What Luca Shows Us About Love and Acceptance

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Ordinarily, my posts look through a Disney-colored lens at my experiences as a caregiver and through grief. When I watched Luca on Disney+, it touched my heart in a different but still relevant way, and I felt compelled to write about it. Luca is the story of a young sea monster who is intrigued by the human world and like most pre-teens, he is starting to challenge his parents’ views and attempts to shelter him. Luca’s parents fear the human world and are willing to send him to the depths of the sea to protect him. To rebel, he befriends and runs away with another young sea monster, Alberto, and Luca seems to admire his independence and confidence. What Luca does not know is that Alberto is actually a lonely sea monster who has been raising himself because his father abandoned him.

Luca and Alberto learn that when they are out of the water and dry, they appear to be human. Despite his parents’ warnings, Luca joins Alberto to explore a nearby village on the Italian Riviera, where they conceal their identities, afraid to be discovered because it is a village of active sea monster hunters and villagers who are terrified of sea monsters. In fact, one of the sea monster hunters is the father of Giulia, a girl who also struggles with her identity, who becomes their friend without knowing that they are sea monsters.

Luca’s parents are determined to find him and bring him home. They are as afraid of humans as the humans are of sea monsters. However, their love for Luca leads them to shed their scales and don human forms as they search for him in the village.

After a series of adventures and mishaps, Alberto gets drenched and is revealed to be a sea monster. Rather than defend his friend and show his own sea monster self, Luca pretends to be shocked and Alberto, feeling rejected and hurt, returns alone to the water. Shortly after that, Giulia discovers Luca’s identity. She grapples with the realization that Luca and Alberto are not what she has grown up to believe are sea monsters.

In a revealing conversation, the children find what unites them:
Giulia: You know, we underdogs have to look out for each other, right?
Alberto: What’s, “under the dog’s”?
Giulia: Under-dogs. You know, kids who are different. Dressed weird, or a little sweatier than average.

Without wanting to give away the ending of the film, the film touched me in the way it portrays people who are different. I read in various Disney social media groups that there were people who appreciated the film because they believed it portrayed a gay relationship between the two boys. Of course, there were those who agreed and those who were offended. There were those who found it ridiculous to look for things in a film. For me, what is most important and valuable is that someone watching Luca related to it and felt embraced, validated and understood, that’s all that really matters. The messages I have found in Disney films, whether or not anyone else saw them, are my pixie dust.

I believe that the film showed an overall acceptance of people whom you may see as different. There are people with physical disabilities whose vibrant personalities and intelligence are overlooked. I have written countless times about how Ben was judged because of the speech impairment that resulted as ALS affected his muscles. He was, at times, harshly judged as lazy for being in a scooter at Walt Disney World because his physical weakness was not apparent. There are people with illnesses that are chronic and are not apparent. They are judged for behaviors simply because they are not understood. All these individuals might lack the scales of a sea monster, but they should be seen beyond superficial physical observations. [bctt tweet=”The way I saw Luca, their beautiful and colorful scales made them unique and delightful in their own way. It was the perceptions of others that were ugly and terrifying.” username=”PixieD4Caring”]

Luca’s parents have to let him be who he is. That is not easy for any parent or caregiver. Luca’s grandmother points out that, “Some people, they’ll never accept him. But some will and he seems to find the good ones.” We can only hope that there will be more and more good ones as films like Luca will help to open the eyes and hearts.

Luca is a validating film of acceptance and personal growth. It confirmed for me how powerful films can be in helping us to sort through experiences and broaden our lives. It is also delightful to watch, with its added bonus of Italian language and songs.

40 Years Later, Widow Tweed (“The Fox and the Hound”) Still Gets to the Heart of Grief

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This time of year is always one filled with conflicting emotions. I am beyond elated and relieved that a school year has ended, but there are so many sad memories. Six years after losing Ben, I still find that I rehash events of those days. July 6 is the date I refer to as the day that everything changed- this is the day that Ben went into the hospital. From July 6 until his passing at the end of August, I rarely left Ben’s side as he dealt with a feeding tube, a tracheostomy, pneumonia, infections, a lot of family drama, having to decide how he wanted to live and die with ALS.  July 8th was my mom’s birthday. It was never a good or easy day, but spending that day with Ben in the hospital, not knowing what was going to happen to him, made it that much more stressful and compounded the emotion of this day.

Ordinarily, I don’t make plans for milestone dates. I do not punish myself or insist on any kind of ritual of sadness. There have been years that I could barely get out of bed and surrounded myself with Ben’s favorite Disney movies and The Little Mermaid, a film my mom and I had a great time watching together. Sometimes, I have just wanted to stroll through Central Park, feeding the turtles and the squirrels. I accept that I never know how I am going to feel, and I allow myself to follow my mood. I do not generally argue with people who tell me what I “should” do, but I also don’t listen to them.

This year, I made plans to visit my forever friend, Dorie, and her husband Damian, during the time that spanned both dates. When we chose those dates, I did think about the milestones, but I did not feel conflicted about going away. I took Amtrak on July 6, which reminded me of the many long weekends Ben and I took on the train. Ben loved the train- even a seven-hour ride to Vermont! I miss those rides with him and the romantic getaways. During my ride to Dorie’s, I did, however, find myself smiling rather than crying at the memories. Of course, we all find ways to rationalize things, but I believe that Ben would likely be pleased that I was doing something that would remind me of him and of us.

The milestones were definitely on my mind on those dates, but I was okay. I am fortunate and grateful to have wonderful friends who are patient with my sharing of memories but who help me live in and enjoy the present while I keep Ben and my mom in my heart.

I do have to admit that I was torn about buying tickets to see Bruce Springsteen on Broadway on the anniversary of the date of Ben’s leaving the world. I had clicked on every single date and that was the only available date (at a barely reasonable price). It took a while to confirm the sale as I wondered if I could enjoy a concert, or anything else, on that date. I decided that I won’t know if I don’t just go, and hopefully, since Ben loved music so much, I will especially enjoy it through his eyes and with him in my heart. I generally believe in signs, so I would like to think that my finding a ticket on that date was a sign from Ben that it is okay, and I should go. Still, I am conflicted and hoping that this event works out as well and as enlightening as my visit to see Dorie.

The Fox and the Hound celebrated its 40th anniversary last weekend, on July 10. I have been thinking a lot about the quote from the heartbreaking scene when Widow Tweed tells Tod that “Goodbye may seem forever, farewell is like the end, but in my heart is a memory and there you’ll always be.”  This year will mark six years since Ben left the world, and I realized last week while I was away that I am getting better at balancing the memories and the love with being in the here and now and, looking forward. There is a tinge of discomfort at smiling and carrying on with life, but not a sense of guilt or emotional paralysis that leaves me on the sofa. In a way, has become a comfort that as I keep going, there are always memories that keep my loved ones close. They are not always good memories, as in Ben’s going into the hospital, but I will say that more of the love stands out than the bad times or crises.

I have occasionally been told that writing my blog posts keeps me in the past and in grief. I disagree. As I revisit previous posts and look back at how I coped with the milestones over the years, I see that there has been a shift in my thinking and in my embracing of life. I see that I have made strides and have come through my experiences knowing that although my confidence is not strong, Christopher Robin was absolutely right that “You are braver than you believe, stronger than you seem and smarter than you think.”

I hope that this post serves as some comfort and encouragement to anyone experiencing grief. Our timeframes and strategies for coping may vary, and we will probably always navigate unexpected ups and downs, but the memories and love always remain in our hearts.

Dorie and I in Skaneateles, NY

 

Happy Stitch Day! Old and New Memories!

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ALS, Walt Disney World, Lilo and Stitch

The very first time we met Stitch, October 2006!

On June 19, 2002, Lilo and Stich (Walt Disney Pictures) was released. But, today is Experiment 626 Day! I have loved Stitch since I saw that film. When Ben and I went to Walt Disney World and I had read that Stitch could be found at the Magic Kingdom, I was on a mission to find him. Ben was very patient!  In honor of the film and my buddy Stitch, here are some photos from our visits to Walt Disney World over the years. Ben liked taking pictures of me with Stitch because he was my good buddy and Ben got a kick out of that. I look at those photos and even though Ben was the photographer, in my mind and in my memories, he is so present in those moments and I can vividly see him laughing. I am so grateful for these memories. I am equally grateful that I had an opportunity to create new memories with my buddy Stitch, when I returned to Walt Disney World in 2019. It was a wonderful time with Monica, Snappy and Andi, and an important milestone and lesson that I can return to this place that is such an important part of Ben’s and my story, keep him in my heart and even feel his presence, but step forward to live, love and laugh.

Halloween with my buddy in 2010. Ben could still take photos at this point, which makes this picture especially sentimental.

I think the funniest memory I have is from our 2012 trip. Walt Disney World has many and great accessible restrooms, which made life much easier for Ben. I would get Ben situated and wait outside because he couldn’t walk to lock the door. Also, I could hear him if he needed assistance. One day, while I was waiting for Ben, Stitch walked by and I yelled hello to him. OK, yelled a lot, with much waving. Moments later, Ben called to me. As I helped him into his scooter, he couldn’t stop laughing, imitating my calling Stitch and saying that he started wondering how he was going to get himself out of the bathroom because he knew Stitch was one of my favorite friends and he thought I might abandon him! I did not! And, I’m not telling if I thought about it!

I love this little guy!

I hunted him down at the Animal Kingdom in 2007!

On our last visit in July 2014, Ben knew that one of the things I had always wanted to do was have breakfast at the Polynesian Hotel with Lilo and Stitch. I had not mentioned it because it was a long commute from our own hotel and I didn’t want to tire Ben. But, he wanted us to have that experience. I think Ben wanted to laugh at me gushing at Stitch, which, of course, I did! Stitch was his adorable self, as was Lilo. They were very attentive and considerate of Ben and his inability to get out of his seat. It was an incredible time that I will never forget, particularly wonderful because it was a brand new memory, as opposed to memories we were trying to recreate to almost try to turn back time to the days before ALS. I will never forget the magical connection that Ben and I felt when we were at Walt Disney World.

July 2014, Breakfast at the Polynesian Hotel.

Stitch gave Ben some extra love!

Making new memories at Walt Disney World 2019

Happy Stitch Day!

With Love For My Dad on Father’s Day

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Each year, it is with pride, love and sadness that I write about my dad on Father’s Day. Much of what I write is the same. Still, the memories bear repeating, as they live within me and honor my dad. 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, the holiday itself does not really bring me down. After all, I already miss him. The hardest part of holidays like this is the reminder that the people I was closest to are not here anymore (click here to see that post).  I do believe that they are always with me, and watching over me, and that is a comfort. But, 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, but today I want to summon the loving and good memories, because I never lose sight of how fortunate I am to have them. Believe it or not, he was not a huge fan of Disney or animation, but when I showed him videos of my Walt Disney visits with Ben, he beamed because he said he loved to hear me laugh and happy.

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.

My dad and I spoke several times a day. He even called my cats! He was a very good Grampa to my first cat, Tiffany, and then, to Disney, and he spoiled them just as he spoiled our dogs. I knew that when I went out, I would come home to a message on my answering machine with him calling my cat to say that it was a grave injustice that Mommy left her alone. They even got packages of treats and toys, addressed just to them! Even six years later, I miss that. I tell Tinker Bell about her Grampa and that he loves her from heaven. With all of the chaos in the world, I miss getting his perspective, particularly given his extensive knowledge of history and the military. When my aunt, his sister, asks me what Daddy would say about the state of the world, we agree that there would have been many phone calls and there would have been a lot of yelling. I know that what is happening would have devastated him- he was a proud Marine and a patriot through and through- so I’m grateful that he’s not dealing with it, but I miss the comfort of his explanations. I did trust his judgment on world events. 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!

This year of teaching remotely has brought families into my virtual classroom. Despite the struggles, I found it heartwarming and fun that many parents, grandparents, siblings and cousins listened to the lessons and chimed in with their own memories and thoughts. I think about how Daddy’s caring extended to my students. The reality for some students is that their families are not involved in their education and they certainly don’t talk about their classes. I often joked with the kids that my dad worked harder to learn Spanish than they did, watching the Spanish television stations and calling me to clarify what things meant. I let them know that he pitched in funds for art supplies that we used in our projects. When I told him about students who couldn’t afford graduation activities, he was right there to help. Although I didn’t talk much about his condition and experience, my love for my dad was obvious and they knew when my absences were due to his having a medical procedure. I was always moved when parents showed up at parent conferences asking how he was. That was my dad and it has become a part of me. I like to think that his example has stayed in the hearts of my students, too. I firmly believe that compassion and love are more important lessons than properly conjugating a verb in Spanish.

I’ve been looking through old photographs because they do bring me joy despite some tears. It’s hard to find photos of my dad and me together because he was usually the one taking the photos. He loved capturing silly and sweet moments, often with our dogs. When I look at some of photos that he took, I know exactly what he was thinking, or what joke or prank he had in mind, and that, in itself, makes me smile. Daddy had the best giggle, which was kind of funny for a USMC!

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

Today, I will try to remember that Daddy never wanted me to be sad. I cannot count the number of people who stopped me to tell me that I was my dad’s world. He was the consummate pessimist, except when it came to me and my potential and I was his consummate cheerleader. Since he was quite a character, a lot of nurses blessed me for my patience, which always made me laugh. I can’t even imagine his frenzy over the coronavirus. I still can’t shake the thoughts of how I would have managed caring for him and for Ben if they were here.

Camera on his shoulder, Daddy always wanted to be the photographer, not the photographed!

When Ben was ill, despite fighting cancer, my dad never failed to think of how he could help Ben. I think that on a certain level, he felt connected to Ben because they were both facing death. But, the gadgets that my dad found to make help Ben with dexterity were so genuinely appreciated. I was always surprised to find that Ben called my dad to check on him and to chat, but my dad became Ben’s dad, too, and that, in itself, is a special memory. Daddy called Ben a gentle soul- I think they were both gentle souls. I wish I had a photo of the three of us.

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. 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.

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

 

Being like Hercules- Going the Distance in Caregiving, Grief and Life

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Disney,Hercules,Grief,Caregiving

Hercules (1997)
Walt Disney Pictures

Disney’s Hercules opened on this date in 1997. It made me think of the Herculean tasks of caregiving, grief and recreating my life. After nearly six years without Ben, I still find myself thinking I am on my way. I can go the distance.  Somehow, I wonder if I will ever get where I’m going and if I will know where I belong if/when I get there.

I think back to caregiving days and I often had to cheer myself on and cheer on Ben and my dad. Ben was actually great at motivating himself. I can picture him singing this song from “Hercules” with a big smile on his face. I still have such great admiration for how he was inventive and determined to maintain as normal a life as possible despite the abilities ALS was stripping away. I was there to help him accomplish his goals, make him smile, and do for and with him what he could not do on his own. Although it was heartbreaking, and at times very tense, we did have a lot of laughs. But, he really did strive to go the distance, right up until he left this world. I remain in awe of his bravery and strength.

My dad was another story, spending seven years counting down to his impending demise. We joked about his negative attitude, but at times it did drain and frustrate me to the point of tears. I was his cheerleader, and it did give me immeasurable joy and satisfaction to hear from him and from so many people that I was his life. I was a Daddy’s girl, and he was my life, too. My dad loved history, he was a very proud Marine, and he loved to read. I spent much time calling him from bookstores to read aloud book jacket descriptions of new books about World War II. It was hard to find books with an angle he did not know. When he asked a lot of questions about a book I described but concluded by saying that I should not buy the book because, “where I’m going I won’t need books,” I knew I had a winner. Ben and I also found lots of World War II documentaries for my dad to watch, and he and I frequently watched one of his favorite films, Mrs. Miniver. I had to go the distance and be strong to find ways to give my dad strength and optimism. That was indeed a Herculean task!

Living with and succumbing to a terminal illness is indeed courageous. Caregiving, too, requires super powers. When I was exhausted, or feeling downtrodden as a caregiver, I had to force myself to believe that I could be strong and that I could “go the distance.” Sometimes, it was a matter of reflecting on the difficult time that Ben and my dad were having, physically and emotionally. I was the caregiver, but they were the patients. I think back to the times that I just managed to keep Ben from falling, which, given my own lack of coordination, was quite a surprising feat to accomplish, and in those instances, he called me Wonder Woman. He even got me a Wonder Woman t-shirt. Those shows of strength did take a physical toll on me, but every mile was worth my while. I knew that I belonged at Ben’s side. And, in retrospect, I learned a lot about myself in that process. It brings me to my favorite Christopher Robin quote, “You are braver than you believe, stronger than you seem, and smarter than you think.”

Managing grief has been another Herculean task. The ups and downs have been become less jarring, but I cheer myself on, more successfully on some days than on others. I have definitely stepped back into the world of the living again. I am more comfortable in, or better resigned to, my routine of living alone, and I enjoy with less guilt the freedom to socialize and to do things I love, like going to the theater and traveling (with the exception of COVID restrictions). I find peace and inspiration during my strolls through Central Park, where I do see signs of Ben from time to time. Ben remains very present in our apartment in photographs, things of his that give me comfort, and things of ours that bring good memories.

When I think of the future, I still have to convince myself to go the distance. It’s not easy for me to perceive myself as strong, though intellectually, I know that I have shown physical and emotional resilience over the past several years. I have blogged about my memories, and living with my present, but the future remains daunting. I am doing more writing and exploring ideas with regard to caregiving kids, trying to see beyond teaching, which, although rewarding in many ways, is very stressful and a constant reminder of my gut feeling that I was never meant to be in a school building. Then, there is the search for love. My relationship with Ben brought so much to my life, and I do desire to find love again. I believe that Ben would want that for me, too. After sixteen years with Ben, it is very challenging to be vulnerable again. Armed with my Disney soul, I still believe that I can have a happy ending, so, I have to believe that, as with Hercules, I know every mile will be worth my while. I would go most anywhere to find where I belong. I’ll keep you posted…

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