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Mother’s Day Through a Disney Lens- She Lives in Me

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We were always Mickey Mouse fans!

Today is Mother’s Day. My grandmother believed that every day should be Mother’s Day. 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 her, and then my grandma, I can’t say that this holiday was like other milestones in terms of evoking debilitating sadness. Still, there is always a feeling of not belonging, the sting of realizing that I didn’t have their close and unconditional love anymore and the knowledge that my celebrations with them will have to live in my memories. I will spend the day at the theater, which is something I enjoyed with my mom, but something that always brings me joy and peace. Living in a house with Grandma, in many ways I grew up with two mothers, and I honor both of them today.

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

I think about the importance of mothers in Disney films. In many of the animated films, mothers are not present, having died at some point in the childhood of our favorite characters. I have been moved by more recent live action Disney films, where adults and children show emotions and vulnerability as they deal with loss and grief. The films show us that it is okay to be sad and help us to see that people we love and lose stay close in our hearts. This touches me deeply, and it is such an important message for children who are grieving. I previously shared this clip from the 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. Cinderella was my first favorite princess and she remains dear to my heart. I especially love that in the live action film from 2012, we meet Cinderella’s mother, who imparts the important advice, “have courage and be kind.” But we see how Cinderella and her father work through their grief and how Cinderella must then cope with the loss of her father. I keenly relate to how she acknowledges the ways in which she her parents with her and honors them in her actions. The way that she chooses her mother’s dress and asks her Fairy Godmother to keep the butterflies because of her mother validate my own gestures. They are also good ideas to share with children who are grieving.

In Mary Poppins Returns, Michael Banks (yes, all grown up and with his own children) must cope with the loss of his wife and help his children. He lets them know that their mother lives in their hearts and memories. He explains, “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.” 

I love when people tell me that they see my mom and dad in me. 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 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.

 Mary Poppins sings a wonderful song, The Place Where Lost Things Go, in which she suggests:

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.

(Composer: Marc Shaiman; Lyrics: Scott Wittman)

As time has passed, I think mostly of the wonderful memories of my mom and Grandma and our time together. I cherish my memories to keep my mom’s and grandma’s spirits alive and honor them. 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!” My mom was the only truly selfless person I have ever known and I hope that in some small way I have followed her example. Every time I bake, I feel Grandma with me, and she is a part of all my creative and artistic endeavors, as well as my fashion choices. I believe natural caregiving skills, which even extend to my students, were instilled by both of them.

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. 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!” This is last year’s Mother’s Day selfie. I am hoping that I can coax her once again to pose with me.

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I do know that my mom and grandma are always with me. There is not a day that I don’t think of my them and I so frequently speak of them that sometimes people are surprised that they have been gone for more than 25 years. I am proud to honor them on Mother’s Day, though in truth, I celebrate, treasure and miss them always.

Happy Mother’s Day to mothers of humans and all creatures, great and small. If you’re missing your mother on this day, I hope that you will take some time to try to feel her presence and the ways that she may live through you.

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“Peter Pan and Wendy” – The Power Of Happy Thoughts and Friendship in Caregiving, Grief and Life

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

I am pleased to say that I found Peter Pan and Wendy, now on Disney+, to be an excellent and thought-provoking live action adaptation of Disney’s beloved animated story. This film tells the story of how the relationship evolved (or disintegrated) between Peter Pan and Captain Hook. I found myself thinking of my caregiving days, relationships, responsibilities and how they have affected my perspectives and who I am today. This film helped me to reflect on what brings us to where we are in our lives. Please note that there are spoilers in this post.

We learn that Peter Pan and Captain Hook- whose name actually is James- were once best childhood friends. However, Peter banished James from Neverland because James said that he missed his mother, a sentiment that was forbidden by Peter. When Hook eventually returns, they are enemies. Peter says that he survived on his own not with faith, trust, and pixie dust, but rather, with the help of his friends. We know this is not true, because these were exactly the ingredients he used to teach Wendy, John and Michael to fly. The lie did achieve Peter’s goal of hurting James, who became embittered and evil because of the anger he harbored against Peter for abandoning him. Hook expresses that the hard part of getting old is seeing that, “Your friend can look you in the eyes and not recognize you.” This quote resonated with me. Caregiving changed me. I know that. It affected some of my relationships. Importantly, I think about the way my relationships with my dad and Ben shifted to one of caree and caregiver. It was hard to reconcile that I was becoming the parent to my dad and it was hard to feel the shift of Ben’s and my relationship. There were times that we lost who we were to each other. There were times that we lost our own identities and did not recognize ourselves. Some friends got to know me better, others drifted away. Friends who were truly there for me saw and understood me at times that I had a difficult time recognizing myself. I did recognize and acknowledge my friends and the love and support they offered. Other people disappointed me with their distance, disinterest or even dismissal. Though I had enough happy thoughts and memories to keep from becoming bitter, I sometimes still fret that some of these relationships became so superficial. I felt that these people did not even try to see me and I also struggled with the fact that I barely recognized these people as the friends they once were.

As in the original story, Peter Pan teaches Wendy, John and Michael to fly by directing them to fill their heads with happy thoughts. Tinker Bell is there to add the pixie dust. Wendy’s mind floods with lovely memories that quickly take her into the air. Memories have been a focal point of my own life, particularly as I have coped with grief. Although the sad memories of illness and loss continue to occupy space I my head, I have found that more and more, my mind seems to gravitate to the more joyful memories. I like to surround myself with photos and other memorabilia that make me smile. I let myself have setbacks but don’t dwell on resentments and negative memories. At times, I write about them to try to sort them out and give them their say. I want to be clear that I have not rewritten my past in a way that has omitted the difficult times and people, especially when I want to honestly address the challenging aspects of caregiving and grief. Still, I tend to conjure the better times. While I never literally left the ground, that perspective has served to lift my spirits and let me rise from depths of grief.

The Peter Pan Statue in Kensington Palace Gardens always brings a feeling of whimsy and magic. During my first visit back to London after losing my dad and Ben, it also brought a sense of hope.

Unfortunately, Hook feels that he has no joy or good memories to propel him in a better direction, now defined only by his hook. On the contrary, Wendy is bolstered by positive, loving childhood memories and she provides the mothering that soothes the Lost Boys. Unlike Hook, Wendy can save herself with her happy thoughts. This is also something that I can relate to. I have said that caregiving was my most difficult, frustrating and devastating experience but also the most loving, meaningful and rewarding experience. The positive and loving memories have carried me forward.

In the original and in this film, Peter Pan says that “To die would be an awfully big adventure.” I find this statement particularly unsettling, particularly in light of caregiving for my dad and Ben. I can attest that neither Daddy nor Ben ever referred to their fates in that manner.  But, Peter is a boy who is not allowing himself to grow up and mature. Wendy, on the other hand, declares that to live would be an awfully big adventure and that “to grow up might be the biggest adventure of all.” There is great appeal in a Neverland kind of existence, free of responsibility and rules. I am someone whose inner child shines brightly. However, I have also pointed out that my whimsical nature does not mean that I am not grounded in reality. Experience has taught me that there is tremendous satisfaction in taking intimidating leaps ahead to cultivate positive actions and loving, deep relationships, even if the growing pains include uncomfortable changes.

Tinker Bell has always been a favorite character of mine, so much so that I named my cat Tinker Bell because she was small and, in my Disney mind, fairy-sized. In this film, Tinker Bell still possesses her feisty, clever, and adorable manner. Though she does not speak, Tinker Bell is expressive, and Wendy takes the time to understand, communicate with and value her. When they part, Tinker Bell does utter a most profound and valuable expression of gratitude to Wendy, saying, “Thank you for hearing me.” To me, that was the heart of the film. Being truly heard and seen for who we are at our core is something that we all want. Feeling validated is something that we need. I saw that in my dad as he grappled with being older, weaker, and more vulnerable. I saw it in Ben as ALS took away his ability to physically care and speak for himself. They wanted to be heard and seen, to know that they mattered. During caregiving and then as I have moved through grief, I, too, wanted to be heard as I worked through how and when to delve into the world of the living and reshape my life. I also recognize this in the caregivers and grievers I support. It is something that we must all practice because it does not always come easily when we see things through our own lenses.

Tinker Bell has a little Tinker Bell costume and doll.

I am still discovering what happens when I head “to the second star to the right and then straight on till morning.” I witnessed and felt the power of thinking positive thoughts, intensively listening and hearing, and being recognized for who we are. I am grateful for those who heard and saw me and who continue to support me. The experiences- as well as my firm belief in faith, trust and pixie dust- brought me to this point in my life and compelled me to want to give back and work in support of caregivers and those in grief.

I encourage anyone reading this to document your own experiences of feeling heard and seen, and of doing the same for others. These will become your happy thoughts. Feel free to share in the comments.

Thinking Of Grandma On Her Birthday- Tough Milestone Date But Good Memories

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Grandma and I around 1990

Today would be my Grandma’s birthday. As I have written, February is a difficult month with so many sad memories, and although this has its sadness, I choose to at least celebrate this lady who was a most important person in my life. I was a mommy’s girl, a daddy’s girl and a grandma’s girl. That has stayed with me. In more recent years, there have been some wonderful grandmas in Disney films. Julie Andrews as a grandma and a Queen in The Princess Diaries was a treat (and great casting, in my opinion), and I am thrilled to know that they are making yet another sequel.

It always makes me happy when Grandma’s birthday falls around the Jewish holiday, Purim, because one of our traditions was to make humentashen, the triangular, fruit-filled cookies made during this holiday. When I was a child, she taught me my Bubbe’s (great-grandma’s) recipe, and we made the cookies every year. And every year, Grandma admonished my mom, who laughed as she struggled to make the triangle shape and never got it quite right. Family traditions! As Grandma got older, I did more of the work and she supervised. After she died, I continued the tradition, and I even taught Ben how to make them. He loved doing it, and got a kick out of knowing that he, a Puerto Rican, was better at making humentashen than my mom!  Every year, he would look up the date of Purim so he could tell me when we had to bake! And, just like Grandma did, we counted how many of each flavor I had. (Counting was a ritual she started as a joke because my dad used to sneak into the kitchen to take the matzah balls she made. ) As Ben’s ALS progressed, he made less and less, but he was always a part of the process, even as the official batter taster.  Grandma never knew Ben, but I believe that she watched over us and that she would have loved him. I kept and used her mixer until it finally broke, and I still use her huge wooden rolling pins. I continue the tradition, thinking of both of them, and expanding my repertoire with new flavors. Last year, the brand of apricot and prune (the traditional flavors she made) she used forever, seemed to be unavailable. It sent me into a tizzy, even going to a local Kosher grocery, but to no avail. I bought several kinds of new jams, jellies and preserves, experimenting to get the perfect flavor and texture, not wanting to disappoint her. I know she is always watching! They did come out well, thank goodness. This year, my humentashen flavors were the traditional apricot and prune, as well as raspberry-apple-cinnamon, fig, and chocolate. I also added some drizzles of chocolate and even some butterscotch on the fig. They have been well received, which lets me feel that I am honoring Grandma.

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

The 2023 selection of humentashen.

In Disney Pixar’s Coco, the title character, Coco, is young Miguel’s great-grandma, who is delighted by her great-grandson, although her memory of him and of everyone, is fading. But, Coco is loved and respected, cared for by the whole family. My family lived with Grandma, too, and we all cared for her as she succumbed to cancer. I was happy to see Disney tackle the issues of respect for the elderly and memory loss in a sensitive, touching way. Although the film unnerved me and had me in tears at various points, Coco was a powerful, and, actually, a positive reminder that Ben, my mom and dad, my grandma and all of the other people I’ve loved so deeply but lost, are always with me in my heart.

Given my own love for my grandmother, the love between Moana and her Gramma Tala in the film Moana also deeply touched my heart.

Grief,Grandmother,Moana,Gramma Tala,Walt Disney Pictures

I grew up in a house with Grandma, in the same house that she raised my mom and her siblings. There were a lot of memories in that house, a lot of dreams, a lot of happiness, but also sadness. I grew up in that house but my mom and Grandma also died in that house. Grandma and I were very attentive to each other, always calling each other and spending many weekends together. When she was ill I helped with her caregiving, and although I was not her primary caregiver, I was the one she relied on for comfort. At the same time, even though I was not a child, she wanted to protect me from the fact that she was dying.

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. In fact, some of the best shopping I ever did was in her closets and drawers. On a couple of occasions, I was stopped by saleswomen at boutiques because they remembered that before I made a purchase, I called my grandmother for her opinion on an outfit that I was considering. They said they’d never met anyone who called her grandmother for fashion advice. If they knew her, they would have, too. She really had great style. To this day, 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. And, I know that she would have loved Ben.

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. If you read my Valentine’s Day post, these are the wonderful people for whom I made cards when I was growing up. I accompanied my mom and Grandma to visit my great-grandmother at the nearby nursing home almost every day when I was quite young. As a child, it was a fun experience for me because, as I realized in retrospect, the people living there were so happy to see and interact with a child. 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 lasting appreciation of and particular compassion for elderly people.

(L-R) Great-uncle Louie, Great-aunt “Tanta” Rosie, Great-Aunt Lillian, Grandma Dora, Great-Uncle Larry. Mid-1980s. I adored them all.

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.

Some of Grandma’s aphgans. Far left was from my bedroom, the middle was for college and far right was another design she made for another room. When I woke up, I would often find little aphgans in my dollhouse! I’ve kept them, too.
The aphgan I made with help from Grandma.

Grandma was also a craftsy child, and I remembering discovering and being fascinated by a beautiful ribbon doll that she made when she was young. My mom had it restored and framed, and it hangs in my apartment, another reminder of the artistic sensibility that I share with Grandma. 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.

My mom, on the other hand, was not artistic. Grandma did my hair, helped me pick my clothes and taught me how to bake. I never saw Mommy approach the piano, though she did take guitar lessons with me for a very short time. But, as I’ve written previously, my mom and I shared a sense of whimsy and we were both children at heart. Grandma did not share that sensibility and it made for some amusing times. One of my funniest memories was watching “The Little Mermaid” with both of them, my mom and I giggling like little girls, and then laughing hard as we looked at Grandma, who was staring at the screen in disbelief that we could lose ourselves in the film. OK, so Grandma did not embrace the Disney magic, but she did have a healthy respect for Mickey and Minnie and was amused and enthusiastic when I called her from Walt Disney World to tell her that I’d gotten a Happy 35th Birthday hug from Mickey!

As Gramma Tala said, there is nowhere I go where Grandma is not with me. So are my mom and dad and Ben. It’s not always enough, and the truth is that sometimes it’s not even close to being enough, but it helps me to know that everywhere I go, and in everything I do, I carry them in my heart and in the person I am. I hope that I make them proud.

Happy Birthday, Grandma. I love you and miss you

Abby

The Not Very Merry Unbirthdays and Other Milestones

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We all had to celebrate every occasion when they were here.

It has been a while since my last blog post. January is difficult because it is the anniversary of the loss of my mother, and January carries the dread of February, which has too many sad dates. I have written about all of them- my dad’s birthday and the day he died, which are only two days apart; Ben’s birthday; the day my grandma died; the day that my cat Disney died; and my aunt Eleanor died on Valentine’s Day. February is a month that I go through motions, knowing that I am going to hurt. The hurt of grief has become less agonizing. The dread of the dates with the hurt attached, however, is exhausting. I find myself wondering if I am doing grief right, if I am where I should be, and, if I am not, where should I be? Although I have felt like I have written it all, I felt compelled to explore my journey to date. I was hopeful that I would find some pixie dust, and I think I see the sparkle, even if it feels faint at times.

As always, Disney is the way that I sort through my feelings. One of the most profound quotes that has guided and comforted me is from The Fox and the Hound. I cry each time I watch the heartbreaking scene when Widow Tweed has to let Tod go and she tells him, “Goodbye may seem forever, farewell is like the end, but in my heart is a memory and there you’ll always be.”  I have so many wonderful memories and I take every opportunity to surround myself with them. During January and February, when I spend so much time remembering my favorite people, the memories make my heart ache. I feel more alone.

I was somewhat distracted on my dad’s anniversary dates and on Valentine’s Day, because my club did a Valentine candygram fundraiser for victims of the devastating earthquakes that hit Turkey Syria. A lot had to be done and the students were so excited to help others. Ellie was a teacher, so I know that she would have appreciated this. My dad did so much to help my students over the years, not only helping me to buy supplies, but also helping me to support some students to participate in school activities. My students and I joked that he worked harder than they did to learn Spanish because I was a Spanish teacher, and he watched Spanish language television stations, calling me with all kinds of questions. They knew when he was ill because I would sometimes let them know when I would be absent due to a surgery. And they cared. During parent conferences, I received genuine inquiries about his health. While I did not like to reveal much about my personal life, I do believe that my students learned life lessons about caregiving, compassion, and juggling a lot of responsibilities. I firmly believe Daddy was watching over us and smiling. We raised just over $200 that the club members chose to split between Doctors Without Borders and the International Rescue Committee. I am proud of the kids. I am only a little embarrassed to admit that I am proud of myself for plowing through those emotional days.

On Ben’s birthday, I watched Monsters Inc. as is my tradition, because Ben loved it so much. I found myself bawling when Sully looks at the picture Boo drew of them, where he had attached the one wood chip he saved from her door. Mike reconstructed the door, and with the piece Sully had, Sully could once again visit Boo. I don’t have a chip. I can’t see Ben, or my dad, or mom, or grandma. I hold onto the memories, and I am so grateful for them, but a month of un-merry events puts the spotlight on their absence.

Don’t we all wish we had that chip to reunite us, if only for a moment?

This year, because it is a school break, I decided to take myself to Philadelphia to see the new Disney 100 exhibition at the Franklin Institute. In 2008, for his birthday, I took Ben to Philadelphia, to that same museum, to see a Star Wars exhibition. I was not sure how I would feel about returning at the same time and to the same place. But, I am at a point where I plod through and acknowledge that I might be fine, and I might not, and I will just go with how I feel. As I got dressed the morning I was leaving, I decided to wear a necklace that was my mom’s. Since she was a Disney fan, I thought this would bring a little bit of her with me. As I put it on, I was overcome with a deep sadness of the reality that all too often, I search for ways to bring my loved ones with me. I know that they are always in my heart, and I do sometimes feel their presence. Maybe I was thrown because the locket was an actual object and not the abstract thought of her being with me. It sent me into a tizzy, making sure that I was wearing something from each of them. I felt alone and frustrated. Still, I got myself together and got on that Amtrak train and headed to Philadelphia.

I was overwhelmed at the very start of the exhibition. There was an actually pretty bad hologram of Walt Disney welcoming everyone, but there were two quotes that have been very important to me, and to see them at the start simply made me cry. The first is, “We keep moving forward, opening up new doors and doing new things, because we’re curious … and curiosity keeps leading us down new paths.” This is a quote that expresses how I ultimately have explained my emerging from the depths of grief. The second is, “The way to get started is to quit talking and begin doing.” I say this to myself as I work on my writing and efforts on behalf of kids who are caregivers, as well as strategize where I want my life to go. I suppose it is what led me to even go to the exhibition at a time that I thought might be challenging. I did quickly immerse myself in the exhibit, which has marvelous artifacts. I knew that Ben would be front and center of my thoughts because he would have loved to be there. I missed him because our love for Disney was a signature thread throughout our relationship. As always, I looked at things through his eyes. I made sure to take photos of the things that he would have enjoyed. I lingered at the artifacts that would have fascinated Ben. I talked to him in my head, which simultaneously helped me feel more and less alone. I did ask someone to take my photo with a Mickey statue. It’s always awkward, but people are very nice. I could not help but wonder with sadness if I should just resign myself to being alone.

I took photos at all angles because I knew Ben would have been fascinated by this model of his hero, Buzz.

It could be that February will always be a melancholy month filled with the frustration that all those beloved people are gone. Still, I must find the pixie dust. In Up, Ellie left a final message for Carl that said, “Thanks for the adventure. Now go and have a new one.” Despite my insecurities, indecisiveness, and aloneness, I do things like plan the trip to Philadelphia. I wanted to have a little getaway and to have some time to work on my writing in a different venue. In fact, that was a positive experience, and I am already thinking about my next little self-care and creativity getaway. It is a reminder that, as Joy and Sadness learn in Inside Out, sometimes joy arises from or coincides with anguish in unexpected ways. At least I know I have a huge cheering section of grim, grinning ghosts.

At Disney 100, wearing my mom’s locket and my favorite Mickey Mouse brooch, given to me by my friend Ed. But, I’m making new memories as I find new adventures, too.

Looking Back and Ahead to a New Year Through a Disney Lens

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In Mary Poppins Returns, Mary Poppins said, “When you change the view from where you stood the things you view will change for good.” I believe that the past year helped me to shift my view in positive ways. I put into practice Mary Poppins’ good counsel that, “When the world turns upside down, the best thing to do is turn right along with it.” She, along with other Disney friends, helped me to find perspective, insight and positivity that I want to take with me into 2023.

As I think back to the approach of 2022, Remy from Ratatouille stands out for his very true statement that, “The only thing predictable about life is its unpredictability.” I would not have thought that last year at this time, I would spend New Year’s Eve knowing that I had upcoming surgery for breast cancer, to be followed by radiation. It was not something that I shared with many people, and I am still proud of myself for this decision and for honoring my respect for my own privacy. This year, I am relieved and thrilled that my experience with cancer is only a memory. I am so fortunate. Though I would have preferred not to have had to deal with illness, I learned that I can turn upside down with my world, and I could choose to view the experience as in a positive way, in that it helped me to find, or acknowledge, my inner strength.

Throughout my cancer treatment, I conjured a bit of Megara from Hercules. “I’m a damsel, I’m in distress, I can handle this. Have a nice day.” I never thought of myself in this way, generally perceiving myself as pretty weak, despite the bravery I was repeatedly told that I displayed during my days as a caregiver for Ben and Daddy. Also, I am not a good patient, to put it mildly, and I am terrified of even the anticipation of discomfort. Thankfully, I healed well, I attended daily radiation treatments for a month, during which time I soothed my heart and soul with daily visits to Central Park, where I fed my little buddy squirrels, was counseled and protected by cardinals, developed a good understanding with some blue jays, and watched the seasons change. On some days, I even treated myself to a Broadway matinee. Yes, Christopher Robin, I was braver than I believed and stronger than I seemed. Maybe I was smarter than I thought because I found ways to calm and energize myself, surrounded myself with a small group of people who were my champions, and gathered and worked so well with an incredible medical team. Medical leave was stressful, particularly financially, but I tried very hard to shift my view and to recognize and embrace that it was also a rare opportunity for self-care and reflection.

One of my favorite pictures.

The truth was that I did not miss being at school. I missed some of the students and I missed my club. But, I did not miss the job or the environment. It took a while to realize that this was not a bad realization.  Instead of dwelling on not wanting to teach and wanting to retire (I can’t deny that I do spend a lot of time fantasizing about this!), I was presented with a chance to think about the things that really matter to me, things that I want to do, where I have come from, where I was, and where I would dare to go. I had trouble focusing because I was caught up in my medical treatment and healing, but I realize now that I was, in many ways, setting myself up to follow different paths. Walt Disney said, “All our dreams can come true, if we have the courage to pursue them.” The upside of my health problem was getting this time to think through my dreams and how to summon the courage to pursue them. I want 2023 to be a year where I find more courage and confidence.

I have continued working on my caregiving memoir/workbook, which is now on its fourth draft and looking good. I have also taken several classes on writing for children, which is something I have wanted to do for longer than I can remember. I am playing with a few ideas and have dedicated time on a weekly basis to work on my writing. Even when I am not writing, my head is spinning with ideas, and this feeds my soul and inspires me. Whether or not my work ever gets published, I am thriving as I push myself and my creativity to grow. Although timid, I think of Quasimodo and know that each time I put pen to paper, or keystroke to keypad, “Today is a good day to try.” I aim to make 2023 a year of good days to try!

Working on behalf of caregiving kids has also been at the forefront of my goals. This year, for the first time, my club held a couple of school-wide activities to honor November’s National Caregiving Month. We invited everyone to contribute words of support and encouragement on a huge banner for our students and staff who are caregivers. The positive response and feeling of pride among caregivers AND those who were writing the kind words was truly heartwarming. We also held journaling workshops that were so popular that we will continue them throughout the school year. As I have put myself forward and concentrated on my desire to work with children, I found an opportunity with Hope Loves Company to be a leader of an online support group for children who have or had a parent or family member with ALS. I have volunteered with Hope Loves Company in the past, and I am delighted about this new role. I am also strategizing ways to expand on my ideas in a way that extends beyond my teaching days. I get nervous about the possibilities and tend to put obstacles in my own way. I know that a lot of this is confidence, and some of it is my nature as a worrier. Still, I have seen that shifting my view and putting myself out there and reaching towards the future with my goals in mind has had positive results. I must continue to summon Merlin from The Sword and the Stone, who said, “It’s up to you how far you’ll go. If you don’t try, you’ll never know.” It is my wish and my intention to keep trying and keep moving farther in 2023.

I love Edna Mode, but I think that I will always disagree with her comment that, “I never look back, darling. It distracts from the now.” Looking back to my caregiving days helps me to offer compassionate care to my students who are caregivers and has driven me to incorporate this into my teaching and my future plans. Even as I look ahead, I remain attached to my memories and the rituals I have established to honor them. I have added to my Christmas trees with ornaments from my travels and that conjure good memories and I continue to place Ben’s favorites where he always liked and could see them easily on the tree. That feels right to me. I have written about the photo calendars I reproduce each year that contain Ben’s and my favorite photos from Walt Disney World (click here for more on that). Each year, I re-ordered the calendar, which has been a source of comfort despite leading me to wonder if it kept me too grounded in the past. I did not change the calendar from year to year because it has been something that I rely on as it is. However, this year, when I returned to the web site to place my order, I learned that the company has folded. There was that unpredictability that Remy spoke of and it sent me into a complete panic. It felt like another loss. I researched other online sites and was devastated as I tried to recreate my calendar. I realized that I was not going to be able to make an actual replica. This led me to wonder if I should, in fact, try to make a new kind of calendar with other pictures. Ultimately, I could not let go of my Ben calendar. I am not ready, but I still think that’s okay.  I spent hours revisiting our photographs and the original calendar and I created a new version. In true Mary Poppins form, I decided to view this activity as a good opportunity to take the time to really look back and spend time with the memories and then, to choose photos that still strongly stand out among my memories. They made me smile. I learned that my calendar is an important ritual, but that I can also adapt, adjust and even change some of the things I do, while still maintaining my connections to the past. Sorry Edna, but looking back helps me step into the now and look ahead. Still, with the knowledge that I carry the memories and the people in my heart always, in 2023 I intend to be more present in the now, maybe even opening myself up for new romance.

July 2023 calendar. Slightly different arrangement but same photos and memories. I guess that’s a good analogy for grief- the memories may shift somewhat but they are still there and strong.
February 2023 calendar page. Different page but still pictures filled with love and a trajectory of ALS, too.

Ben and I never had big New Year’s Eve celebration. I did enjoy finding a new recipe and cooking a lovely dinner for us. All that changed with ALS anyway, once Ben could not chew. Tonight, Tinker Bell and I will have a peaceful evening. Mommy home and next to her is all Tinker Bell wants on any given day. I will be thinking about the past year and the things that I want to bring with me into the new year. Ben would tell me that you “can’t spell KickASS without KASS.” I’m also thinking of his hero Buzz, who would tell me that I can go “To infinity and beyond.”  I am a bit more cautious, and, always a believer in fairies and fairytales, recall Cinderella and her Fairy Godmother, who reminds me that, “Even miracles take a little time.” I can wait. I do hope 2023 is filled with some sparkles and pixie dust.

The 2022 tree- some old and new ornaments, but Ben’s favorites still remain in the place he liked them.

I hope that everyone has the new year they wish for, or, at least the peace and ability to find a positive view and to gracefully turn upside down with the world when necessary.

Our 2022 Holiday card. Tinker Bell does not exactly share my enthusiasm for taking this annual photo, but she managed to humor me.
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