ALS

What I Learned About Caregiving From Mary Poppins

Yesterday, October 1, marked the 86th birthday of Julie Andrews. As always, it is an opportunity to devote a post to my beloved Julie and the role that introduced me to her and remains my favorite Disney film: Mary Poppin. The consummate nanny, Mary Poppins taught me many things about caregiving. Mary Poppins was the first movie I saw in a theater and clearly left a lasting impression!

A kind yet stern and always magical nanny, Mary Poppins added whimsy to life while addressing all of its practicalities and mishaps. She got Jane and Michael Banks to use their imaginations and see beyond the confines of their nursery.  They were safe in her care, learned the importance of rules but also how to challenge them, and, because she knew just how to step in, they built and strengthened relationship with their father. She knew how to meet the needs of the Banks family better than they did. Now that’s what I call a great caregiver!

Here are ten lessons about caregiving that I learned from Mary Poppins:

  1. “In every job that must be done there is an element of fun.”
Mary Poppins 3

There were days where there was nothing fun in the actual tasks required in Ben’s care due to ALS. But, those silly moments that made us laugh amidst the sadness are the ones that still stand out.

  1. “Worrying won’t help anyone.”
Mary Poppins 4

Even as a worrier, I know it’s true. It doesn’t help. But, if it helps you to picture worse case scenarios and create plans if necessary, go for it. Just don’t dwell! Trust Mary Poppins. It doesn’t help.

  1. “Just a spoonful of sugar helps the medicine go down, in the most delightful way!” 

Lyrics to live by! I was there for a reason, and that reason was love and compassion. There’s the sugar. It made the awful, embarrassing tasks “swallowable.”

Click to play:

  1. “Never judge things by their appearance…even carpetbags. I’m sure I never do.”
Mary Poppins 7

Because a person needs a caregiver does not mean they become irrelevant. When people would come to see Ben and talk to me as if he wasn’t there, I would redirect them to include him in the conversation, even if I had to explain what he was saying as his speech became more impaired. His brain was still very active. He mattered. I did not let anyone make assumptions about his capabilities or ideas. Always let the person know they matter. Because they do.

The same goes for people who judged our relationship. Whatever people thought of me, or of Ben, and our caregiving situation, we were the only two who were actually in our relationship for sixteen years. In any caregiving situation, particularly within a family, there are dynamics that only those involved can really understand. You can have opinions, but tread gingerly when it comes to offering advice, even if it is requested.

  1. Sometimes a little thing can be quite important.
Mary Poppins 1

A smile, a thank you, a kiss, remembering something special. I’ve written about how Ben and my relationship felt like it shifted from husband and wife to patient and caregiver. It was in little things like holding hands, sharing memories, or “inside jokes” that we were brought back to who we really were as a couple before ALS.

  1. Best foot forward. Spit spot.
Mary Poppins 6

It’s all you can do. And, when you’re dealing with a lot of crises, you can’t take a lot of time to ponder. As I’ve said in prior posts, I often had to “just keep swimming,” even though I belly-flopped, but I always put my best foot (or fin?) forward!

  1. Let’s go fly a kite

All at once you’re lighter than air
You can dance on the breeze
Over houses and trees
With your fist holding tight
To the string of your kite

Mary Poppins 5

OK, we couldn’t really do that. But, we had to maintain a sense of fantasy and whimsy that could take us outside of our reality, at least for a few moments. The trips we took to Walt Disney World were always magical, and they took on a special meaning after his diagnosis. Those trips were the kite that took us briefly away from reality. Now, I can look back on those memories with gratitude and a bittersweet delight.

  1. It’s a jolly ‘oliday with Mary

Oh, it’s a jolly ‘oliday with Mary
Mary makes your ‘eart so light!
When the day is gray and ordinary
Mary makes the sun shine bright!
Mary Poppins 2

Ben teased me that I loved to use the word “whimsical.” But, I enjoyed bringing whimsy into his homebound life. I often arrived home with shopping bags of “treats”- new tshirts for his collection, a gadget that I thought might help him, a new ingredient for our culinary adventures into pureed concoctions. It always made him smile and laugh. That made the “sun shine bright” for both of us!

  1. Supercalifragilisticexpialidocius

It’s a great word. Covers a lot of territory. It especially made me chuckle to myself when a bevy of not such nice words were going through my head!  Try it.

Click to play:

  1. “Mary Poppins. Practically perfect in every way.”
Mary Poppins 8

I tried, and often beat myself up too much for feeling that I was not a good enough caregiver. It’s a great goal, and always important to remember that we all define “perfect” differently, and that the definition may vary by circumstance. I hope that, at least at times, I was Ben’s Mary Poppins.

Walt Disney World 2002- My second trip to Walt Disney World with Ben. The pre-ALS days.

All film photos: Mary Poppins (1964), Walt Disney Productions.

What Ratatouille’s Remy Understood About Food

In online forums, I have seen many comments and questions about ALS and eating issues, ranging from chewing, swallowing and calories to getting and navigating feeding tubes. Eating is an experience that we take for granted until ALS happens. More than taste, food conjures memories and draws all kinds of connections for us. Ben and I used to enjoy a Saturday night when I would choose a recipe, then we shopped together, and I cooked with a little help and a lot of enthusiasm from Ben. On special holidays, like New Year’s Eve, we did not like to party, and for us it was fun to choose a new and fancy recipe and just have a cozy evening. With ALS, Ben could no longer eat his favorite foods. Even treats like jellybeans were no longer an option. While that may not seem like a big deal, our love of jellybeans went back to the very beginning of our romance. I don’t think I realized the significance of food for us until we were not able to enjoy that romantic and fun aspect of our relationship.

In the Disney film Ratatouille, Remy says, “If you are what you eat, then I only want to eat the good stuff.” Unfortunately, as chewing and swallowing became more difficult and daunting, Ben did not want to eat and he was losing a lot of weight. Like many people with ALS, Ben’s life started to include a lot of Ensure Plus because he needed extra calories. Like Remy, I began to improvise and combine different foods to make as much “good stuff” as possible. Ben got a daily milkshake with calorie dense ice cream, peanut butter, and assorted other fruit and treats. Much as I love sweets, I never had one of those milkshakes, have never had a milkshake since and probably never will.

The ghost of famed chef Gusteau advises that “cooking is not for the faint of heart. You must be imaginative, strong-hearted, you must be willing to try things that may not work.”  Indeed, I did use my creativity, and, in retrospect, it was a way to be craftsy, which I missed in my life. Also, it was a way to bring something vaguely resembling the fun evenings we had when I cooked. I replaced our regular blender with an impressive Vitamix. Ben loved chicken, gravy and mashed potatoes all mixed into a bisque-like consistency. He enjoyed chicken with teriyaki sauce and mashed potatoes. I even perfected a carbonara-like sauce for him. I experimented with different broths to help with textures and flavors. Ben had a great sense of humor about it laughed at my eccentric presentations, but he did miss chewing, and the reality was that eating did become a scary. There was always the fear of choking. Additionally, when he could no longer hold utensils or a cup, he had to be fed his meals. This was yet another constant reminder of his lack of independence and ability.

Even when he had a home health aide who loved to cook, Ben preferred that I did his cooking. When I left food for her to just heat and grind in the Vitamix, Ben was always upset that she didn’t grind it enough. He said she insisted it was chopped as much as possible. Of course, that wasn’t true, since I was easily able to achieve more of a puree. I have seen caregivers who do not take seriously the requests from their carees. In many cases, as with Ben, those requests are legitimate. Frankly, as I saw it, even if a request was simply a desire by Ben to exercise some control, it is understandable in the context of the little control he had over his life.

When unknowingly critiquing the rat Remy’s meal, Anton Ego, the food critic, reflected, In the grand scheme of things, the average piece of junk is probably more meaningful than our criticism designating it so.” Eating that meal transported Anton Ego to his childhood memories.  Many people do associate foods with their families, their cultures, their travels and life experiences. McDonald’s might not have qualified as “good stuff”, but for me, it was the fun of going there after a day at the beach with my family and my dad singing and making us laugh in the car. My favorite restaurant in New York City, Joe Allen, is beloved because I often went there with my mom, aunt Ellie and grandma before the theater. Baking is a way that I feel very connected to my grandma, since she taught me the recipes that were originally her mother’s. I might not be a fabulous cook, but Ben appreciated how much I loved cooking for him, and it was a joyful and loving part of our relationship to shop and spend the evenings together. I never really cooked until I met Ben, so he rightfully claimed credit for my acquired skills. With ALS, food took on a different meaning. It was about Ben’s nutrition, maintaining weight and staying safe. Even at our happy place, Walt Disney World, Ben was always terribly self-conscious and nervous that he would have a choking incident. Fortunately, we only had one small incident and it was brief and unnoticed by others. Ultimately, food represented more loss.

I think that Remy’s most profound statement is, “the only thing predictable about life is its unpredictability.” No one could have predicted that Ben would have to battle ALS. We could never predict the many ways that our lives would have to change and their emotional toll. After Ben got his feeding tube and tracheostomy, one of the things Ben said he truly missed was food. In fact, one of the very kind nurses put a little bit of soda on a mouth swab so he could at least savor the flavor. After I lost Ben, I did not expect that a mundane chore like grocery shopping alone would be a painful experience. It was stressful to walk through Trader Joe’s and see the ice cream I bought for Ben’s milkshakes, and the gravy that I bought in huge quantities so that I always had it on hand for purees. I did not cook for at least a year, until a friend of mine had surgery and expressed a desire for a home-cooked meal. As I prepared what was one of Ben’s favorite meals, I was overwhelmed by the fragrances that Ben always loved. It has become easier as I am more able to focus on the good memories and I am more accustomed to doing things alone.

Now, when I enjoy a meal, I find myself hoping Ben is somewhere savoring all his favorite foods!

Your Acts Of Kindness Are Pixie Dust For Caregivers!

Walt Disney said, “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.”  The act and art of caregiving showcased this lesson. It is difficult to be a caregiver and also difficult to need a caregiver. For me, caregiving was challenging and heart-wrenching, but also the most meaningful, rewarding and loving work I ever did.

The bottom line is that caregiving can be daunting, overwhelming and isolating. Needing help is difficult for many caregivers. It seems a contradiction to ask for the care when you are the giver of it. As hard as it is to ask for help, for many people it is also hard to know how to offer support. I do believe that many people genuinely want to help. This is frequently expressed in statements such as, “let me know if I can do anything.” It is not that this is not sincere. Unfortunately, it is not always helpful. For one thing, asking a caregiver to reach out adds yet another burden. It also requires a caregiver to determine if a person is truly willing to help, and to what degree.

There are apps and web sites that enable the coordination of tasks. These are great to pursue. However, they also require effort to organize, particularly for those people uncomfortable with technology. As caregivers, we know what we would appreciate for ourselves and our carees but we seem reluctant to share these wonderful and often simple ideas with the people are able and willing to tackle the tasks. Maybe it is discomfort with asking for help, and it could also be a feeling of being overwhelmed and just wishing that people knew what to do without your telling them, because you already direct so much activity!

What I have done here is compile a list of suggestions, or wishes, shared by caregivers, including my own. Please share this post, or print out the information here and email, text or hand it to anyone who asks you to “let them know” what they can do. Share it with people you know who are caregivers or who know caregivers. Let them choose from the list. Highlight the things that really appeal to you and are appropriate to your situation. Clearly, some of the suggestions are contingent upon the circumstances of the caree and the extent of relationships. Modify or add to the list it as you see fit!

The most important thing that family, friends, neighbors, coworkers and others can do is to be present and not to make empty promises. It is better to show up than to stay away because of fear. We may be the caregivers, but others can, and often want to demonstrate the “care” in care-giving!

The majority of these suggestions did come from caregivers of people with ALS (pALS) but, they are easily adaptable to many situations.

Household tasks:

**Please note: Some of these can be done on a regular basis. Also, be specific about what you can do. For example, let me know that you can do my dishes every Wednesday evening.

  • Do errands like going to the grocery store or pharmacy. You can even text from a store to see what I need.
  • Stop by with groceries or a meal.
  • Bring lunch to my caree when I’m not home.
  • Help with a household project, such as home maintenance, gardening or cutting the grass
  • Walk the dog and give him/her some play and run time.
  • Take or pick up my child(ren) from school/library/club/playdate.
  • Do the laundry.
  • Sweep the floor.
  • Do the dishes.
  • Provide transportation to/from doctors and clinic appointments.
  • Organize bills and paperwork.
  • Perform or help with the night-time routine and putting to bed.
  • Bring my trash bins back from the curb.
  • Bring mail from a curbside mailbox.
  • Volunteer to make phone calls to help coordinate care.

Respite:

  • Visit with my caree, even if for a short time, so that I can shower, take a nap or just relax. Tell stories, share memories, laugh!
  • Stay with my caree while I go for a walk, run an errand or do anything that will give me some peace.
  • Feed my caree a meal to give me time to catch up on things, or just relax.
  • Take my caree for a ride, to the movies, shopping. We need a break from each other!
  • Make a meal, for my caree and/or for me. Just show up with it! You are invited to join us.
  • Bring coffee or tea or any snack and join me for a break.
  • Come for a chat. Even if my caree can no longer chat, he/she listens and will feel  engaged, needed and valued.
  • Flowers brighten our day. Laughter does, too!
  • Spend time with my children- read and play games with them or take them out to the library or playground.
  • Spend the day with my caree so I can clean, do long overdue projects, etc.
  • Read aloud or play an audio book and stay to listen.
  • Spend time with me, even if the conversations and times get interrupted with my caregiving responsibilities. You can even be a second set of hands if I get overwhelmed.
  • Bring lunch, sit and enjoy the meal with me.
  • Share your joys and stay connected through texts, emails and calls, even though I cannot always respond.
  • If you go to a restaurant, bring something back for me.
  • Stay over, so that I can have a brief getaway.

If you can:

  • Pay for housekeeping services, for one time or even on a regular basis
  • Spa services are a wonderful gift- manicures, pedicures, facials, or a whole spa day!
  • Contribute money to hire caregivers for various periods of time
  • Gift cards help us with a variety of items.
  • New sheets and a comforter.
  • Help us to start our Amazon wish list so that anyone interested can provide items that we need.
  • Research and assist with securing equipment and grants for home.modifications.
  • Be an advocate for caregivers and on behalf of any disease.

Walt Disney also said, “There is great comfort and inspiration in the feeling of close human relationships and its bearing on our mutual fortunes.” I am grateful to the group of caregivers that I have had the pleasure to get to know and who have offered support and contributed wonderful and thoughtful ideas that you see in this post. Share this list with people who say that they want to help. Ask them to share it, too, so that others who are or know caregivers get ideas for how to help. I found that kindness often came in most unexpected ways and times. Despite the circumstances that none of us wished for, I hope that this is a bit of pixie dust.

International Cat Day- Celebrating The Pixie Dust Our Pets Bring To Our Lives

Tiffany and Figaro

Today is International Cat Day. Sometimes, it’s hard to take all of these celebratory days seriously. Sometimes they are just fun. But, today, a day to celebrate my cats, is deeply felt time to honor my girls, Tiffany and Disney, whom I miss so much, and Tinker Bell, who, like the fairy for whom she’s named, has brought some real pixie dust into my life. August is always an emotional month of ebbs and flows because it marks Ben’s time in the hospital and the day that he succumbed to ALS and left this world. Now, it also marks another year of COVID19 and uneasiness about the upcoming school year. I have spent much more time at home during the coronavirus pandemic, and I am even more grateful for the company of Tinker Bell and reflective on the significance of pets in my life. I also think about how important it was to have my pets during caregiving days and grief.

Disney characters often have pets, and those characters are often the most reliable friends, filled with unconditional love and an ability to bring comfort, joy and laughter. Mickey Mouse has Pluto, Gepetto has Figaro and Cleo, Cinderella has Bruno and the mice, Prince Eric has Max, Jasmine has Rajah, Lilo has Stitch, the Darlings welcomed Lady, and Moana has Pua, and these are just some of the pets. Sure, they are cute to watch, and they add levity, but as I’ve gone through caregiving experiences and grief, I see them as more than just adorable sidekicks. As a pet lover, I recognize the power of their devotion and friendship. The pets, and even the forest friends of Snow White and Princess Aurora (Sleeping Beauty), are the ones with whom they share their hopes, dreams and worries. Pets help take away the loneliness and sadness. I think they’ve always won my heart because they conjure the lighthearted and sweet way that my own pets have helped me to delve into my emotions and feel hope and love. They also allowed me to fulfill my love of taking care of others, human and otherwise.

From the time I was a child, and our dogs became ill, we doted on them and cared for them. We grieved them when they left. When I was sad, I could always count on my pets to bring comfort. When they became ill, we were their caregivers and brought comfort to them. I suppose I learned a lot about caregiving watching my parents tend to our dogs as they aged and became ill, feeding them with syringes and carrying them up and down and in and out. Our lives revolved around them. We would have had it no other way.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

My dogs and cats also cared for me. After I lost my mom, our dog, Dulcie, was the one I turned to when I needed comfort from the tension and grief that pervaded my house and family. She then kept me company during my grandma’s battle with cancer. It was beautiful to see Dulcie stay by grandma’s side, bringing her comfort and peace. Dulcie may not have been able to communicate with words, but she clearly sensed that grandma was leaving this world and she shared our grief. When words eluded me, I could just sit with Dulcie and feel her devotion. When I simply needed distraction, she was always up for a game with her toys.

There’s a perception that cats are aloof, but my cats have always been very sensitive and attuned to me. They’ve known when I needed them and they know that I will be there for them. Tiffany may not have liked to be held, but she had her own way of showing affection, though definitely on her terms. She brought so much fun and comfort to my life, especially because she was the first pet who was only mine and my first cat. Also, Tiffany chose me. I was her human from the moment she entered my workplace, so there was no question she would go home with me when I got new job. When Tiffany had cancer and needed surgery, I did whatever needed to be done, and my dad helped me because he considered her family, too. It was an honor to be her mommy and her caregiver.

Tiffany loved our Disney toys!

When I lost Tiffany, Ben and I welcomed Disney, my cuddliest and sweetest girl. Poor Disney had the responsibility of being there for me when I was caring for my dad and Ben. Disney witnessed and experienced Ben’s ALS battle along with me. When Ben became homebound, she kept him company. She accommodated his loss of mobility, making it easier for him to reach and pet her and staying close by so he could see that she was watching over him. It was easy to see her concern as he had more difficulty navigating the space. Unlike many cats who are territorial, Disney seemed to know that there was a reason for all of the changes in our apartment. Furniture was moved, things were stacked, her favorite corners were no longer available, but Disney handled it so graciously. She was there for me when I needed her, too. She sensed if I was crying or frustrated and was always at my side at those moments.

 Disney was “Miss February” in the Bideawee calendar in 2011!

When Ben was in the hospice unit at Mount Sinai Medical Center, I was allowed to bring Disney to visit him. She was on thyroid meds and suffering from arthritis, so at first, she was not comfortable on the bed with him. She sat on a chair and watched him intently. When he asked me to bring her closer so he could stroke her, I put her on my lap and she pulled herself up on the bed, curling up on his chest. He asked me to put his hand on her, she turned on her side, and they both closed their eyes. I truly believe that they said their goodbyes in this moment.

Disney watched Ben throughout their visit in the hospice, even when he slept, as pictured here.

In truth, it was definitely an added responsibility to have a pet while being a caregiver. When I was with Ben in the hospital and did not want to leave his side, on top of everything that had to be handled with Ben, I had to make arrangements for a friend to feed Disney. There were a couple of times that I had to leave the hospital a bit early or arrive a bit later than usual in order to pick up her medications. But, these were things that Ben and I wove into our days and expectations. She was family and I was also caring for her. Those responsibilities were actually joyful.

Visiting hours for Disney during one of her hospital stays.

Disney did not know that she was the comfort that Ben and I needed after we lost Tiffany. She also became the comfort I needed after the loss of Ben. The apartment was so lonely and there was no more structure to my day without my hours spent at the hospital. I don’t know what I would have done without Disney’s sweet face and presence. Unfortunately, my caregiving structure was quickly restored when, just a couple of weeks after Ben died, I learned that Disney had diabetes and I had to inject her with insulin twice a day. Just as I had to do as Ben battled ALS, I had to put aside my squeamish nature. Once again, I was a caregiver, this time for Disney. We had several emergency visits to the vet, including one in the middle of the night, when I genuinely thought I would lose her. Terrifying as it was, it was this incident that showed me that I truly am a caregiver at heart. (You can read a little more about my experiences with Disney by clicking here) It is my strength and my fulfillment despite the challenges and sadness. Administering fluids was the next phase of Disney’s illness and although it took me a while to learn how to do it without pricking her, she handled it so well. I promised Disney and myself that I would never keep her here if she was not having a good quality of life. Eventually, I was by her side as I let her go. It was particularly difficult to let go of Disney because she was my closest connection to Ben. She may not have been able to articulate her feelings, but she saw, felt and responded to his ALS struggle and its effects on our family.

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

I knew that I could not be alone for long. Within a couple of weeks, I welcomed a new little love. Tiffany and Disney were more than eight years old when I met them, but this little girl was only two. She was half the size of them, which, in my way of thinking, was fairy-sized, so I named her Tinker Bell. I see Tiffany and Disney in her, but she still has a lot of kitten in her, so she makes me laugh with her antics. Ironically, Tiffany and Tinker Bell love all of my Disney plush toys, while Disney, despite her name, was less interested in them. She is a bit skittish around other people so they don’t see her gentle sweetness. Tinker Bell’s greatest joy is knowing that I am staying home with her, so the sheltering in place was a dream come true for her. I’m glad she doesn’t understand the news. Still, I can talk to her about my worries and enjoy having her companionship. I know she thinks she’s training me well, but I love making her happy.

This summer, I have finally followed through on my desire to write a book for caregivers. It has been a healing process. I hope that it will become a helpful and even inspiring resource for caregivers. However, looking through many photos and videos has led to some tears. Tinker Bell has come to sleep right up against my leg as I type. Sometimes, I tell her how much I miss Ben. Always, I tell her that I am so grateful to have her as my little girl. She understands.

Tinker Bell loves her new little Sully, which I brought her to remind her of Ben.

Having a pet is a big responsibility, which can be difficult when it is added to caregiving responsibilities. There are some logistics that can be downright challenging. While pets may not be able to tackle specific tasks in caregiving, any pet lover knows that they provide an incomparable service. It is a great joy and privilege to have a bond with a pet, and the care and love that we provide for each other is limitless. On International Cat Day and always, I celebrate Tinker Bell, Disney and Tiffany. #InternationalCatDay

On Disney’s “Gotcha Day,” February 18, 2019 at NYC’s Meow Parlour

What Luca Shows Us About Love and Acceptance

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. 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. Click To Tweet

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.