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.
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!
Disney’s Animal Kingdom- 2001, pre-ALS. Ben was psyched to meet Baloo!
Today marks the 53rd anniversary of Disney’s The Jungle Book. I love this classic tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by Shere Khan, the tiger who hates man and is determined to kill Mowgli. I even enjoyed the live action remake. I am moved by the sweet tale of Mowgli’s relationship with Bagheera, the wise panther who teaches and watches over him, and Baloo, the big goofy bear who is a great and caring friend. I always smile when I watch this film, because Ben loved Baloo and fancied himself a big,cuddly bear- a description with which I must agree! There is much discussion about racism in what we consider our treasure trove of classics, including many Disney films. I do believe that it is important to acknowledge and address these issues. Caregiving knows no boundaries. When I watch the film, I cannot help but reflect upon how much The Jungle Book has to say about a caregiving relationship and how Ben and I confronted ALS.
Bagheera has all the qualities of a good caregiver: patience, the ability to listen and reason, understanding of Mowgli as a man-cub within the jungle environment, willingness to let Mowgli test himself, reliability, intelligence, common sense and loyalty. Who could ask for more in a caregiver? Baloo is a great buddy, and he and Mowgli have a deep friendship and love, but Baloo also needs the guidance of Bagheera. When Baloo resists the reality that Mowgli needs to return to the “man village” and be around people like himself, Bagheera needs to remind Baloo that although he loves his little buddy and thinks of him as a son, he has to see the big picture in caring for Mowgli and that he has to think about what was best for Mowgli and not just for himself. Those are tough choices and I remember them well. Caring for Ben meant never losing sight of what our priorities were. Like Baloo, there were many times when I felt Ben deserved to indulge in any of his whims because I did not know how long he would have that luxury. And, we knew that time was not on his side. Taking him to Walt Disney World for one last visit was a very joyful indulgence. There were also the gut wrenching realities. I remember that after Ben repeatedly said that he wanted to go home from the hospital, I just wanted to honor his wishes and I asked his doctor if it would be possible to bring him home. His doctor, who proved to be my Bagheera, provided the wisdom and the reasoning, and then I had to have those heartbreaking conversations with Ben. There were stressful times when, just like Baloo and Mowgli, we argued and sulked. But, the caring in caregiving never went away and neither did the love.
I suppose that ALS was our Shere Khan. The wolves who raised Mowgli from the time Bagheera found him knew that they could not stand up to Shere Khan. They did not stop loving Mowgli, but they knew that he could not continue to live with them or Shere Khan likely would have killed all of them. Caregiving also comes with these difficult decisions. Sometimes it’s a matter of caregiving becoming so difficult that it poses physical and emotional risks to a caregiver. In Ben’s case, had he not chosen to go to the hospital’s hospice unit and separate from the vent, he would have had to go to a facility because he could not have lived in our apartment with a tracheostomy and needing 24/7 nursing care. This was not an option we liked but it was one we had to accept.
I could also relate to the battle in which Shere Khan seriously wounds Baloo- the fight to protect and care for Ben did take a toll on me in many ways that have still left scars, but love and devotion kept me at his side and I have no regrets about that. Just like Shere Khan, ALS was a deadly force, but, unfortunately, in our true story, it was one that we could not outwit or defeat.
I don’t know that I would run to Baloo for help in a crisis, though he might be great comic relief! Still, Baloo was protective of Mowgli and he has a good message. As caregivers, we don’t often get to “forget about your worries and your strife” and life seems much more complicated than “the bare necessities.” However, it is so important to take the time to cherish and remember the simple and wonderful aspects of our relationships and life prior to caregiving. These are the things that let you remember who you were before you were in a caregiving relationship.
As for me, I think I was a combination of Bagheera and Baloo- a dedicated, thoughtful caregiver, acquiring skills and perspective during on the job training, with a sense of humor and incredible klutziness. Importantly, Ben always felt safe and secure with me. Some caregivers choose the role and others are thrust into it. In any situation, it’s important to know ourselves and to honestly assess the dynamics of our relationships and the shifts over time. Are you more Bagheera or Baloo? How do you define a good caregiver? Are there other characters in your story in supporting roles? These are all part of “the bare necessities of life” in caregiving.
Brave, Walt Disney Pictures, Pixar Animation Studios 2012
This is always a strange time of year. I feel like I spend the summer with the anniversary of Ben’s passing looming over me, wondering how it will affect me, what I should do and where I should be in grief and in life. Once August 26 passes, in a way, I breathe a sigh of relief. On the other hand, it leaves me feeling in limbo. Now what? There is more anxious anticipation as I await the start of a new school year. This year, the entire summer was off kilter due to the pandemic. I often had to check my phone to see the date. Time flew at the same time that it stood still. But, summer has come to an end. The school year will begin but in many ways it remains undetermined. I feel very disrespected as a teacher. It’s a lousy way to feel. I know it well, from the caregiving days of showing up and doing my best despite a lack of appreciation.
Maybe because it’s been five years and that feels like a big chunk of time, I’ve been feeling that it’s time to move forward on the ideas and dreams that have been percolating in my mind. It took a year from the time Ben left this world, but despite a lack of confidence, I started my blog, Pixie Dust For Caregivers, which has been a wonderful, rewarding experience. I earned my certification as a Caregiving Consultant, which bolsters my ability to support other caregivers, as does my volunteer work. I have wanted to do more, particularly with young people. Walt Disney says, “Think. Believe. Dream. Dare.” Believing in myself and daring are not things that come easy to me. Last week, I started to make strides that make me feel that I am finally becoming brave enough to realize my goals, dreams, and destiny.
Last fall, I talked to my wonderful principal about the possibility of reaching out to students who are caregivers- either for a parent/relative or even for siblings. I noticed that there were many amongst my classes- they could be frazzled, distracted, exhausted or emotional. Knowing how hard it was for me, an adult, to juggle caregiving with a full-time job, my heart went out to teenagers trying to process and carry out all of those responsibilities. My principal was very supportive of the idea and he suggested starting a club and talking to guidance counselors who could let students know about it, leaving it to the students to reach out to me rather than compromising their privacy. I positioned the club for the school as a club for caregivers but also for students who felt that they wanted and/or needed to take some time to care for themselves and others. As a group, we talked about volunteer activities. Shortly after the club got underway, the wildfires in Australia began and many students talked to me about the animals because they knew how much I love animals. The club’s first activity was a fundraiser for the animals in Australia, and they were very proud of their success. The kids are remarkably talented and had so much energy, creating social media posts, baking, and generating enthusiasm.
Once the pandemic hit, the idea of volunteer activities was more challenging, but we continued weekly remote meetings. The students wanted to create school-wide remote workshops and they had great concepts. I helped them with their ideas and their pacing, had them handle our club’s Instagram account, and provided any oversight necessary. It was fun and inspiring just to listen to them chat during our meetings- cheering, supporting and advising each other. Their friends and even some teachers joined us for our workshops, which was a great sense of community at a time when we felt isolated. For a while, I focused on my frustration that the club was not accomplishing my original goal of reaching caregivers. However, as I thought more about it, I realized that I was nurturing a caring community. I was working with a group of young people to explore the idea of showing compassion, even remotely. These were students who, like me, are care givers. This is another path of my journey. I just had to step back, reflect and see it.
I pursued potential volunteer activities and at a virtual meeting met a woman who coordinates volunteer activities for a local organization that provides services to youth removed from their homes and facing some very tough life circumstances. I reached out to her about the possibility of having my students volunteer as a group, explaining that we had done a student-led journaling workshop that I felt could work well with her population. Although the organization had not worked with teen volunteers before, after a Zoom meeting with the program managers, there was a feeling that their population might actually really appreciate interacting with kids around their age. They put a lot of trust in me to carry this out, and I have a lot of faith in my students, so I knew that with support, they would do an outstanding job.
It took a few months of coordination among four centers where the youth are living, but we did our workshop last week. I was so nervous, doubting myself and just hoping that it would go smoothly and be well received. In fact, it was an extraordinary experience. The youth were all engaged, spirited and eager to participate. My student leader was sensitive, articulate and thoughtful, and the club members who participated were animated and happy to interact and support the effort. It was truly heartwarming. My students said they felt very special that the teens were so open and honest. They loved that the youth were holding up their work to the camera so we could see what they created in response to the prompts, which included what is your favorite word, what makes you happy, what is a source of stress. The feedback I received from the organization was overwhelmingly positive. They saw in the reactions and responses of their young people that this was a much needed and valuable endeavor. The teens completely embraced the opportunity to express themselves and share their feelings with my students. Journaling could prove to be a tremendous inspiration and pathway for self-expression that will help all of these young people in life. The organization’s staff was very impressed with my students, which makes me very proud of and happy for them. The teens can’t wait for us to return! I was so pleased to share all of the positive feedback with “my kids” as I call them. A remote session and working with teen volunteers were completely unchartered territory for the organization, and the activity as a volunteer effort was new for all of us, but we achieved something quite wonderful! I can honestly say I followed Walt’s formula: Thought. Believed. Dreamed. Dared. And it went well beyond expectations.
No one knows how this school year will work, but I’m hopeful that the club will continue our partnership with this local community organization and, perhaps, even create new partnerships and expand our club. More important, we are expanding our group of giving, compassionate, givers of care and support. I may not have envisioned the club in this way, but when I opened my mind and perspective, I could see that I have, in fact, made a dream come true and successfully moved towards fulfilling what I’ve come to believe is my destiny.
The other dream I’ve had is to somehow build upon my blog. I’ve thought about ways to shape it into a book and/or develop related products and activities. I have put a lot of obstacles in my way, starting with a lack of confidence. However, the ideas just hadn’t quite gelled in my mind. Finally, I have had some breakthroughs and begun to write and explore aspects of my blog that can become a meaningful resource.
It’s a big challenge for me to be brave enough to acknowledge what’s inside of me in terms of my capabilities and potential. I will have to work hard to feel and maintain the self-confidence to continue to believe and dare to make my dreams come true. Throughout grief, I’ve taken a lot of time to reflect, largely sharing those reflections in the blog. I don’t think anyone ever really figures out life because there are always twists and turns. For me, that process of reflection has allowed me to explore who I was, who I am and who I want and am meant to be. I think Merida was right when she said, ““Our fate lives within us. You only have to be brave enough to see it.” I feel that I’ve made progress in my journey by virtue of being at a point where I’ve begun to take some leaps of faith. Of course, a little Bibbidi Bobbidi Boo wouldn’t hurt!
Today is five years. Five years. It’s been a difficult day, as it always is. I went to sleep reliving our last night together. I woke up reliving that last day. I’m still grateful that you left this earth surrounded by love and music. It still hurts to my core. I have repeatedly watched this video, which I made on the anniversary of my first year without you. I hope you feel the love. I believe you do.
Five years. Should those memories still be so debilitating? It seems like a milestone increment of time that should come with some kind of revelation. Should. I hate those “shoulds.” I think about the quote from Disney’s 2015 live action Cinderella: “Time passed and pain turned to memory.” Does it? “Should” it? For me, the pain is still here. It is not just a memory. Yes, it has shifted and it isn’t as acute on a daily basis. Triggers like this date are huge setbacks. I think that the quarantine period due to the pandemic has brought back so many of the caregiving memories. Although removed from those responsibilities and worries, with every excursion outdoors I have found myself dwelling on how it would have been if you were here and there was a constant threat of COVID on top of ALS.
Five years. I don’t know where I expected to be. I try not to concern myself about what others think about it. There are times when I feel like I’ve come far and times whenI feel that I am too consumed with our experiences and still in a relationship that I must face can now only exist in the form of a spiritual connection. I recently printed out all of my blog posts from the past four years. I spent the past several days reading them- 695 pages of thoughts, memories, regrets, concerns, wishes, successes, failures, steps forward and steps back. I can see that over the past five years I have ventured more purposefully into life. I have done a lot of reflecting. I have carved out a nice life for myself. I have also given myself permission to feel however I’m feeling. I find it satisfying to find ways to support other caregivers. I am proud that I have contributed to fostering a caring community within my school and I still intend to reach more caregiver kids. I have good friends- old and new- and I do things that I love. I even wore a wet suit to get in the water with beluga whales. Yes, I actually bought and wore a bathing suit. Early in my writing I expressed a reluctance, but also a sadness, that I did not know if I could ever enjoy Walt Disney World without you. Last year, I was able to return with Monica, Andi and Snappy (Abby 2.0) and we honored you while we also created new memories. It was heartwarming and empowering. So, there has been growth. Is it enough?
I feel a sense of bittersweet pride when I take delight in the new memories. I flounder when I think about the future, especially when I consider that I am alone. Yet, I know it’s time. I even bought a new set of picture frames to capture the new memories and give them a special place beside ours. When I say it’s time, it’s not because of the five year marker. If it had happened after two years, that would have been fine. If it didn’t happen for another five years, that would have been fine, too. Walt Disney said, “First, think. Second, dream. Third, believe. And finally, dare.” Thinking and dreaming are easy for me.When I say it’s time, it’s because I’m feeling prepared to try to believe in myself enough to dare to find my way. I think that’s a good thing, even with the pain.
I am not sure where I want to go from here, which is one of the reasons that I printed out my blog. Merida says we need to look inside ourselves to see our destiny, and caregiving and grief resonate so clearly within me. I think that this five year mark is a good time to look at this period of time and my evolving perspective. It gives me great comfort to know that you remain so vibrant in my treasure trove of memories. I feel that those memories propel me to further explore and discover my destiny. The pain is not just a memory. It is a palpable reminder of how much love there was and how much those experiences are shaping my life in positive ways. You will, of course, join me in this exploration. Please help me to confidently travel the new paths in work, life and love.
Five years. I continue to miss you every day. I’m getting more accustomed to finding ways to keep you with me as I continue my own journey. I do often feel alone. Sometimes, I think I keep you close to avoid those feelings. Thank you for sending me signs that you’re with me. I know there are people who don’t believe in that, but we always did. Thank you for letting me feel supported when I step out on my own. I will always feel a sense of anger that you were cheated of so much life and we were cheated of so much time together. I hope that you can feel that I often look at life through your eyes to experience things for both of us. I feel the pain of your absence, but I do strongly feel your presence, too. You are still so deep in my heart, woven into the fabric of who I am. Our relationship is not baggage, but rather experience that offers the important reminder that love isn’t always easy but it is, as they say in Bambi, a song that never ends.
I spent a lot of today looking at our videos and photos. There were a lot of tears but also many smiles. I have told Tinker Bell about you. Interestingly, she spent a lot of time on your Monsters, Inc blanket. She’s been very attentive, too. Maybe you had a little visit with her. Each night, we look at your picture which is my screensaver, and we say goodnight to you.
I do take every opportunity to honor you, my Ben. I hope you feel that. I hope that you are enjoying what I believe is your constant presence at Walt Disney World as the grim grinning ghost you wished to be, and that you are, as you always dreamed during your battle with ALS, walking, running, talking, singing, eating and playing music.