Caregiver

On Mother’s Day: What Disney and I Know About A Mother’s Love

We were always Mickey Mouse fans!

Today is Mother’s Day. My grandmother believed that every day should be Mother’s Day. And, the truth is that when my mom was alive, every day WAS Mother’s Day. We were so close that we did not need an actual holiday to celebrate that fact. After I lost them, I can’t say that this holiday was like other milestones in terms of evoking much sadness. There was a feeling of not belonging, and the sting of realizing that I didn’t have the close and unconditional love of family anymore. Yesterday, I saw a lot of people carrying flowers and celebrating the occasion, albeit a day early. It hurt more than it has because I realized that I have lost all of the people whom I had celebrated throughout my life. I never forget all of the love that I currently have in my life, but there are times that I don’t like to face that the people I loved the most only exist in my memories now.

I think about the importance of mothers in Disney films. Often, they are not present, having died at some point in the childhood of our favorite characters. Who can forget the pain of Bambi’s realization that he has lost his mother? The power of a mom’s life remains steadfast in the lives of our beloved characters. The films show us that people we love and lose stay close in our hearts. This is such an important message for children who are caregivers and are grieving.  I previously shared this clip from Disney’s live action Cinderella, where Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it and they must honor her. This scene touched my heart. I cherish my memories to keep my mom’s spirit alive and honor her. I get my childlike enthusiasm from her and, I believe, my natural caregiving skills, which even extend to my students. Of course, I embody her love of Mickey Mouse and all things Disney, but I hope that in some small way I have followed her example as a person. I do know that she is always with me. But, as I have also said before, as fortunate as I am, sometimes memories aren’t enough. Today kind of feels like one of those days.

My mom and I were very close, or, as everyone said, attached at the hip. My dad always said that he loved to listen to us giggle. She was a child at heart and I get that spirit from her. She loved Mickey Mouse and Paddington Bear and she loved children. Children loved her, too. She was a teacher at our local early childhood school and she loved when kids would greet her around the neighborhood. People laughed that we spoke on the phone many times every single day. We went to the theater and ballet together. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events. We loved each other unconditionally and had so much fun. Frankly, I could not imagine living after she died.

Grandma and I were also very close. From the time I was a child, I was in awe of Grandma and her elegance. I loved her sense of fashion. She had a wonderful way of putting together colors and fabrics and styles. I still have some of her clothing and jewelry. The best shopping I ever did was in her closets and drawers. When I’m feeling lazy about dressing up or putting on make-up- it happens rarely, but it happens!- I hear her warning me that I never know who I am going to meet and I should always look my best. Clearly, she was hoping for a nice, Jewish Prince Charming. My fairytale was not quite exactly her idea of the “tale as old as time,” but Grandma always seemed to understand that I danced to my own beat. Sometimes we frustrated each other, particularly when I challenged her ideas of an ideal life. But, we had a special bond and an unconditional love for each other.

Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.

Grandma had four brothers and a sister, my great-aunts and great-uncles, and I loved them all dearly. I loved spending time with my great-aunts and great-uncles. Losing Grandma and my older relatives left a huge void in my life. However, through our loving relationships, I developed a tremendous appreciation of and compassion for elderly people that I have to this day.

Grandma was very artistic and I inherited her abilities and passion for crafts. She crocheted many aphgans and sweaters, skirts, dresses and ponchos. I remember choosing wool colors with her and how each item had to represent the gift recipient, yet had to be timeless and classic. I can see my own shifting tastes as I look at my childhood aphgan in its pastel colors and then the gray, maroon and cream colors in my college aphgan. I remember waking up in the morning covered with the squares she made while I was asleep.  My dollhouse and dolls even got aphgans! I still have many things that she made. They hold such beautiful memories of time spent watching her and learning how to crochet. Eventually, she helped me to make an aphgan of my own. Ben used it often. Grandma’s talents extended to the piano, and she inspired me to learn how to play. I never played as well as she did, but she helped and encouraged me to play, and I’ve kept some of the sheet music.

When I was a caregiver, juggling responsibilities for Ben and my dad, I realized how hard my mom worked, at a time when there was no real acknowledgment of the role of caregivers. My mom was at her core a natural, nurturing caregiver. She took care of my dad, brother, our dogs and me, as well as Grandma, but was also responsible for looking after my great-grandparents, great-aunts and great-uncles, and even my cousins. She even knew the treats that my friends liked and made sure to have them on hand at all times.  She took care of everyone in myriad ways. My mom was the most selfless person I have ever known.

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

I realize now that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after Grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with Grandma and my dad and helping them tend to various chores. I also loved and kept in close touch with my great-aunts and great-uncles.  I went home every weekend to help in any way I could, and sometimes that was simply keeping everyone company and making them laugh. My grandma did not want to be cheered, and I understood that. I don’t think that anyone fully comprehends the loss of a child unless they experience it. My aunt, my mom’s older sister, also visited every weekend. But, after a sudden death, everyone floundered and tried to pick up pieces while still in shock and feeling profound sadness at the loss of the key person in our family. And, as in any family, the dynamics led to tensions that were, at times, explosive. I found that, just like I believe my mom would have done, I spent my time with them being a cheerleader and my private time at home collapsing in grief. Sometimes I came home, sat on the sofa and cried, and at other times I dropped my bags and took myself to a movie just to escape.

When Grandma was ill, I helped with her caregiving, and, although I was not her primary caregiver, I was the one she usually relied on for comfort. At the same time, although I was in my thirties, she wanted to protect me from the fact that she was dying.

As time has passed, I think mostly of the wonderful memories of my mom and Grandma and our time together. So much who I am and what I do reminds me of them. I get my Peter Pan-like inner child spirit and love of Disney from my mom. You won’t be surprised that one of my favorite memories is when my mom called me from Walt Disney World exclaiming, “Abby, I met Mickey!” Every time I bake I feel Grandma with me, and she is a part of all of my creative and artistic endeavors, as well as my fashion choices.

Making humentashen is a tradition that started a long time ago!

Ben and I had no children together, but he had three daughters, so I suppose I can say I was a stepmom, though I only had a brief relationship with one daughter that I believed was closer than it turned out to be. I would like them to have been there more for their dad, but I knew that interfering would have added more tension to Ben’s already stressful life. I made no demands and have never had any expectations of them.  It’s a shame, because I would have loved to be an active stepmom and would still like that.

Now, I am a devoted mom to my cat, Tinker Bell, as I was to Disney and Tiffany. My mom- well, my whole family- loved our pets, so their influence was present even as I cared for Disney and Tiffany as they coped with several illnesses. Tinker Bell has been with me for almost three months and she has realized that hers is a home full of love. Today, as on most days, she is curled up next to me, napping and then waking up to chat and, I imagine, say “Happy Mother’s Day!”

My mom and our Standard Schnauzer, Dulcie. Miss them both!

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

There is not a day that I don’t think of my mom and Grandma. I am proud to honor them on Mother’s Day, though in truth, I celebrate, treasure and miss them always. I wish a Happy Mother’s Day to mothers of all creatures, great and small, human and otherwise.

On ALS and What The Little Mermaid Learned About Losing Voice and Herself

“The Little Mermaid” © Walt Disney Pictures 1989

May is ALS Awareness month and despite the popularity of the Ice Bucket Challenge, it still is not a well-known or understood disease. It’s a melancholy month for me because I see so many posts about ALS that remind me of the tragedy and cruelty of this disease and how far we have to go to manage and ultimately, to cure and eliminate it. I am always happy to see the strides that have been made and proud to be part of a community of people with ALS and their caregivers, who offer boundless support, commiseration and encouragement. While I tend to reflect on how I felt as a caregiver and in grief, this month brings me back to the actual, day-to-day impact of ALS and how Ben expressed his experiences.

ALS/Lou Gehrig’s disease, is defined as a disease which causes the death of neurons that control voluntary muscles. My friends and family became aware of the physical effects of the disease primarily through Ben’s experience. Ben’s first symptoms were a lack of balance and falling. His legs also became tired very quickly. As the disease progressed, he lost the ability to use his legs at all, and then his arms and hands, then chewing and swallowing became difficult, and his speech became increasingly impaired as he experienced those muscle losses. His cognitive skills were not affected, so he was completely aware of what was happening to his body.  The progression of ALS varies from person to person, so, for example, some people may never lose their ability to walk, others lose their ability to speak first, while Ben lost it last. Eventually, the ability to breathe is lost, and that is often the cause of death from the disease.

This scene from Disney’s The Little Mermaid was poignant to me within the context of ALS. Ariel wanted so much to be a human and to be with Prince Eric that she was willing to relinquish her voice to the sea witch, Ursula. Ariel knew that her voice was integral to who she was, but she was in love, and you know how that goes, especially in a Disney film. Once she gives her voice to Ursula, she quickly realizes that she has lost the ability to express herself, and her ability to sing, which was so important to her. She also did not realize that without her voice, she was no longer recognizable to Prince Eric. Of course, she made a choice. Someone with ALS does not get a choice, and I would venture to guess that they would advise her to keep her precious voice.

ALS,Walt Disney World,Little Mermaid,Ariel

The Magic Kingdom at Walt Disney World- 2001. Pre-ALS days

The loss of easy communication was very frustrating to Ben. First, phone use became difficult because handling the phone was hard and it was difficult to understand him. We then began frequent texting. Ben used a virtual/on-screen keyboard and an app that connected his phone to the computer screen. However, if his hand slid off the mouse, communication was cut off and that led to some very tense moments.

Living with Ben, I was more likely to understand what he said and I could facilitate conversations with others. There were times, however, that I could not understand him. He would shake his head and tell me to “forget it,” which upset both of us. When communication was an obstacle and he was homebound, Ben did notice and lament that he had less contact with people. Friends and relatives with whom he thought he was close stopped reaching out, or, they made promises to visit that they did not keep. At the same time, he did not really want people to see him as he looked. He did not want them to see him looking gaunt and struggling to talk, eat and move. It did leave him feeling isolated and hurt.

When strangers did not understand Ben, they sometimes assumed that he was mentally challenged and spoke to him like a child or addressed only me. Often, Ben laughed about it, but on some occasions he felt invisible and very misunderstood. So, I involved Ben in the discussions to show people that Ben was fully capable of understanding and had lots of opinions and many people did follow my lead. As caregivers and loved ones, I see it as our responsibility to educate people through example, because some people are willing but not quite sure how to engage with people with a variety of disabilities. Unfortunately, not being able to say what he wanted and be truly seen and heard sometimes caused Ben to withdraw. I cannot begin to imagine how Ben felt to be seen for the ALS symptoms rather than for himself.

I cannot begin to imagine how Ben felt to be seen for the ALS symptoms rather than for himself. Click To Tweet

After a respiratory crisis landed Ben in the hospital, he had a Bipap mask before he had the tracheostomy. This was the first time that Ben really had absolutely no voice. He could not call me, or call for help, or just have a conversation. On an emotional note, he could not kiss me or tell me he loved me. When I recently re-watched The Little Mermaid and I saw Ariel panic the first time she tried to speak and remembered that she could no longer do so, I remembered Ben’s panic at the thought that he could not easily get someone’s attention with is voice, but he also could not use a hospital call button. Ben was afraid to be alone in the hospital room and I was afraid when he was alone. The mask obscured his mouth, so reading his lips was also very difficult. We spelled out words by my reciting the alphabet and his nodding when I reached the correct letter. However, the length and tediousness of that process frustrated him, and he began to weigh what he really needed to say. There were many incidents when hospital staff ignored Ben and asked me questions that he could answer. I immediately addressed those questions to him so that he could participate in the discussion. Yes, it took longer, and it was not easy, but he mattered, and staff had to accept that. Most really were wonderful, and they got a glimpse of who Ben really was beneath the ALS. But, just as Ariel felt devastated that Prince Eric did not recognize her, Ben, too, felt that he was becoming unrecognizable, even to himself. It also made him look at how he saw himself moving forward, which was something he had tried to avoid since his diagnosis nearly six years earlier.

Ursula tells Ariel that even without her voice, she has her looks, and to “never underestimate the importance of body language.” Unfortunately, with ALS, Ben could not rely on body language. He certainly did not underestimate its importance. ALS slowly strips away a person’s ability to move their limbs and even make facial expressions. Although Ben’s experience with ALS never progressed to the point where he was completely immobilized, some people are left only with the ability to blink, if that. Without a voice or facial and body expressions, a person would understandably feel isolated and even irrelevant. Although visits from loved ones are appreciated, they are not easy, so, unfortunately, as in Ben’s case, visits become less frequent.

Walt Disney World, 2001

Ben could certainly have related to Ariel’s wish to have legs like a human. As he lost his ability to walk, he often told me that in his dreams he always saw himself walking and running. As Ben lost his abilities to walk and move his arms and hands, he saw himself as weak and self-conscious. He missed going outside and playing handball. He did enjoy using his scooter, but daily life skills were becoming impossible and that carries an emotional toll. He walked until he accepted that his legs could not handle a single step without his sinking to the ground. That took away his freedom to move around the apartment. It chipped away at his dignity to have to be transferred to and from the bed, his chair and the commode, and to have to be fed his meals. He often denied that he needed as much assistance as he did, which was stressful for me as his caregiver, but that was what he needed to tell himself to deny that ALS was progressing.

Ben was also aggravated that he could no longer do things that he loved to do, like play music on his keyboard and fix computers. He could still talk me through what needed to be done with the computer hardware, but it was not the same. He also continued to research and discover adaptive electronic and computer devices, though they rarely worked for long, as new symptoms of ALS constantly appeared that rendered them ineffective. Music always remained an essential part of Ben’s life and our relationship, and although he couldn’t play his instruments, and we could no longer dance, he never stopped listening to music and making little videos with music clips for me to celebrate different occasions. I also brought his iPad to the hospital, so he could always listen to his favorite tunes.

Body language encompasses body image. ALS seriously impacted on Ben’s body image. He said that he did not like to look at himself in mirrors. As eating became more challenging, Ben lost a lot of weight. His feet got terribly swollen and even the widest shoes did not fit, so he wore adjustable slippers. He could no longer shave himself and although he said I did a pretty good job, I did not do as perfect a job as he did. We could make it fun and funny, but the underlying issue- the deterioration of his muscles- was frightening and tragic. At one point, his aide shaved his beard and left only his mustache. He was a bit insulted that it took me a while to notice exactly what was different.  I think that I somewhat tuned out the physical because there were simply so many changes, and they were too sad to dwell upon. Ben, on the other hand, regularly studied the photos from our visits to Walt Disney World and compared his physical changes from visit to visit. In fact, when I showed pictures of those visits to friends, they always commented on how thin Ben had become, shocked by his physical transformation. When I looked at the photos, I saw only the joy on his face. I guess that’s the Pollyanna in me.

Fortunately for Ariel, she was surrounded by people (well, mer-people and some very adorable sea friends) who loved and looked out for her. Sebastian was an astute and compassionate, if high-strung, caregiver. Nutty but devoted Scuttle revealed Ursula’s evil magical trick to get Eric and Ariel’s voice was restored, she was able to keep her legs and marry the Prince. There was the Disney happy ending.

ALS is not a fictional magical trick with a happy ending, rather, it is a cruel disease to which Ben ultimately succumbed. Still, despite the obvious devastation of his struggle and of losing him, I have to look at the end of Ben’s ALS story with some positive thoughts. Ben’s personality shone as he left this world, according to the very wishes that he expressed, even without his voice, embraced by people he loved and requested to be present, and with music that filled his heart. He was heard and he knew that he mattered and was loved, as his hero Buzz Lightyear said, “to infinity and beyond.”

Now, I use my voice to spread awareness and support caregivers and people with ALS. And, in my Disney way, I will keep wishing on stars for a cure that will ensure a genuinely happy ending for those with ALS.

In my Disney way, I will keep wishing on stars for a cure that will ensure a genuinely happy ending for those with ALS. Click To Tweet

Walt Disney World
July 2014

Thumper- A Special Bunny Who Knew About Caregiving and Friendship

Bambi (1942)
Copyright©Walt Disney Productions

Easter seems a perfect time to honor my very favorite bunny, Thumper, from Walt Disney Pictures Bambi.  I’ve always loved Bambi, and when I first started this blog, I wrote about the song Love is a Song that Never Ends and how it resonated with me in caregiving and in grief. My experience as a caregiver led me to see Thumper’s relationship with Bambi in a whole new way.

Thumper was the very adorable and lovable young forest gossip, and he certainly didn’t always say the right thing. He was the one to point out that Bambi was “kinda wobbly, isn’t he?” and “he doesn’t walk very good, does he?” This is not exactly the positive reinforcement someone wants when struggling and self-conscious! And while his mother had to remind him that “if you can’t say something nice, don’t say nothin’ at all,” Thumper was just a child making an observation, albeit tactlessly, but his heart was in the right place. Actually, he was quite devoted to his new friend, the young prince Bambi.

Thumper and his siblings (also incredibly adorable little bunnies) play with Bambi but also watch out for him. They anticipate where he is going to struggle and they gather around to help him so they can play together. Thumper was Bambi’s motivation. I especially love this clip, in which Thumper assesses the situation on the ice and tries to position Bambi’s legs, advising Bambi to “walk both ends at the same time.” It doesn’t go so well and they both end up skidding and falling. It reminded me of the way I had to work with Ben to help him up and figure out the best way to get around. We each had to trust each other and there were times we were nervous and other times it was fun. There were times that I managed to keep him from falling and got him safely onto the bed or a chair. There were also the times that we both ended up on the ground, fortunately unharmed. And, like Thumper, we often found ourselves saying, “Gee whiz, what happened that time?” I always loved this scene in the film, but now I see it in a new light.

Thumper never gave up on Bambi or their friendship in the same way that as caregivers, we never give up on our loved ones. And, Thumper was so happy when Bambi did have an accomplishment like walking steadily. Though Bambi is first learning to navigate the world and Ben was adapting to new ways to do some tasks and dealing with losing the ability to do others, I could relate to Thumper’s positive attitude of problem solving and encouragement.

Also touching was that he never left Bambi behind in pursuit of his own fun. ALS is known to be an isolating disease, particularly because you lose the ability to communicate. Thumper was determined to have Bambi join him with their other forest friends. It is an important lesson for all caregivers, friends, relatives and others to find some way to remain engaged with our loved ones. Visits, cards, texts, emails, photos, videos and a simple presence can all help a person feel remembered and included in life. Ben and my dad always enjoyed hearing that people thought of them. As their caregiver, it lifted own spirits when my friends reached out to them, too.

The film also deals with Bambi’s fear, confusion and sadness when he loses his mom. He did not know what the future and the world held in store. But, time went on and winter turned to spring, and Bambi grew up. He reunited with Thumper and Flower and the rest of his friends and all their families, and none of them ever forgot the friendship they shared. Thumper and Bambi- and a dose of Disney- remind us that love never dies and beautiful memories stay strong and sustain us as we move through life’s good and bad times.

If you haven’t seen the film, or haven’t watched it in a while, treat yourself. It is a beautiful story.

To everyone who celebrates it, Tinker Bell and I wish you a Happy, Peaceful and Healthy Easter!
And, since the holidays coincide, a Happy Passover as well!

On Looking Up, Cheering Up And All Things Up…Or Not

ALS,Caregiver,Caregiving,Disney,Dumbo

I just saw the new Dumbo, which I enjoyed. It’s a different telling of the story, with added dimensions that make it darker and a bit harsher, and once I suspended comparisons to the original animated version, I was able to see a lot of good things. Seeing Dumbo fly continues to be magical, despite the obvious theatrical effects, because we are rooting for this very sweet and sad little elephant. His flying is overcoming a challenge and finding a gift and talent. He doesn’t just fly, he soars! Isn’t that what we all strive to do?

Seeing the film made me think about all of the references to flying and looking up in terms of our viewpoints and moods. Think of the expression “cheer UP.” It’s interesting how we look up to the sky for hope and inspiration. When I was about four years old, my great-grandmother died, and I was told that she went up to heaven. I took that literally, as most kids that age would, and whenever I saw a pink sunset, I thought she was saying hello from heaven. To this day I think of that.

Here’s some UP-lifting inspiration in Disney and Pixar films.

ALS, Caregiving, Caregiver, Disney, Dumbo

After seeing the new Dumbo, I couldn’t help but think of the original Dumbo and its unforgettable quote, “The very things that held you down are going to carry you up and up and up.” I have written about how I lost myself when I was the caregiver simultaneously for my dad and Ben, but that it was also the most loving and meaningful experience I have ever had. (click here for my prior Dumbo post). Through that experience, as I began to reshape my life, I realized that being a caregiver is integral to who I am. It was not a quick revelation, and it took distance from the actual work of caregiving to see it, but I did gain insight. That, in itself, has given me perspective that meaning and significance may reveal themselves in unexpected ways and in due course. It comforts me to know that it’s there and it makes me want to find it. That is pixie dust and Disney magic at its best!

“Think of all the joy you’ll find, when you leave the world behind and bid your cares good-bye. You can fly!”- Peter Pan

ALS,Caregiving,Grief,Walt Disney World

Ben and I with Peter Pan and Wendy
Walt Disney World 2006
Before ALS

This is a bittersweet quote to me. I think about Ben leaving this earth. I believe that he found peace, and hopefully, joy, when he bid farewell to ALS and its physical and emotional tolls. Now, for me, it is a message of rising above the scars of caregiving and loss. Again, those things may have held me down, but they also lifted me up so that I can fly over those obstacles. Being able to fly allows me to look down and get a clear and bigger picture of the trajectory of my life. The sky is endless, as I like to believe are the possibilities.

 “There’s a different point of view awaiting you if you just look up.”– Jack, Mary Poppins Returns

It’s hard to argue with Jack, especially when Jack is played by Lin-Manuel Miranda, who seems to do everything right! I have found that sometimes even a conversation with someone allows me to look at a situation in a different light that is helpful. It may be positive, it may even be negative, but a new change of view can let some light, or wisdom, into your current situation.

Walt Disney World, Mary Poppins, Grief, ALS

Ben and my second visit to Walt Disney World, 2002
Mary Poppins is the first movie I ever saw in a theater. It will always have a most special place in my heart.

 “When you change the view from where you stood the things you view will change for good.” – Mary Poppins, Mary Poppins Returns

Mary Poppins-in her original and reimagined form-inspires me! I do believe this because I have experienced it. It took some time after my caregiving days and the depths of raw grief to reframe my thoughts and memories. Although I wish upon wishes that my loved ones did not have to suffer and need me as a caregiver, I can now look back on my memories, shifting from the challenging times to see that I learned so much and had a unique and treasured opportunity to give and receive love. I am not being naïve or denying the physical and emotional challenges and scars, but broadening my way of looking at them.

ALS, Disney, Aladdin,Genie,Caregiving,Grief

If I’d known when I met Genie that Ben would get ALS, I would have asked him to grant the wish of a cure.

Unbelievable sights
Indescribable feeling
Soaring, tumbling, freewheeling
Through an endless diamond sky”-
from the song A Whole New World, Aladdin

Songwriters: Alan Menken, Tim Rice

Looking up into the sky to me seems like just a way of reminding us to look for the unseen possibilities and unexpected surprises. Yes, I have been, and will be, disappointed in people and events, but I am more keen to remember the delightful surprises- the people who have shown up, the kindness that I have received, the memories that have shared with about Ben from people whom Ben and I both thought had forgotten him. I think about the new friends I have made and the lasting friendships that have been strengthened. Those are all indescribably wonderful feelings.

Nowhere To Go But Up
Songwriters: Scott Wittman / Marc Shaiman

Life’s a balloon
That tumbles or rises
Depending on what is inside
Fill it with hope
And playful surprises
And oh, deary ducks
Then you’re in for a ride

Look inside the balloon
And if you hear a tune
There’s no where to go but up
Choose the secret we know
Before life makes us grow
There’s nowhere to go but up

I love this song, and not just because it was sung by one of my favorite performers, Angela Lansbury! But, it’s a realistic look at life that acknowledges its ebbs and flows. I get my strong inner child from my mom, but I hold onto it to try to find the pixie dust when things are lousy. It made me want to handle the challenges of caregiving and grief with at least some level of grace and helped me to bring smiles to my dad and to Ben. It allowed Ben and me to go to Walt Disney World and shed our cares as we lost ourselves in the magic. And, although I have the moments when I still feel like I’m stuck on the ground, I do aim to look up for the pixie dust and to spot the magic. I may be down, but from down, there’s nowhere to go but up, especially if I hold on tight to the child-like whimsy that I get from my mom.

Let’s Go Fly a Kite’
Songwriters: Richard Sherman / Robert Sherman

Let’s go fly a kite
Up to the highest height!
Let’s go fly a kite and send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let’s go fly a kite!

Mary Poppins, Walt Disney Productions, 1964

I had to pay homage to my very favorite Disney film, and the first I ever saw in a theater, Mary Poppins. Who can forget the images of the family walking down Cherry Tree Lane with the kite and then of everyone flying their kites and looking up, spreading good cheer, even sharing good memories as the bank partner spoke of the passing of his father. And, just like I believe that my loved ones are watching over me, you know that Mary Poppins is taking to the skies to watch over the Banks family. Lest you think I have overlooked the original Mary Poppins, click here for a post on wisdom from Mary Poppins

“When the world turns upside down, the best thing to do is turn right along with it.” – Mary Poppins, Mary Poppins Returns

Looking up can certainly help us to cheer up and to change our moods. But, the truth is, sometimes we can barely get off the ground or out of bed. I firmly believe that I need to let myself feel sad. We need to trust ourselves and not force a smile when we’re not feeling it. There have been times when I have told people I’m fine. There are times I’ve told myself I’m fine because maybe I haven’t even realized that I’m not. Then, the tears really flow. It’s exhausting. Friday would have been Ben’s and my 20th anniversary. There was a sadness to the day that I could not deny or ignore. But, I have also learned not to anticipate how I will feel or what I will do. In fact, it was an up and down kind of day.

There is so much advice in Disney films about looking up when you’re feeling down.  I do think it’s important to remember that in the depths of grief, we don’t always want to look up. Or, we want to, but we are incapable of feeling anything but devastation, anger, confusion or even numbness. I agree with Mary Poppins (no surprise there!) There is a point during Disney Pixar’s Inside Out (clip below) where Joy realizes that life is a composition of many emotions. We cannot eliminate the sadness, or even the anger or anxiety. It is the human experience. For me, it’s a matter of balancing the emotions, looking for good memories and knowing that I can pace my life and be attuned to myself. I can grant myself permission to feel any emotion at any time and know that I am, and will be, okay. Also, that there is help in many forms if I’m not feeling okay.

I want to conclude with Up, a film that, in its title alone, summons optimism! It’s always been important to me to acknowledge my feelings and to validate the feelings of others without stamping my prescription for cheering up, unless specifically solicited. There are ups and downs. These days there are more ups than downs, though there is always insecurity about the future and even a certain fear of being alone. But, as Ellie taught Carl, I remind myself that “Adventure is out there.”

I hope that Ben and my dad are at peace, up, up and away from their illness and worries. I know that they are looking down and watching over me.

ALS,Caregiver,Caregiving,Disney,Dumbo

 

What Mary Poppins Knows About Where Lost Things Go

Walt Disney World, Mary Poppins, Grief, ALS

Ben and my second visit to Walt Disney World, 2002

I recently wrote about a song in the new Mary Poppins Returns (click to read). The DVD was just released and I have watched it more than once! I always look to Disney films to enlighten my experience, whether it was during caregiving, the depths of grief, or now, as I have re-entered life. Mary Poppins has been a favorite character since I was a child and she continues to captivate me. This new film is not a remake, which is probably a good thing, because the original was a spectacular entity unto itself which could never be recreated or duplicated. This new film is a treasure in a different way, with messages that resonated for me about love and loss.

Here are some of the poignant quotes and conversations that touched my heart and reaffirmed my belief that the people I have lost and whom I miss so dearly are here with me.

You can’t lose what you’ve never lost.- Mary Poppins

Annabel, John and Georgie Banks were lamenting the loss of their mom, fearing that the loss of their home would take her farther away. Michael Banks (their dad, and all grown up from the original) also dreaded the possibility of losing their home because his wife, their mother was so present there.

Listening to the children, Mary Poppins is sympathetic, but she points out that, “You can’t lose what you’ve never lost.” Seems odd, since, indeed, they lost their mom. She goes on to sing a beautiful song that I included on the previous post but am reposting here. It includes these lyrics:


The Place Where Lost Things Go
Composer: Marc Shaiman
Lyrics: Scott Wittman
Performed by Emily Blunt (Mary Poppins)

Time to close your eyes
So sleep can come around
For when you dream you’ll find
All that’s lost is found
Maybe on the moon
Or maybe somewhere new
Maybe all you’re missing lives inside of you
So when you need her touch and loving gaze
Gone but not forgotten is the perfect phrase
Smiling from a star that she makes glow
Trust she’s always there
Watching as you grow
Find her in the place where the lost things go.

In a recent post I wrote of a dream I had with Ben. I wish that I remembered my dreams better, but even if I don’t, I’m sure that my loved ones pop into my dreams and send me little messages. I see my parents, my grandma and Ben in so much of who I am, what I do and how I live my life. They are inside of me and have helped to shape me. I’m fortunate to have many good memories, and I have gained the ability to put the bad memories in perspective, as part of what made our entire relationships. In the film, the children are in their first year of grief. And, they are children, and as such, were so dependent on their mom, which made the loss and ability to find perspective, that much more difficult. Mary Poppins did try to comfort them, but her song also shows that she also listened to them and opened the way for discussion, which was something that they did not get from their father. He was not ready. That is a difficult dynamic, though common within a family where each person grieves differently and parents juggle their own grief and parenting. Of course, Mary Poppins helps Michael, too, which is why she is, indeed “practically perfect in every way!”

I do believe that my loved ones are watching me and are always with me. Our relationship is different now, but I suppose that, as Mary Poppins says, they are “gone but not forgotten.” I can still feel and connect with them even though they are now in the place where the lost things go. I hope that they are happy there, but I think it’s okay that I will always miss them here.

Your mother’s not gone. She’s in your smile, and your walk, John, and Annabel’s eyes. She’ll always be with us wherever we go.” – Michael Banks

There is a touching song at the beginning of the film where Michael Banks (yes, all grown up and with his own children) is looking through his deceased wife’s jewelry box and talking to her about missing her advice about ways to take care of the children. He has so many questions about how to talk to his children because she always seemed to know what to say to them and how to care for them. Michael struggles with losing the family’s house because he feels his wife is so present there. As he begins to fall apart in front of his children, they remind him that “nothing is lost, it’s only out of place.” As the children help Michael come to terms with this additional loss, he realizes that his wife remains present in the children and her spirit will not disappear with the house. I love when people tell me that they see my mom and dad in me. Just the other day, a friend said that she saw so much of my aunt Eleanor in me, and I see that, too. To this day, I have a hard time when I see that restaurants and shops that I visited with my mom or Ben have closed. It feels like I have lost the tangible evidence of our memories, taking them further and further away. I sometimes need to remind myself that I carry all of those memories and the relationships within them in my heart, and by sharing them, I pass them along.

“Some people think a great deal too much. Of that I’m certain.”- Mary Poppins

Mary Poppins says this to Michael as he is lamenting how he’s dealt with his children and the grief that they are all feeling, as well as how to solve his issue with his house. I think that we all overthink matters at certain times. Sometimes, as the song lyrics say, we must trust that our loved ones are there. There are moments when we have to listen to and follow our hearts. We can take a clinical or textbook approach to caregiving, grief, or life in general, and we can read all of the self-help books we can find, but we each find our own way to navigate our experiences. Sometimes the answers lie within us. We cannot always think things through and write a neat and clean plan. Life throws us curve balls. If we follow a sad road for a time, I think that’s okay. After all, grief is not a happy time and healing cannot be forced. That said, we should try to be attuned to our emotions and consider support groups and professional help if the feelings are overwhelming or troubling.

The truth, for me, is that having come out the other side of intense grief, I do see and feel all of this and understand how my loved ones were with me. But, in the depths of grief, sometimes I haven’t wanted to hear a “bright side” or a positive spin. Just as the Banks children needed to express that they missed their mom, and to be heard and validated, there have been times when I simply wanted to know that someone was listening to and understanding my sadness for what it is. There have been times when it has been so clear that people do this for their own comfort, whether it is because they are uneasy or impatient around tears or because they believe that “enough” time has passed for grief or because, with all good intentions, they just want me to feel better. Cheering up isn’t always the answer. Healing does happen, but it happens in its own timeframe. I’m proof of that, and also of the fact that there are ebbs and flows in grief and sadness or tears will happen forever. It means we loved and were loved, and that is a good thing.