Today is National Hugging Day. Seems there is a National Day for everything. This is one of my very favorite photos from Walt Disney World. 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 is the thirtieth anniversary of the day I lost my mom. Thirty years. That is a substantial amount of time, and although the overwhelming feelings of devastation have dimmed, this big milestone has come with a sharp pain. Each year, I have written on this day as a tribute to my mom (Click here to see a prior post with my memories). I have posted though laughter and tears the same beautiful memories and relived the same moments. Today, I wonder what my mom would think if she was now here with me, thirty years later. I wonder what she thinks as she watches over me, because I know to the depths of my soul that she does. Am I the person she would want me to be? Am I where we both think I am meant to be?
I have not been able to get my thoughts together enough to write a blog post in more than a month. The holidays came and went with the same struggles. Maybe with this big milestone date on my mind, I was thinking about the passage of time and feeling a bit lost. It did not feel right to me to simply revisit the moments and to feel that time stood still, or even went backwards. Instead, I deeply needed to identify ways in which I have shifted from profound grief and missing people to invoking in new ways and inspirations the wonderful spirits of those I have loved and lost. It almost scared me to examine my life in that context, in case I felt that there was not much growth. Unable to find the words, I just let the thoughts scamper through my head. I can say that in my experience grief has shifted, and the pangs have grown weaker. Sure, the unexpected waves of sadness and aloneness still set me back. Perhaps confronting a big health issue and waiting to begin my treatment plan infused the season with a bit of melancholy. However, I did celebrate (and have yet to dismantle) my beautifully decorated apartment and glorious new lavender Christmas tree. Once again, I placed Ben’s ornaments and his little Disney tree in the places that made him happy. These began as unnerving activities and have become comforting rituals. I am not as conflicted about placing on the tree new ornaments that represent new, non-Ben memories. I feel like they represent my growing ability to hold dear the old memories but also to savor new experiences, places and people. I still purchase ornaments that Ben would love and that I know will make me smile as I think of him. I think that is okay because I do it from a place of love and not out of a sense of obligation or attempt to step back into and relive the past. I have conversations with Ben, often out loud, about these things. Maybe it is odd, but it helps me. It is also growth over time.
Once again, I ordered the same photo calendar of Ben’s and my favorite moments at Walt Disney World. In the past, I wondered if it was good to keep getting the same calendar with those pictures of us. Again, I thought about the context of time and that it has been more than six years. I still assess the things that I do and the way that I deal with my grief, but this calendar is yet another comforting ritual. I did, however, make an important change. Now, next to my calendar, I placed a new photo collage filled with more recent photos with friends, human and otherwise. It never ceases to make me smile to see all those photographs. It fills me with gratitude and with inspiration to know that I have always been surrounded with love.
I am not sure exactly what I expected on this significant milestone of my mom’s passing, but just as I did not want to write the same kind of holiday posts, I knew that I did not want to repost the same tribute to my mom this year. I wanted to look at my life now and to see if I could find my mom in where I am now, not just in the beautiful memories. At the same time, it scared me to try to reflect on that, in case I saw nothing new, no positive revelations, no growth. I am told that I am too hard on myself, but I cannot help but wonder about the time I have spent over these thirty years. I do know in my heart that my mom remains such a tremendous part of my life. Thirty years later, I believe that I am fortunate and stronger by being able to recount so much love and laughter. I have certainly been through a lot, particularly with Ben and my dad, but am I where I am meant to be?
I talk about my mom very often, even to my students. When we watch Coco and discuss Day of the Dead, I say that although I do not specifically celebrate the holiday, I love the idea that my loved ones are watching me and visit with me, and that I believe that they do. I have had students come to me to discuss their own losses. Keeping my mom in my heart and being open and vulnerable is a tribute to my mom and to our relationship. It also helps others, and helping others defined my mom. Over these thirty years, I have learned that it defines me, too. I am still not exactly sure how, but I do believe that it is part of my destiny.
This thirty-year milestone seems particularly significant as I have been trying to overcome a lack of confidence to pursue dreams. I am working on a book and exploring ideas for books for children. I am also doing a lot of self-reflection related to this blog and caregiving and what will be fulfilling and meaningful next steps. My mom had so much confidence in me. I must harness that and turn it inward. My club has been one of the greatest achievements. Over the holiday season, I had a proud and loving experience with my club that invoked the spirit of my mom, our bond and our whimsical natures. I took a small group of students from my school club of caring kids to see the Rockefeller Center tree and surrounding store windows and lights. This was something that my mom and I did every year, along with shopping the after-Christmas sales. Over the years of teaching, I learned that so many students who lived right here in the city had never seen the holiday displays. I always wanted to arrange a group to do this and this year I took that opportunity. For some of the students, it was the first time witnessing these absolutely magical sights. Being kids, they were almost as excited about the Lindt chocolate shop on Fifth Avenue as they were about the decorations. Being my mom’s daughter and remembering how she knew every friend’s favorite treats and usually had them at the ready, I treated the kids to chocolate. We all reveled in and videotaped the light show at Saks Fifth Avenue and the kids had fun taking pictures of the sights and each other. It was a truly delightful experience and I love to see their friendships blossom. By creating this club event, I shared a special memory of my mom while creating a new memory that is testament to our relationship. I suspect this will be an annual club tradition and I am thrilled at that thought. I must add here that this event was also emotionally moving for me because I know how happy it would have made my dad. Daddy took such an interest in my students. He often helped me to buy supplies and he chipped in when I helped my students. I often joked with my students that he was trying harder than they were because he watched Spanish language television shows so he could learn Spanish because I was a Spanish teacher! My dad knew that life was difficult for many of the kids and he saw my worry about them because I did bring it home with me. He would have appreciated that I created this joyful opportunity for them that also honored my mom. In fact, it also honored him and his kindness and generosity.
Just before the holiday break, the club participated in our school’s Winter Fair, in which students and clubs sell items that they have made. The club wanted to participate and to raise money not for themselves, but for a local charity. I shared as an idea a successful project that I had done with a group of children at my local ALS chapter. Colorful beads, alphabet beads and beads with inspirational and positive words were strung by the children to make bracelets. It was very touching that some children chose to make a bracelet for their parent with ALS. The club members loved the idea and tweaked it for our event. They created little kits comprised of these kinds of beads and elastic and cord to make either a bracelet or a phone charm. I provided the supplies and they came together after school for a few weeks to make the kits. Some students worked on our social media. Other students created printed display items and inserts for the kits. They coordinated their schedules to ensure that our table was “staffed” throughout the event, and they worked together beautifully. As it turned out, our kits were so popular that we had to improvise to create new items right at the table, inviting students to custom design their own kits! It was heartwarming to see students looking at all the words and responding with smiles to the sweet words that resonated, whether for themselves or for a person to whom they were giving a kit as a gift. The students were so proud to raise one hundred dollars, and they voted to donate the money to Covenant House, a wonderful organization that helps children and families. After the Winter Fair, it was lovely to see many students walking around wearing their bracelets, some commenting on the positive words they chose. Spreading good thoughts and caring for others are beautiful notions I learned from my mom. While my club may be the outgrowth of my experience as a caregiver, my mom instilled in me a caregiving soul. Thirty years and I have discovered new ways that I help Mommy’s spirit live on.
Mommy was the caregiver for our entire extended family, and she was selfless. By observing my mom, I learned how to be a caregiver for my dad and for Ben, but even for many students. I also watched it take an emotional toll on her, though I do not think that I processed all of that until I had my own experiences in caregiving and grief. Although my mom set no boundaries, I like to think that the boundaries I set over the past thirty years with some family gave voice and action to her feelings. On the other hand, my mom was of a generation where family was all that mattered, no matter what. I know that and though it does sometimes leave me a bit uncomfortable, I will never be as selfless as my mom. I hope that when she watches over me, she is content that I have found a loving chosen family of friends that has rallied for me in good and bad times. I am definitely a better advocate for others, but I have learned, particularly in more recent years, to advocate for myself, too. I guess that in this way, my mom’s experience informed my own need for self-preservation.
I know that Mommy would be very upset that I am facing health issues. I also know that, in response, I would be trying to comfort her and convince her that all is well, maybe not even being entirely open about my health. I learned that from her. She always had a smile on her face and was better at doing things for others than for herself. I also learned that from her. She was a care giver at her core and I have in so many ways followed her example. Although it does at times betray my emotions, I am grateful to have inherited my mom’s joyful demeanor.
Merida from Brave said, There are those who say fate is something beyond our command. That destiny is not our own, but I know better. Our fate lives within us, you only have to be brave enough to see it. I was very daunted by this date and even by the thought of writing this post. I am sometimes my own biggest obstacle as I pursue my dreams. I did not think that had achieved much in this period and was ready to reprimand myself. Actually, as I have written this post, I have found it encouraging to see that over time, I emerged from such deep grief over my mom’s sudden and shocking passing to embrace and share her spirit. In fact, it has helped me to better understand her role in my destiny. I think that I will always assess my actions and my growth, probably too harshly. Maybe I am too old to feel this way, but I still want my mom to be proud of me. Hopefully, the sense of whimsy and belief in Disney magic that I shared with my mom will help me to be brave enough be the person my mom believed I could be, to follow my dreams and to keep discovering and creating new opportunities to grow and to honor the people who gave me so much during their lifetimes.
Thirty years. I still miss and love you every day, Mommy. And, I thank you.