Who wouldn’t be happy with a big hug from Mickey!?!?! July 2014
Today is National Hugging Day. Seems there is a National Day for everything. I posted this photo on Facebook in honor of the occasion. It’s one of my very favorites. The story is interesting and, I think, worth sharing.
Ben and I were always so happy to meet Mickey and Minnie. As his ALS progressed, he still tried to walk to see Mickey. I knew that it was getting bad when he stopped trying to walk and just rode his electric wheelchair up to Mickey. After all, I was always the one who got super excited to see my friends and he generally laughed at me. In this photo, we had just entered the room and were greeted by Mickey. This was during the brief window of time that Mickey spoke (electronics, it wasn’t good). I was so shocked to hear him and couldn’t stop laughing.
What you cannot tell by looking at the pure happiness on my face is that this picture was taken on our last visit to Walt Disney World in July 2014. It was a truly wonderful visit, but stressful because Ben needed much more assistance (we brought a paid caregiver with us) and because we knew in our hearts that it would be our last visit. You can read more about that visit by clicking here. The Magic Kingdom is very accessible, but making sure that Ben had what he needed, that there were accessible bathrooms nearby and that Ben would be able to fully enjoy himself did come with stress. Getting to meet Mickey without any issue and with Ben feeling truly delighted gave me a feeling of success and relief. What you also don’t see in this picture is that I whispered in Mickey’s ear that we really needed some magic. Mickey just had to look at Ben in his electric wheelchair- unable to speak very clearly, very thin but with super swollen feet- to know there was a medical issue. Mickey held me tight and he patted my hand. He and Minnie gave Ben a lot of attention. It was emotional and it was beautiful. I needed that hug. I needed to believe that Mickey could help.
I believe the Disney magic did help. No, it didn’t cure Ben’s ALS, but, being at Walt Disney World brought Ben such happiness, it allowed him to feel free, and, as Ben described, he forgot his problems, which is saying quite a lot. We had four years after his diagnosis during which we were fortunate to enjoy several visits to Walt Disney World. I do call that pixie dust. So was the hug.
I feel it’s an important story to tell because we never know what’s going on in someone’s head or their story. I love that this photo captured a very vibrant smile before the tears that came with the emotion. That photo reminds me that a hug from Mickey Mouse came with all of the dreams, wishes and comfort that is Disney magic. That hug was compassion. We all need to show and to feel that. Mickey didn’t have to say anything, didn’t have to offer any advice or judgment- his hug was the compassion that we needed.
Hugs were so important to us. Since the characters don’t speak, hugs were a way that they communicated. When Goofy saw Ben get emotional, he didn’t know what to do so he kept hugging Ben and then trying to make him laugh, which he did. Hugs are powerful.
This is another favorite picture of mine- Ben loved Sully, and when Sully saw Ben in the electric wheelchair, he ran over to him and offered to help him up. Sully gave Ben the biggest hug, which made Ben so happy. You can just see his inner child shining in this photo. It absolutely delights me to have these memories.
I always hugged Ben, particularly when there were no words for what he was feeling, but one of the things that upset him as his ALS progressed was that he could no longer give hugs. Ben gave great hugs! He was a big, burly guy and would just envelope me. I still remember him saying that he felt terrible that he could not hug me when I struggled with my Dad being ill and I learned that my dad died. He couldn’t hug me after I returned from the funeral.
I think that COVID 19 has shown us that we cannot be dismissive of gestures like hugs. I miss them. Tinker Bell gets lots of them, though she would tell you that she doesn’t love hugs at all.
I send everyone a big virtual hug of compassion on this National Hugging Day! Let’s hope that next year is different.
Today, January 13, 2021, marks 29 years since my mom, Sandra, or Sandy, left this earth. This is never a great day. To the people who say that I should not be so affected after 29 years, I say that we all handle things differently. There is not a day that I don’t think of her. I talk about her often, and so much so that some people do not realize she’s gone, or for how long she’s been gone. I don’t know if that is good, or “healthy,” but she is so much a part of me. This is an especially difficult time for me because she died at the age of 59, the age that I am now. And, coinciding with turning this age, which is something I have feared since my mom died, I have had to face some challenges. I didn’t talk about them to many people because one thing I’ve learned through caregiving and grief is that people are very good at giving unsolicited advice and sharing unsolicited thoughts that only make me more anxious. I can do that to myself. At least I can say that I have finally learned to try to protect myself.
Dates are important to me. I choose to take these anniversary dates to remember my loved ones. Grief after all these years is different than grief for my dad and Ben. Those losses are still closer to the surface, and the sadness hovers very closely, with setbacks unexpectedly triggered. Because my mom died suddenly, it was an indescribable pain to have her ripped from my life. We were extraordinarily close. Sadly, I’ve lost the people to whom I was the closest. On the anniversaries of these losses, I do think about all of them and the good and bad memories, but I don’t anticipate how I will feel, I don’t punish myself, and I don’t feel obligated to act any particular way. I will say that, this year, as every year, on this day, I woke up with the vivid memory of how my dad called me and said he thought my mom had died and the ambulance was on the way. His follow-up call confirmed it.
I can’t help but lament the time that we lost and that my mom never met Ben. But, I never lose sight of how lucky I was to have my mom. She was a truly selfless, beautiful and very adorable person and mom. I love that many of my childhood friends have good memories of her, too. In this clip from the live action Cinderella, 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.
In my mom’s memory, I’d like to share some details about her and some of the important ways in which she influenced me, even in my caregiving days. This is a reprint of the post I published previously on this day:
My mom died of a sudden, massive heart attack at the age of 59. She was way too young. The day before she died we were playing outside with our Standard Schnauzer, Dulcie. There are no hospital memories, or memories of seeing her ill. I’m grateful that my last memories of her are of her laughing. However, there was no opportunity to say goodbye. She was just gone.
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 when we were out shopping. 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 had so much fun. Frankly, I could not imagine living after she died. I loved her and she loved me, unconditionally.
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 my grandma, who lived with us, 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 that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after my grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with my 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. For a change of pace, I often brought home treats from Zabars or other NYC places. 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. 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.
As time has passed, I think mostly of the wonderful memories of my mom and our time together. So much who I am and what I do reminds me of her. I get my Peter Pan-like inner child spirit from her. You won’t be surprised that Disney played an important part in our relationship, too. One of my favorite memories is when she called me from Walt Disney World exclaiming, “Abby, I met Mickey!” Another is watching and giggling through The Little Mermaid, especially because my grandma was straight-faced and completely baffled by our amusement.
I proudly say like mother, like daughter!
I am not ashamed to say that I still miss my mom terribly. It remains a wound that is easy to open. When watching movies, I often cry at the mere mention of mother daughter love or the passing of a mother, and Ben intuitively handed me tissues in these instances before he even saw tears. Of course, that made me laugh through my tears, and that was a good thing. Ben never knew my mom, but he knew how important she was to me and it touched my heart that he always marked in his calendar her birthday and this anniversary and he would plan something Disney-related, like our date to “Beauty and the Beast” (click here for that post).
I enjoyed the movie Brave and feistiness of Merida as she searched to find herself. Fortunately, I never had big issues with my mom. But the scene in this excerpt made me cry because it says it all. Even after 26 years, I just want her back. I have struggled, I have adjusted, and I have had to accept her death. Now, I take comfort in knowing that she’s always been with me and always will live in my heart. On this day and always, I love you, Mommy.
Walt Disney Pictures, Pixar Animation Studios 2020
Another holiday season, another Disney Pixar release. Of course, given the pandemic, this is not just another holiday season and the film release was launched in our homes through Disney+. Bizarre as everything is these days, for me, the timing of this film and its meaning were perfect and significant.
The past few months have taken an emotional toll on me for various reasons. I did not write my annual birthday post, Thanksgiving post or Christmas/Chanukah post. I just didn’t have it in me. Isolated in my tiny NYC apartment, I have all too often found myself wondering about the future, where I want to be, and if I am now where I should be, or where I thought I would be in my life. With plenty of time for reflection, at least I can say that I have gained some new perspective. Soul helped me and offered an opportunity to clarify some of my thoughts.
In Soul, I met Joe Garner, who, in some ways, felt like a sort of literal soulmate. He is a music teacher in a middle school but it’s not where he sees himself (having taught middle school, I can’t help but relate to that and feel his pain!) Joe is surrounded by people he loves and who love him but whom he feels do not support his goals. Joe’s dreams and daily realities are in conflict. He sees his goal and purpose as being a musician in a club, playing with famous jazz musicians. He doesn’t see the impact he makes on students and the spark that he feels when they are inspired by music.
After an unfortunate accident, Joe is facing the possibility of death. In this kind of limbo, Joe becomes a mentor to 22, a spirit who has defiantly resisted becoming human. Essentially, 22 questions if she is good enough to take a leap of faith, go to Earth and really live. Once immersed in Joe’s life as their spirits intertwine, she experiences the beauty – memories, people, places- in Joe’s life. She feels a range of emotions that she’s never let herself feel. She responds to the passion that Joe feels when he plays music. She wants that passion but does not quite have her spark. Of course, some people go their whole lives without a spark, but 22 actually feels how invigorating and fulfilling it is to have one. She is scared but she wants to live. On the other hand, Joe is looking so far beyond his life that he can’t feel and enjoy the spark or see how in many ways he is living his purpose.
I can relate strongly to Joe’s frustration as a teacher. I’ve written a great deal about how caregiving is essential to who I am. When I was in that role, I did not always embrace it, though I did feel a great joy when I made my dad and Ben feel happy, safe and loved. I have sought that fulfillment since I lost them. I don’t often feel a spark in the day to day work of being in the classroom. I feel confined there, and always feel that there’s something more out there for me in the field of caregiving. I feel that I am meant to work with caregivers, particularly children. In my free time, I write, create and dig into other pursuits related to caregiving, with the hope that things will come together and I will move beyond the classroom. I criticize myself for what I am not doing, and for tiptoeing around my goals in the same way I tiptoed around life as I grieved. It took me a long time to realize that what I love about teaching is connecting with students in a way that helps them to feel happy, safe and inspired. When I noticed that there were many students who were also caregivers- whether for ill family members or to help raise their siblings- I felt so strongly that I should be somehow supporting them.
Last winter, not long before the pandemic hit, with my principal’s encouragement, I began a club with the premise of helping caregivers care for themselves, and I also invited all students who felt stressed and wanted to take some time to care for themselves. I let guidance counselors know about the club and encouraged them to talk about the club to any students whom they felt would benefit. Another aspect of the club was to care for others through volunteer work, within the school and the local community. I had a small group of dedicated and creative students but there were no caregivers. I lamented that I was not serving the original audience of caregiving kids. Not being terribly confident, I felt disappointed in myself for not making happen what I had envisioned.
My club was comprised of a small core of young women who enjoyed our remote meetings, particularly when the schools closed and they felt isolated. I was happy to oblige when they asked to continue our virtual club meetings throughout the summer. We conducted some virtual workshops for our school community and were able to do a remote volunteer project for a community organization. I am pleased that the club has provided a platform to nurture this lovely group’s creativity and talents as they design and deliver virtual workshops. It gives me great joy to work with these clever and compassionate young people and I am thrilled to see their confidence and public speaking skills grow, as well as their understanding of ways to care for and work with various populations.
Compassion and caring have shown themselves to be what many young people in the school want and need in their lives. This fall, more than 200 students signed up for our remote club. They are eager to reach out to and support other students. Club members were bursting with ideas of what we can do to care for the school and outside community, even with the challenges of being remote. They’ve expressed that they love the positive vibe of our club meetings. Before the holiday break, club members suggested doing “secret greetings” so that students would get to know each other and would receive holiday greetings. It touched my heart to hear all the thoughtful and inspired ideas. To carry out this idea, one of the students led a brief tutorial on a card-making program and the students had fun making digital cards and knowing that they were doing something kind for another student. The students are embracing the club as a way to learn to take care of themselves and others.
I have weekly meetings with my original core group of students to plan for our club meetings. This is not an obligation, but it is something that they want to do, something that they feel committed to and good about. They are proud of themselves and that gives me a tremendous sense of satisfaction and joy. In the course of our virtual meetings, I have been happy to listen to the kids discussing their plans for the club and also to hear them support and cheer on each other through their school and life issues. I have realized that this a group of young people who are caring. They want to show caring and compassion to others. This feeling is spreading throughout our school in a different way than I envisioned but also an incredibly meaningful way.
There is a scene in Soul when Joe, who is actually 22 in Joe’s body, has a chat with Dez, a barber he’s known forever. The barber revealed that he had wanted to be a veterinarian, but his daughter became ill and life circumstances occurred, and he followed the path that led him to be a barber. Joe seemed shocked that Dez was doing something that didn’t make him happy. Dez disagrees, pointing out the ways in which he is happy, saying, “I may not be giving blood transfusions, but I’m definitely saving lives.” Perspective is so important. Joe needed it. I’ve needed it.
Sometimes life doesn’t unfold as we expect or envision. Of course, I’m not only referring to illness and loss. Things happen, and what we plan may have to shift, but we can also discover unexpected and joyful surprises that are still aligned with what we feel we are meant to do. Joe’s experience as a teacher prompted me to examine my own experience. Sometimes we have to look deeply at what is right in front of us. Within my teaching experience and now, with the expansion into my club, I am, in fact, modeling compassion and caregiving qualities that can support any student who is a caregiver and increase awareness among many students of the need to care for ourselves and others. I see that the club will help young people to develop and appreciate a sensitivity and sensibility that will inform their awareness of and abilities as caregivers. That’s a beautiful thing and it is the foundation of what I believe my purpose to be. It was hard to see the accomplishment when I blocked the view with frustration and a limited perspective.
I do tend to get caught up in worrying where I should be, what is going to happen to me and if I am enough to get myself to my goals. I put myself down about what I think I should have achieved and if I am good enough. I am still very connected to the past and I can get lost in wondering and dreaming but not necessarily stepping forward and living those ideas. I still find myself talking aloud to my dad and Ben and even asking for signs of their approval. Ben died at a young age, as did my mom- in their fifties- cheated of so much life, and that leaves me keenly aware of how important it is to value and take advantage of life, even when I feel guilty for having more time in this world. However, like 22, I am sometimes afraid to take a leap of faith and have the confidence to pursue some of my dreams. It is also hard for me to acknowledge my success when it occurs. I am not sure what I am going to do with the rest of my life, but, with the New Year upon us, I think it’s a good time to commit to really living every minute and having a perspective that allows me to keep striving and growing, but also to see and appreciate what I have achieved and how I am meeting my purpose, even if I still believe that ultimately, my purpose lies beyond the classroom. The crucial thing that tugged at my heartstrings as I watched Soul is that like Joe, I do not want to look back at my life and think that it was meaningless.
I love that music is integral to Soul because Ben’s spark was also music. He often said that music saved his life when he was a teenager. When Joe explains jazz in the film by saying, “the tune is the excuse to bring out the you,” I thought about how that statement would resonate so clearly with Ben. I will forever be moved by musical references that conjure such a deep association to Ben. His profound love of music led me to frame some of the sheet music he wrote for his arrangements. I feel very connected to him when music and/or lyrics make a strong emotional statement to me. Though it will not be apparent to children, the film’s use of jazz to convey the expression of who we are will be felt deeply by adults and music lovers. For me, the ability to capture in different ways the minds and imaginations of children of all ages is pure Disney magic!
Soul is an important and, indeed, a soulful film with the powerful message that can never be overstated- we should appreciate life and take advantage of every moment.
I wish everyone a New Year filled with good health, happiness and a sense of fulfillment!