that a most poignant memory was the Halloween celebration we had back in July 2014. That’s right, July. This was a very special trip, because I think that Ben and I both knew that it would likely be our last visit to Walt Disney World, as Ben’s ALS was progressing more rapidly. I wanted it to be a most incredible trip with lots of surprises.
Traveling to Walt Disney World was stressful but Ben really did have an amazing attitude. I will write some of the details to give an idea of considerations that have to be made when dealing with ALS and other disabilities. I think it was a combination of realism, naivete, determination and pixie dust that enabled me to make these plans! First, we needed to bring another caregiver. I was advised by Ben’s doctors and the ALS team that I should not do this alone. Ben wasn’t happy about it, since another person did change the dynamic, but he had to relent and I had to be strong, since I was nervous about how much assistance he required. Getting to the airport was a bit complicated, since Ben was pretty much homebound at this point. I had to hire an ambulette service to get him down the stairs and safely to the airport. I contacted JetBlue, which was great each time we flew, before and after Ben’s diagnosis. They helped me to choose seats and let me know exactly what to do when we arrived at the airport. We were taken through security with relative ease and he was literally lifted and placed into his seat by a very kind and accommodating crew, one of whom revealed to me through tears that his brother had ALS. Ben was calm and in good spirits, while I was a smiling nervous wreck!
Disney’s Guest Services Department was very helpful and supportive when choosing a room, coordinating transportation to the hotel with a bus that had a wheelchair lift, and arranging for the electric wheelchair to meet us at the hotel. They even put me in touch with a local pharmacy that delivered Ben’s nutrition supplement to the hotel. It was waiting for us when we arrived! We had a room with a roll-in shower, which was such a treat for Ben. We take a lot for granted in life, don’t we?
Ben even had fun on the Magic Express wheelchair lift!
This was going to be a very different trip because so much about Ben’s physical abilities had changed. Ben wouldn’t be able to go on his favorite rides, Pirates of the Caribbean and the Haunted Mansion. Eating was also a big challenge. Because of these obstacles, I wanted to arrange surprises for Ben that would be fun and unusual. Ben knew I had surprises in store, but he didn’t know what I had planned.
Disney has a wonderful Floral and Gift Department (click here to visit the site) that offers a variety of gift packages that can be delivered to your hotel room. They had a Halloween package but it was available during the Halloween season. I called and explained our situation, making a special request for a Halloween hotel room even though it was July. Disney is about magic and dreams come true, and they did not disappoint! When we arrived at our room, outside was a banner that said “Spooktacular Halloween July 2014!” It had a pumpkin with blinking lights. Ben thought it was a promotion for Mickey’s Halloween Party, but he still got excited. When we opened the door, the room was like a little Haunted Mansion and Ben was completely shocked, thrilled and emotional. I thought that if a full day at the parks was difficult, the room would also look very cool, and indeed, it did, but Ben did great at the parks! I was the one having a hard time keeping up with his zipping around in the electric wheelchair!
Since we were bringing Ensure to the parks in case eating was a problem, I had also ordered from the Gift and Floral Department an insulated backpack with some goodies. Also, we were joined by a giant walking Buzz Lightyear balloon. Here are pictures of some of the magic.
Ben was excited just to see the banner! He had no idea what awaited him inside!
Mickey Mouse and Minnie Mouse all dressed up for Halloween in July!
Treat baskets in our room, and a projectable haunted house that shone a haunted house on our ceiling!
The candelabra in our haunted hotel room!
Our hotel room was very fun!
I learned that there was a Pirates and Pals Fireworks Cruise with a party where you could meet Captain Hook and Mr. Smee. When I found out that the boat was accessible, I had my next surprise for Ben! The day of the cruise, I gave him as a hint a little pirate coin I’d found at one of the gift shops. His first guess was that I’d arranged for him to go on Pirates of the Caribbean, which, sadly, I couldn’t do. We took the monorail (also accessible) to the Contemporary Hotel, where the party began. Ben laughed when he saw the really great pirate-themed decorations. We were given bandanas, too. One of the truly brilliant aspects of the Disney team is that they never make someone with disabilities feel uncomfortable. A cast member came and escorted us with no fuss on an accessible path to our boat. The cruise was so much fun, the fireworks looked magnificent from the water, and, as a surprise, Peter Pan was on the dock to greet us when we returned! OK, so I was more excited than some of the children! There were tears and there was joy as we listened to the “Wishes” fireworks lyrics, but watching the delight on Ben’s face is something I will never forget.
At the Pirates and Pals Fireworks Cruise Party with Captain Hook and Mr. Smee.
Ben loving the Pirates & Pals Fireworks Cruise.
Ben had not had a proper haircut in a few months, so I arranged for him to have a haircut and shave at the Main Street Barbershop. He was a little bit apprehensive, but, as I’ve said, he had such a great attitude, and he ended up having a great time. The staff accommodated his electric wheelchair and made him completely comfortable. Outside of the barbershop he met up with the Dapper Dans, the singing quartet he loved.
Ben got a kick out of getting his hair cut on Main Street, especially because it was decorated like an old fashioned barber shop.
The Dapper Dans were very cool! Ben always loved them.
We loved our usual attractions, and Ben loved the new Little Mermaid attraction, where his wheelchair could go right into the clamshell. Of course, we were happy to see our friends.
Buzz was one of Ben’s heroes, but he loved Woody and friends, too!
We visited the Wishing Well at Cinderella’s Castle, which was emotional. We also became overwhelmed when we met Mickey and Minnie at Epcot. Maybe it’s silly, but when dealing with something like ALS, you just want to believe in magic, or something, that will make things better. People sometimes ask me how I can believe in Disney magic, or that dreams come true. I just do, even when it’s difficult. After all, Ben did okay with ALS for about 4 years, and we were fortunate to be able to travel to Walt Disney World many times, even after his diagnosis. We shared a lot of love and wonderful memories that he relived daily as he looked at our many photos and videos. We even had Halloween in July! And, he left this world surrounded by music, love and even Disney. Maybe it’s a matter of perspective, but I feel the pixie dust.
At the Walt Disney World Wishing Well at Cinderella’s Castle
Today, October 27, is my birthday. My third birthday without Ben. I guess I still measure time and mark events that way. I have dreaded my birthday, as I have since he’s been gone. It’s hard to deal with the conflicting feelings- that childish delight about a birthday mixed with the sadness of not having Ben or my mom, dad and grandma- the people I was closest to- with me, and guilt about continuing to navigate life when they aren’t here and conveying in any way that they are even a little bit forgotten. I’m lacking the happy in happy birthday. But, I will spend time with very wonderful people in my life, and that is special, indeed.
I think a lot about the wonderful birthdays I had with Ben. I preferred quiet birthdays at home, with a simple meal and some dancing. Of course, if we were in Walt Disney World, I dove into the fun. I was so fortunate to have spent several birthdays with Ben at Walt Disney World during Mickey’s Not-So-Scary Halloween Party and the Epcot Food and Wine Festival. I am so lucky to have had that kind of love and those delightfully whimsical and magical experiences. As I’ve said before, Ben let his inner child shine and he completely indulged mine. Well, my inner child isn’t so inner- it’s front and center of who I am!
Here are just some of my favorite Walt Disney World birthday memories with Ben:
The time I asked Mickey how old I looked and he held his hand up and I asked if he thought I looked 5. He shook his head and held his hand up again and I asked if he meant 50. This went on for a while until he held up one finger at a time and I realized that he only had 4 fingers. He looked up at the ceiling and held his hand to his forehead and when I looked over at Ben, he and the PhotoPass photographer were laughing hysterically. Ben couldn’t believe that I didn’t know my Disney buddies had 4 fingers and he said the photographer was laughing so hard that she couldn’t take a picture. From that point on, Ben and I only “high four-ed” each other.
Mickey has Four Fingers!
The birthday holiday we took there when Ben proposed to me. The actual proposal was on Halloween because he knew I would love that. I did.
Mickey congratulated us on our engagement!
Birthday hugs from Pooh, Eeyore, Tigger and Piglet at the Crystal Palace, because I had to have birthday lunch with my friends from the 100 Acre Woods. I was as gleeful as a 5-year-old when the waiters sang “Happy Birthday” to me. Ben surprised me with a cake once and Pooh kissed my hand. I’ve kept all the confetti and the birthday cards.
The little girl at the Akershus Restaurant whom I noticed was intently watching Ben and me as we struggled a bit to get him into a chair and then as I cut his food and helped him to eat. When she saw the waiter bring me a little cake with a candle and sing happy birthday to me, she came over and wished me a happy birthday and gave me a hug. Kids have such intuition, and her mom and I both had tears in our eyes.
Dancing with Stitch and Goofy at the Halloween party while Ben sat in his scooter, laughed at me (with love) and videotaped it. As if anyone who knows me would be shocked!!
Getting extra candy when we went trick-or-treating at Mickey’s Halloween Party because I announced that it was my birthday, probably more excitedly than most of the little kids. Between Ben in the electric wheelchair and my birthday, we did very well collecting candy!
Having so much fun tasting the foods at the various pavilions during the Food & Wine Festival. Even though he needed help with food, and he couldn’t eat everything he wanted, Ben loved to be at Epcot and he didn’t let himself lament what he couldn’t do or eat. His attitude was incredible.
I am grateful to always have those very sweet memories, and so many more. I grieve for the birthdays I won’t have with Ben, and also for the birthdays he won’t have. But, I’ve felt his presence over the past year and I know that he is with me, as are my mom, dad and grandma. People say that Ben would want me to be happy and to celebrate. I’m sure that’s true, but it still doesn’t feel quite right.
The time that my birthday fell on parent teacher conference night. Ben and I had decided that we would celebrate over the weekend instead and it was no big deal. He picked me up at school, as he always did after evening events, and when we got to my apartment, I was delightfully surprised to see that he had decorated with balloons, flowers, a cake and some of my Disney toys all around the decorations. He had done all of this after work and before meeting me. That was Ben-always romantic.
Despite all of the very difficult memories of Ben with ALS and in the hospital and hospice, I am glad to be able to recall with love and smiles, and yes, also tears, all of the wonderful times before our lives changed. Because those times tell the story of who we really were together. Remembering that is indeed a most special birthday gift.
Another gift is having such incredible friends who shower me with birthday greetings and love. For that, I am so very grateful.
Learning about this anniversary brought a big smile to my face, as I remembered how much Ben enjoyed Epcot, and how much fun we had there together. I consider it a gift that, in the face of difficult memories of ALS, our experiences at Epcot were so positive and full of joy.
After Ben’s diagnosis, we splurged and stayed at the Boardwalk Inn, because it was the hotel that always impressed us when we strolled the Boardwalk, and we never know which visit would be our last. As it turned out, the Boardwalk was a perfect location, because Ben could easily scoot to the back entrance of Epcot by the World Pavilions, which he absolutely loved. The World Pavilions have less attractions requiring transfers, so he had the freedom to ride around in his electric wheelchair. As I’ve written in my post about our visits to Walt Disney World, another highlight of Epcot was that during the Food and Wine Festival, we could try a variety of foods from the kiosks and then find a discreet place to sit where I could feed him and we could take as long as needed.
We met Mickey and many of his friends, laughed with Crush, and Ben played the air guitar along with the bands he loved to listen to.
I will always be grateful for the good memories of our time at Epcot, and for the kindness and graciousness with which the Disney cast members accommodated and welcomed Ben.
Thank you, Epcot, and may your anniversaries continue to infinity and beyond!
Here are some favorite memories from visits to Epcot. They range from our carefree, pre-ALS days to our last visit in 2014. You can see some of the physical effects of ALS on Ben, but his attitude was always great!
I took this in “Mexico” during our first visit together to Walt Disney World, in 2001, when there were no thoughts of ALS or physical limitations.
Fun times pre-ALS, 2006
This was Ben’s first excursion in the scooter, May 2010
Epcot shopping in the rain in our matching Mickey and Minnie rain ponchos! May 2010
Ben needed a cane but he walked to Mickey! 2012
July 2014. Things were harder to do, but Ben was still smiling! Below: air guitar at the England Pavilion. He always looked forward to hearing the live bands, and was especially thrilled when they played The Beatles!
I’ve written a lot about wishes. Maybe it’s my belief that wishes can come true that allows me to see, or to look for, the bits of wishes that come true, and remind me of what’s really important.
When my cat, Disney, became ill a few weeks ago (click here to read about that), I sat in the vet’s Emergency Room waiting area wishing for her to be okay. I’m happy to report this update that my wish came true. Some would argue that I’m seeing through Disney-colored glasses, because she has several medical conditions and requires a lot of medication, but her conditions are manageable. And, her kidneys actually improved, which was a great, surprising relief to her vet and to me! She is back to bossy, spoiled and adorable self, cuddly as ever, but most importantly, comfortable and feeling well. I understand that this will not last forever, but what is really important is to treasure this time.
When Walt Disney World announced that the “Wishes” fireworks show was ending, I was a little heartbroken. I find it hard to lose things that were symbolic to our relationship. Ben and I watched that fireworks show during our last visit to Walt Disney World in July 2014 from the Pirates and Pals cruise on the lagoon. We both cried as we listened to the lyrics. We’d seen the fireworks show before, but now we really wanted to believe that our wishes, our dreams, would come true.
Ben loving the Pirates & Pals Fireworks Cruise. That joy on his face is my favorite memory of our last trip.
Excerpts from the “Wishes” Fireworks Show
Hear the music from “Wishes”
Star light, star bright,
First star I see tonight.
I wish I may, I wish I might,
Have the wish, I wish tonight.
Oh, a world of wishes,
A world where dreams come true.
So make a wish, see it through.
Dare to do what dreamers do.
Dream a dream.
Set it free.
Trust your heart.
We’re all just children,
Reaching for our dreams.
They’re shining high above us,
And even though it seems so far (so far)
We put our faith and hope on a shooting star.
You know, any wish is possible. All it takes is a little courage to set it free! A wish is a powerful thing—especially when it comes from the heart.
Remember, we must always believe in our wishes, for they are the magic in the world. Now, let’s all put our hearts together and make a wish come true.
The wishing Well at Cinderella’s Castle. We always wished for a cure for ALS. I still hope that wish comes true.
Some people might have rolled their eyes at my saying that Ben and I tossed coins into Cinderella’s Wishing Well after his diagnosis of ALS. We did wish for a cure. That did not happen during his six-year battle with the disease. As I have written before, maybe it is a matter of perspective, but despite that wish not coming true, maybe we did have some pixie dust, because for four of those years, Ben did okay managing the ALS. And, he always had a positive spirit and tremendous determination. That spirit and the love that got us through the awful times are at the core of what is really important.
Walt Disney said, I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter. I have wished to find ways to cope with profound grief and the physical and emotional toll of caregiving. While I am realistic enough to know that this is a work in progress, my wishing and firm belief in the power of pixie dust allows me to carry the good memories, look for the good moments and recognize how Ben and my dad are always with me. Maybe it’s Walt’s philosophy and my whimsical love of wishing that encourages me to take the time to think about what is really important amidst the conflicting emotions and myriad memories, and to embrace the Bibbidi-Bobbidi-Boo that gives me peace. I wish that for all caregivers and patients with ALS and all diseases.