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What Merida Knew About Coming Through Grief And Seeking My Destiny

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I never thought of myself as a brave person, though as I’ve reflected on my experiences in caregiving, I have often turned to what Christopher Robin told Pooh: You are braver than you believe, stronger than you seem and smarter than you think. I have reshaped my life as I have looked towards the future, and I have forged those steps, small and slowly paced as they may be.  At the same time, I have wondered about my destiny. There are things that I would like to do, but there are things that have not come together. This has led me to question my direction, success, and how I define my life.

After several years of caring for my dad and for my husband, Ben, losing them also meant losing a large part of my identity as a caregiver. I was not only grieving their loss, but also grieving what had revealed itself to be a significant part of myself.  I was surprised to realize that I missed being a caregiver. Although it was challenging and fraught with tensions and sadness, it was the most meaningful and loving work I had ever done. While I floundered about what to do with myself without the role of caregiver, I came to embrace that caring for people is who I am, whether as a caregiver or a teacher. I channeled Merida and determined that this was my destiny- the purpose of my life- and I had to look inside myself and see that in a positive way. I pursued my certification as a caregiving consultant, though I was never exactly sure how I would or if I would professionally put that skill to use. As a teacher and a person who loves to be around children, although Ben and I had no children together, I often thought about children who were watching a parent with ALS or any other terminal disease. I volunteered with my local ALS chapter to conduct an event for children with a parent with ALS. We did crafts projects, they had pizza and ice cream, and everyone had a chance to talk. I was invited to speak with a group of ALS caregivers to share my experience, try to answer their questions and offer encouragement. I wanted to do more events, and still hope that will happen, but the organization focuses on other important services.

I discovered another wonderful organization called Hope Loves Company. This organization offers programs- particularly weekend camps- for families affected by ALS. I volunteered to do scrapbooking workshops with children at two of these camps, and those have been fun and rewarding. It’s both heartwarming and heartbreaking to look at the photographs that the children put into their scrapbook and to hear their memories and experiences. These camps offer a unique and invaluable opportunity for children who have ALS in common to be with others who understand their situations without explanation. Since many return to camps, the bonds established among children and adults are strong. I feel grateful to be a tiny part of that. I hope and plan to continue to volunteer with Hope Loves Company, though the camp locations are a bit of an obstacle.

I tried to convince myself that I was embracing my destiny, yet I was not feeling the sense of fulfillment I would have expected. Maybe teaching and caregiving are simply well aligned to my personality. Teaching is my current career, and it is rewarding, but there has always been a tug within me to do more. I feel positive about my blog and the feedback that it brings joy, comfort and guidance to readers, but have been feeling frustrated and stressed that I need to expand it without knowing exactly which way to go. The volunteer opportunities to reach children who are caregivers have felt like a genuine movement towards my destiny. I have struggled to find a perfect fit, though my background in arts, education and teaching clearly lend themselves to working with this audience. I have toyed with the idea of starting a meetup group for children who are caregivers, but the obstacles leave me somehow stymied. I continue to brainstorm with myself and others about ways to reach children who are caregivers. I have frustrated myself that I can’t seem to get where I want to go, and that has left me wondering- or even worrying- that I don’t know my life’s destiny. I skeptically wonder if the whole idea of a destiny is just a Disney kind of ideal, yet I thrive on Disney dreams and wishes. I have not been able to let go of the idea that there is more that I am meant to do, but I have felt lost, and without confidence, about how to move forward. I have questioned if I have the ability to move beyond dreams and creative ideas.

Last summer, as I was doing some planning before the school year, I thought about my population of students. Over the years, I have seen that many students are caregivers, either for their younger siblings or for a parent or other close relative who is ill. These are the students who sometimes attend class and fall asleep or cry with their heads down. Or, they may be the students who act out with negative behaviors. Their grades sometimes suffer and academics keep moving down their list of priorities. These were the students whose attention I got when I mentioned taking care of my dad or Ben. They were students who loved the opportunity to do an art project and express themselves. I was someone whom they knew understood their experience.  It occurred to me that while I was searching for ways to help children, I had children right in front of me who needed guidance and compassion.

I spoke to my principal about reaching out to kids who are caregivers, and at his suggestion and encouragement, formed a club designed for kids to participate in crafts and activities that let them care for themselves and for others. I talked to the guidance counselors and some teachers about my club so that they could suggest it to students who might benefit. The club has brought together kids who want to make friends, who may be a little shy, and are also interested in volunteer opportunities so they can help others. We have been doing crafts activities and exploring volunteer opportunities. Unfortunately, an after-school program is not always feasible when a student has caregiving experience. I remember running home as soon as school was over to take care of Ben and calling my dad on my way home to check on him, too. The club was a start, and that was good, but I kept focusing on what I was NOT doing and that I was not exactly fulfilling what I had determined was my destiny. I need to learn to work on that in myself.

After the Australian wildfires, students came to school very upset about the suffering animals. I am an animal lover and was also devastated. I approached my club members about doing a school fundraiser on behalf of he animals. It was short notice, but there was a school play coming up in just under two weeks, and I thought it was a perfect opportunity to engage students and their families. I was delighted to see the kids come together with such enthusiasm, along with other former and current students, to support the idea. Colleagues also joined our effort. The kids helped in many ways- brainstorming how to market the idea, designing social media posts, baking, and working at our booth after school for the two days of our school play. So far, in just two days, we have raised more than $300 for the Australia Zoo’s Wildlife Warriors program. We will continue this effort for a few more weeks. The kids feel a tremendous sense of satisfaction, which will hopefully motivate them in the future.

It thrills me to see the students feel positive and successful. It makes me happy to see them socializing and making new friends. They want to help others. They have shared some of their personal stories about issues that have affected their own loved ones and we are seeking ways to volunteer to support those issues. In fact, the students even said that they would participate in an ALS walk to support me, which touches my heart. Though, at this time, children who are actually caregivers are not members of our club, the members are kids who are caring and compassionate and are using those skills in positive ways. They are, in fact, a group of children who are givers of caring!

I think that as we navigate grief, particularly after spending a lot of time as a caregiver, we flounder with where we belong. I have met so many former caregivers who cannot get far enough away from that experience. I understand and don’t judge that or any other response. But, if we delve into anything, even if it is a return to work and not a change in direction, it is so easy to become shaken. And, changes in routine and structure often lead to floundering. I knew that I wanted caregiving and volunteer work to be a part of my life without really knowing what that meant. For me, there is always the fear that trying different ideas will lead to failure, and that the failure will mean that I was on a wrong or unachievable track. Participation as a volunteer has given me insight to what I can do, but also raised obstacles that made me question myself. I began to feel that spent a long time seeking to fulfill a desire to help caregivers, never feeling that I was grasping this vague idea I had of destiny. I was been pleased with my accomplishments, but I also questioned my goals, my strategies and what I thought was my fate.

Merida was right- I had to be brave and open to look within myself and see not only what I perceive as the failures, which hold me back, but also the positive things that, actually, have been leading me forward. I am discovering that it’s the concept of fulfilling my destiny that needs to shift. There is no finish line, no check-off list to that end. My destiny is within me and can be seen in the evolution of activities along an ever-changing trajectory that lets me know that I have touched lives in a meaningful way.  I have had to stop searching for this unattainable destiny and let myself be brave enough to look within and know that regardless of the activity and its success or failure, I feel most invigorated, rewarded and purposeful when I am working with and for caregiving and promoting caring.  For the first time, I am beginning to embrace the destiny that I’m already living, optimistic and open to bravely recognizing and tackling new opportunities.

Making a statement that “Fashion Cares About Australia”- raising money for the animals in Australia with baked goods and wristbands.

Fabulous poster made by a wonderful art teacher at school!

My contribution of cookies- grandma would be thrilled!

The Passage of Time and Grief- For My Mom

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We were always Mickey Mouse fans!

Today, January 13, 2020, marks 28 years since my mom, Sandra-“Sandy”- left this earth. There is not a day that I don’t think of her. As I revisited my very first blog post of this date, in 2017, I find myself reflecting on the passage of time as it relates to grief.

Even after all these  years, I find myself completely reliving the day she passed away. My mom died of a sudden, massive heart attack at the age of 59, without any prior medical conditions. 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 and we were left to pick up the pieces. In the first of the anniversaries of her passing, I was completely unable to function, staying home and in bed. I watched family movies and let the tears flow. I think that I actually welcomed the tears. I guess they were tangible expressions of my grief. Today, I went to school and was very distracted by a fundraiser that I am coordinating for the animals in Australia, but the memories loomed. It didn’t help that I am feeling under the weather. I always wonder what my mom would think of me and my life. She is still such a vibrant presence in my life. 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. I still, and always will, wonder if she would be proud of me.

These are the thoughts that I posted back in 2017. I am sharing them once again to focus on the beauty of her life rather than her death.

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, but I think we were fortunate to have had such a close relationship. We went to the theater and ballet together and spent a lot of time together and even with my friends. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events to see all we could and find the best sales. She was simply an adorable person. Being in London with her was also a hilarious occasion- I still remember laughing at how I would have to translate English to English because the British accent baffled her. Everything delighted her there, as it still delights me. We had so much fun. I loved my mom and she loved me, unconditionally. Frankly, I could not imagine living after she died.

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.

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, though it was frustrating to me that she pushed people away. 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.

London 1987. My mom could not wait to visit the Paddington store!

As time has passed, I think mostly of the wonderful memories of my mom and our time together. So much of 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!” (picture below, left) Another is watching and giggling through “The Little Mermaid,” especially because my grandma was straight-faced and completely bemused by our amusement.

I proudly say like mother, like daughter!

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 my 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 on those days he would plan something Disney-related, like our date to “Beauty and the Beast-3D” (click here for that post).

I enjoyed the movie “Brave” and the feistiness of Merida as she searched to find herself. Fortunately, I never had big issues with my mom. But, the scene in the clip at the bottom of this post says it all. Even after 25 years, I just want her back.

I have struggled, I have adjusted, and I have had to accept her death. Now, although there is still much pain, I must take comfort in knowing that she’s always been with me and always will live in my heart. On this day and always, I miss and I love you, Mommy.

 

 

A New Year With Old Emotions

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January 2020 Calendar Page

Welcome 2020. I’d like to say that I started the new year fully and enthusiastically embracing Walt Disney’s notion that “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”  After all, a new year heralds the new opportunities and perspectives. However, the new year, for me, also signals the beginning of two difficult months with sad milestone dates. January is the month that my mom died. February marks the birth and death of my dad, Ben’s birthday, the death of my grandma and the first anniversary of the loss of my cat, Disney.

February 2020 Calendar Page

I find myself torn between celebration and grief, and it’s not fun I keep running into situations when I am caught between withdrawing into memories and propelling myself forward. Maybe even more significantly, I tend to beat myself up about how I deal with this and if my choices are “appropriate” and “healthy,” even by my own standards.  I suppose it stands to reason that a calendar was the thing that recently triggered my preoccupation with this time period. When Ben was ill, I created photo calendars for him that allowed him to always look at our favorite Walt Disney World memories. I have continued that tradition. Although sometimes I look at the photos and lament the time that was taken from him and from us, most of the time the photos bring back memories that make me smile. A few weeks ago, as I thought to order my 2020 calendar, I began to wonder if I should change the calendar to include some of my new memories. It set off stressful internal frenzy that had me wondering what I “should” do.

I looked through my many new memories from the past year and felt good about them. However, in much the same way that my new ornaments after my solo visit to London did not feel right on my Christmas tree because our tree was covered with our memories (click here to read about that), I felt that the calendar needed to remain dedicated to only my memories with Ben. This unleashed a lot of thinking and worrying about whether I was really dealing well with grief. I worried that by keeping a lot of things as they have been, that I am not completely coping with the acceptance that Ben is gone. There were so many questions. Am I holding myself back? If so, why? Would I be disrespectful to Ben’s memory to change the calendar? Am I afraid that these changes will make the void that much bigger? Am I afraid of visually documenting that there is a shift in my life that includes new memories because a tangible product like a calendar makes that shift a blaring reality? Should I stop the calendar tradition or completely change it?  I dwelled on this for a long time, procrastinating ordering the calendar. I was frustrated with myself, comforting myself with reminiscing about the old memories while reluctantly enjoying the newer memories.

July 2020 Calendar Page. Pictures from our last magical visit to Walt Disney World in July 2014.

Ultimately, I chose to keep the calendar the same. I was not ready to change it. When it arrived, until January 1, I kept it in its envelope without even looking at it. When I did open it on New Year’s Day, it was still a welcome comfort to look at each month’s collage and revisit those wonderful times. “Some people think a great deal too much. Of that I’m certain,” said Mary Poppins to Michael  in Mary Poppins Returns, as he is lamenting how he’s dealt with his children and the grief that they are all feeling, as well as how to solve his issue with his house. What I realized in my overthinking and worrying was that there are certain objects, like the calendar, that simply have a special place in my heart. However, I know in my heart that I am now in an emotional place where I can also happily, and even proudly acknowledge that I have indeed created new memories and I have rediscovered my sense of whimsy. I indulge my zest for life and I am grateful for wonderful friends, opportunities and occasions. A calendar does not have to represent these events. Right now, my calendar remains a special tribute to the life I had with Ben that gives me comfort and joy even when there is also sadness. I have not dismissed the idea of doing a different calendar next year, or sometime in the future. I decided that it’s fine if I continue my tradition, or even if I don’t. I have to let go of making constant assessments of what is right or wrong and defending myself to myself.

I know that these two months will be emotional. I also know that I am so fortunate to have been surrounded by much love in my life. It is my hope, wish and goal for myself that despite the sadness, I find new ways to balance past and present as I dare to discover a magical future.

I wish everyone a new year sprinkled with pixie dust.

October 2020 Calendar Page. Our favorite time to be at Walt Disney World- Halloween!

How “Up’s” Carl and Ellie Helped Me Cope With Grief During The Holidays

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It’s Christmas. Since I’m technically Jewish, it shouldn’t matter all that much, and this year Chanukah and Christmas overlap. Christmas is a big deal to me and always has been. Since I was a child I was always captivated by the colorful trees and fun decorations. I loved coming into the city with my mom to see the beautiful store window displays and the giant snowflake on Fifth Avenue. In a hectic city like New York, the holidays bring out a kinder, prettier, more whimsical side of people. I like that. For me, Christmas is the time of dreams and dreaming, of taking the time to reach out to people who are always in your hearts. Chanukah is a holiday and I do light the menorah and respect the traditions, but for me, it isn’t a season or a tone of the year in the same way as Christmas. I watch the Hallmark movies and yearn for what in my mind Christmas is all about and what it looks like. With Ben, I was able to have Christmas, even if it was simply wrapping gifts that he was bringing to his kids. Without people with whom I share my quirky sense of holiday traditions, I distract myself with a whimsically decorated apartment and the magical sights of the city, but I often feel the weight of a life that still frequently feels lonely and ungrounded.

Memories play an important part in all of our lives, for better and for worse. Now, in addition to my memories of many fun Christmases spent with Ben, I also reflect on how I have spent the holidays since Ben and my dad became ill and since they have left the world. My dad died in February 2014, and the holiday season that year was seen from the windows of the train and car service to and from the hospital and then the hospice. When Ben was ill and ultimately homebound, I decorated the apartment, which added some fantasy to an otherwise depressing environment cluttered with life that had been pushed to the side to accommodate medical supplies and equipment because ALS took over literally and figuratively. Those memories continue to fill my mind at this time of year, though I continue to decorate and call upon my holiday spirit. I put Ben’s favorite ornaments and decorations where he liked them. Since he was confined to his desk and chair all day, it was important to place things where he could see and enjoy them. The first ornaments I place are the photo ornaments from Walt Disney World. I love those ornaments because we spent so much time choosing the precise photo to represent each trip, even though the photos also reflect the physical changes in Ben that resulted from the ALS. Now, as I place the ornaments in those same locations, I talk aloud to him about it, often smiling. People might think I’m crazy, and maybe I am, but I know that he hears me.

Some of the ornaments that Ben especially liked to see were Sully, Buzz, Mulan, our photo ornaments.

Two years after Ben “left,” as he called it, I got my first new ornaments during my visit to London. I chose lovely ornaments from Harrods and Liberty, but they didn’t feel right on the tree because they weren’t ours and most of the ornaments were Disney ornaments that we chose together. At that time, the ornaments unnerved me because, although they represented a favorite place and a milestone in my life that I was once again able to travel without caregiving worries and responsibilities, I also felt that they conveyed that I had stopped grieving, which was not true. It continues to be a balancing act to deal with grief that never really goes away, and coexisting with those feelings but engaging with life, finding joy again without guilt and anger.

Last year, I purchased my first Disney ornament without Ben. It was a Mary Poppins ornament and I know that he would have liked it. Mary Poppins is very dear to my heart since childhood. I love the ornament, but I admit that it carries the burden of always being seen as the first Disney ornament of which Ben was not a part. Still, I have to remind myself that healing happened- until that point, I had not been able to consider new Disney ornaments. I realized that I was ready for my tree to evolve into a representation of all the beautiful memories that Ben and I created, and of the new ones that I am creating, with the hope and wishes for the magic that Christmas seems to signify for me.

The scene with the penguins was always a favorite. Now the ornament is next to our photo ornament and one of Ben’s heroes, Buzz Lightyear.

When I was in Walt Disney World this past October, I purchased an ornament from Mickey’s Not So Scary Halloween Party. I have had it hanging on a lamp and thought I would put it on the tree. I put it on the tree and removed it several times. Halloween and that party were our most special event and it felt almost disrespectful to put the ornament on the tree, as if it was a slap in the face to Ben that I could go to the party without him and then put a reminder on our tree. Finally, I decided to keep it on the tree because it accurately represented the conflict of struggling with his loss, carrying our wonderful memories with me and continuing to live and enjoy things we shared while acknowledging that they will never be quite the same.

This year, I spotted a very sweet ornament of Carl and Ellie from Up. It was a memory of early in their relationship, captured within a clear glass ball. That ornament touched my heart. Up is a movie with powerful messages about loss, grief and continuing to live. This ornament encapsulated for me the message that I have so many beautiful memories with Ben, and my tree is one way that I can visually display and recall those memories. My heart is fragile, like the glass that captures the memory of Ellie and Carl, but the memories are vivid and strong and beautiful, and they sustain me. The treasured memories surround each other and are, and will continue to be, joined by new memories. They are all precious parts of my story.

I think about Carl looking through Ellie’s scrapbook and reading her final message, “Thanks for the adventure. Now go and have a new one.” Here is the clip. I have put the ornament of Carl and Ellie on my tree as a reminder that although holidays are harder times without Ben, and there is definitely a void, adding new ornaments represents a way that I am coping with loss and finding new adventures while treasuring Ben and the memories we shared.

“Up” Copyright © Walt Disney Pictures, Pixar Animation Studios 2009

It has been more than 4 years since Ben left this world. I say that because I want anyone struggling to know that the healing has not been happening quickly for me, but I have noticed and assessed it. We all grieve in different ways and in different timeframes. Sometimes, we see progress in very subtle ways. We have good and bad times. Sometimes we need the non-judgmental support of loved ones. Blogging and journaling have helped me to identify how I have coped, or not. I wish for everyone to have a holiday season in which they feel loved and supported and that allows them to embrace in some way good memories and the hope of new ones.  Please reach out in the comments or privately if you would like to share your strategies for coping with the holiday season.

The December page from my calendar is filled with our memories from Christmas at Walt Disney World in 2007.

Walt Disney: A Legacy of More than Animation (12.5.1901-12.15.1966)

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Walt Disney, Walt Disney World

Walt Disney’s legacy lives on so vibrantly and timelessly in so many ways that it’s hard to believe that today, December 15, 2018 marks 53 years since he left this earth. He’s been a part of my life for as long as I can remember. I have such vivid memories of my mom talking about her favorite Disney movies and how she loved Mickey Mouse from the time she was a child. Mary Poppins was the first movie I ever saw in a theater. It just amazes me how Mickey and his friends touch the hearts of generation after generation. Now, I love to read about him and get a glimpse into his artistic vision and the building of his business enterprises. His belief in himself and commitment to his art are things that we can all learn from. I believe that Walt Disney’s words of wisdom and legacy will live on, as Buzz Lightyear would say, “to infinity and beyond.”

My blog was inspired by the way that I was affected by Disney films, characters and lyrics in light of caregiving and loss. As much as I love to be in NYC during the holiday season, I do have a sense of melancholy. So many of my more recent holiday memories have sadness. My dad was in the hospital and then a hospice during the holiday season of 2013 and the lights I saw were from the windows of a car that took me home from visiting him or the train to and from Long Island. When Ben was ill we couldn’t go together to see the holiday displays and I rarely had the time to go on my own. When I did have a little time, I either felt guilty or couldn’t really enjoy anything. It took a couple of years before I could bring myself to visit the tree at Rockefeller Center and look at the beautiful store displays.  I guess these memories loom, although just today I went to Rockefeller Center to admire the tree and other holiday treats.

Today seems a perfect day to honor Walt’s memory by reflecting on some of his words of wisdom.  They help me to look to the future with optimism, and I think that’s especially significant as we approach a new year. Also, they make me think about the concept of a legacy. My parents left me with a legacy of kindness, loyalty and compassion and always having a sense of humor and whimsy. I hope that I will always honor them and leave a similar legacy.

“That’s the real trouble with the world. Too many people grow up. They forget.”

ALS, Walt Disney World, Lilo and Stitch

The very first time we met Stitch, October 2006!

As someone who still has a lot of my childhood dolls and can’t resist adding new ones to my collection, it is obvious to everyone who knows me that I completely embrace the idea that you need to hold on to your inner child.  As I’ve said, my inner child is very much at the forefront of who I am. For me, watching a Disney film, and imagining a fairy or fairy godmother at my side, also allowed me to escape the realities of caregiving and loss. Ben always said that he loved Walt Disney World because you simply forgot your problems. With a diagnosis of ALS, his problems were huge, but immersed in that fantasy land, he was a big kid having a wonderful time, even despite his challenges. For him to be able to feel that sense of joy and excitement was a gift. Walt Disney envisioned and provided that magical setting. I never want to lose the attitude that allows me to step right into the fantasy the way I did with Ben. I never want to stop wishing on stars or forget the wonder and delight that I had as a child.

“Why worry? If you’ve done the very best you can, worrying won’t make it any better.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!

This is absolutely true. Alas, I am a worrier, and I have to work on this, but Walt was right. I can’t say that any of my worrying helped, although perhaps thinking through worst case scenarios may have helped me prepare for a variety of situations. I’ve heard that worrying burns calories, but I’ve seen no indication that this works! I worry now about my future, particularly without much family. I worry that I will never find love again and I will be alone. But, the worrying isn’t going to affect any change, so it’s time to proceed in the best way I can, and make decisions I feel will help me to create a new life, or, rather, enhance my current one with new love, laughter, joy and peace.  I’m going to try harder to listen to Walt on this piece of advice!

“Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Epcot

2010- First use of the scooter to go to Epcot.

There is more light in my life now, and less guilt about feeling happiness, and I know that the people who love and care for me are glad to see me enjoying life again. But there are also the shadows, and I am not someone who likes to, or can, put on a show of emotions. The good and bad moments are all okay. They make me human.

“I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Wishing Well

2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.

Some people might think that my obsession with all things Disney and talk of pixie dust and wishing on stars is silly. Well, I think silly is just fine (okay, within reason.) I like to think that it is my inner child reminding me of possibilities and letting me believe in my own happy endings. But, just like Walt, I am realistic and I have experienced enough of life to know that things get complicated, and sometimes, downright ugly. In the face of life’s complexities, it helps me to stay positive if I escape for a while into a Disney frame of mind.

“In bad times and in good, I have never lost my sense of zest for life.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This quote made me think of Ben and his determination to enjoy life despite ALS. He surrounded himself with music and technology, and he ventured into the world and enjoyed all that he could with a zest for life that, I believe, let him manage the disease well for about four years. It was certainly a good lesson for me.

“We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”

Ben would not be at all surprised that this Eeyore came home with me.

This quote is my inspiration for the future. It’s allowed me to reach out to people, to travel to new places and make dreams come true- I even returned to Walt Disney World, paying tribute to Ben but also creating new memories with dear friends. Throughout these experiences, I did miss Ben. I also struggle with feeling lost and lonely. At the same time, I believe that my curiosity, desire to learn, love and compassion will keep carrying me forward to find new and more love, laughter, peace and joy. I feel cautiously optimistic about the exploration.

“All our dreams can come true, if we have the courage to pursue them.”

My buddy is Cruz. Summer 2019- finding happiness! Meeting otters- I made a dream come true!

I think that I finally have the strength to summon the courage to follow my dreams. It feels pretty great, and yet a bit scary, to say that. I do believe that pixie dust would help.

“Laughter is timeless, imagination has no age, dreams are forever.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- This is one of my very favorite pictures of Ben because he was so full of happiness and laughter. Here, he was laughing at me when I met Tinker Bell.

This is one of my very favorite quotes. Laughter, imagination, dreams and, of course, love, were the key ingredients in surviving years of caregiving and loss. They have always been there when I needed them, even if, at times, they felt out of reach. This is something to remember always. Never lose hope. Never lose the spark of a dream.

“First, think. Second, believe. Third, dream. And finally, dare.”

ALS,Caregiver,Caregiving,Disney,Dumbo

Here I go!

That sounds like a good plan! I’m hitting bumps in the road and struggling with confidence, but I’m working on it. Thank you, Walt

 

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