When I think of Goofy, I can’t help but remember all of the fun times that Ben and I had with him. Of course, he’s always a lot of fun- he’s Goofy! But, after Ben’s ALS diagnosis, we learned that there is a whole lot more to his Disney magic than silliness. Goofy was a big dose of comfort to Ben during our last visit to Walt Disney World.
Meeting our Disney buddies was always fun, especially for me, but after Ben’s ALS diagnosis, seeing them, especially Mickey Mouse, became very emotional. Although Ben traveled around the parks in a scooter and then an electric wheelchair, while he still had strength in his legs, he stood up for photos with Mickey, Minnie, Pluto, Goofy and Buzz Lightyear. As his legs weakened, he still tried to stand for Mickey and Minnie. A couple of times, Mickey even helped me to help Ben out of the chair and he escorted Ben to the photo spot. During our last trip, in 2014, when Ben would not stand at all, I knew he had truly weakened. Living with him, you might think that it would be more obvious to me that he had deteriorated, and of course you would be correct. However, Ben admitting that he could not stand to meet Mickey was symbolic of his surrendering to ALS and that our life was never going to be the same. Ben became overwhelmed and he began to cry. It was a sad and emotional meet and greet. Mickey had hugs for both of us and I asked him for some magic. With a diagnosis like ALS, you just want to believe in that magic.
It was actually Goofy who picked up our emotional pieces. He saw me trying to comfort Ben and he knelt down next to Ben, being his Goofy self, and soon enough, Ben was laughing. He hugged Ben, he danced around, and simply didn’t stop “goofing around” until Ben was back in the magic. Goofy knew just what to do and there was nothing Goofy about that! That’s Disney magic.
Thank you and Happy Birthday, Goofy! You are 91 years young, and a forever friend.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.