“In my heart is a memory and there you’ll always be”- Ten Years Of Missing My Dad

My dad and I

Today marks 10 years since my dad, Jacob, left this world. Not a day goes by that I don’t think of and miss him. I miss his laugh, his kindness, his advice, his sense of humor, and his history lessons. He was a proud Marine, and a real patriot, and I’m glad he’s not witnessing the current events in this country. He’d be pretty devastated, and he would also be reminding me that history does indeed repeat itself.

Right now, we are having a snowstorm in New York City. Schools have gone remote. I am reminded that the day my dad passed away, there was also a snowstorm, and it was worse than what we are seeing today. I had called the hospice to check on him because he did not answer his phone. As it turned out, the staff was about to call me because his “status changed” and he did not have long. Unfortunately, the storm knocked out all modes of transportation. No trains, no buses, no car service. I had spent almost every day with him, had taken family medical leave, and although I returned to school a few weeks prior, I was at the hospice on weekends and talked to my dad several times each day. I was utterly devastated that I could not get to him on this day.

The nurse put the phone to his ear and I told him how much I loved him, that I would miss him, that he was the best dad. I also told him that if he had to go, it was okay. He was not conscious, but I have to believe that he heard me. I gave him the permission to go that I’d always read and been told is what should be done. I left school for home, to get Ben situated in case trains began to run again. As I walked through the door, the phone rang. My dad was gone.

Ten years have passed and this remains a vivid memory. I always wonder with milestone dates, if I am where I should be. I don’t know. Since animals- especially our dog- were so important to my dad and to our family, the quote that resonates today is, “Goodbye may seem forever, farewell is like the end, but in my heart is a memory and there you’ll always be.”- Widow Tweed, The Fox and the HoundMy memories are very important to me. I relive them often, and I’m sure that some people would tell me I live too much in those memories. I guess I am glad that I have gained a comfort level with my ways of grieving and I am able to dismiss a lot of opinions. I am grateful to have had a strong relationship with my dad and I take that with me everywhere I go. I always will. Despite the sorrow that does still weigh me down, my experiences and memories with my dad and Ben have shaped these ten years in positive ways. I like to believe that my dad would be proud of me and it is always a driving force in my endeavors.

February is a lousy month. Tomorrow is Valentine’s Day, but it is also the day my aunt Eleanor died. Thursday is my dad’s birthday. My grandma died on February 23. So, for now, I want to share the notes I shared with the Rabbi from the hospice, who conducted my dad’s funeral. These show my dad in life. Daddy would say he did not want any attention, but he deserves it.

My dad was a one-of-a-kind. He was so funny, so kind, so generous, but he liked you to think he was Archie Bunker. I don’t think he ever knew or believed how loved he was.

He was such a proud Marine. He wore his USMC cap so proudly and loved to run into other veterans and share stories. But I was his Private Benjamin. The first time I drove him to the VA out in Northport he just shook his head when I clapped and waved as the guard at the gate saluted us when I flashed Daddy’s VA card. Daddy saluted, shook his head and laughed.  Although he was not an observant Jew, his Marine Corps experience, where he was one of 3 Jews, gave him a sense of pride in his religion and he did not tolerate any discrimination, gaining the nickname of “that crazy Jew” because he would fight anyone who even looked like they were going to say anything derogatory. He trained down south during the days of segregation, and he remembered with sadness and contempt the way he was not allowed to sit on the bus with his African American USMC buddies and how disgusted he was by those attitudes because it was so different than up here.

He lived and breathed dogs but really loved all animals. When I was a little girl we used to read the Dog Breed book all the time. I knew every breed and I used to say that I couldn’t be Daddy’s daughter if I could not identify every kind of dog!  But, he took great pride in his dogs and Schnauzers were our breed. The whole neighborhood knew my dad as Dulcie’s dad. And we all lived by the motto of “love me love my dog.” He was delighted when a group of kids told their sister, who was afraid of Dulcie and making a bit of a scene, to “go inside if you don’t want to play with Dulcie” instead of telling Dulcie to go away. When he was selling our house, a real estate agent brashly told him to put the dog outside. He told her she could stand outside but the dog lived there. She left and never came back. My dad was fine with that! He used to leave messages for my cat when he knew she was alone and let her know that it was a grave injustice that her mommy left her alone.

He was so proud of me and excited that in 2010 I finally was able to launch my dream pet souvenir business and he loved helping me with ideas and business advice. Just last weekend Ben put pictures from a recent dog event I was asked to participate in on his iPad so I could show them to my dad. He loved to look at the pictures and was interested so in my life that he even knew my doggie friends by name.

He had such a good sense of humor and was also a prankster. He got such a kick out of calling companies to review their products or ask questions and having them send him coupons.  Once he called me laughing so hard about his call to Uncle Ben’s Rice. He drove the poor girl crazy asking about the measurements, explaining that his mother in law had always cooked for him but now he was on his own. She asked him to hold on and he heard her say, “I don’t know if this guy is sorry that his mother-in-law died, but I sure am!”

He liked teasing my grandmother, sometimes by pretending to sneak into the kitchen to steal her freshly made matzah balls, to the point where she started counting them! To this day when I bake the cookies and hamentashen she taught me to make, I count the number of each shape and/or flavor!

He loved to laugh and to make people laugh. His facial expressions were priceless. His humor made stressful situations tolerable. I remember giving him books on Jewish humor and how he would call me to read some of the jokes, laughing so hard with his cutest laugh. He called me when he was watching our favorite comedies to recount a scene as he was watching it, and his laughter was so contagious that it always made laugh. Some of our favorite quotes came from Mel Brooks’ “The History of the World: Part 1,” “Tootsie,” “Guess Who’s Coming to Dinner” and “Hope and Glory.”

My dad loved history and military aviation. He knew so much about WW2. It was a challenge to find books about things he didn’t know, but he loved to read. I used to call him from Barnes and Noble and read the summaries of the new arrivals to see what he responded to. When there was someone or something that he didn’t know well, I knew I had a winner! Ben and I used to find documentaries for him and Ben would convert them to DVDs. He loved seeing footage he had never seen, and it wasn’t easy to find it!!!  And we had many, many discussions about history.

As much as he loved gadgets, he had no patience. While he screamed about the bad instructions, I constructed tv stands and bookshelves. FIOS drove him crazy. I got many frantic phone calls when he could not get the tv to work. Ben and I downloaded manuals with the remote layouts so we could walk him through possible solutions. Ironically, he was a master at his trade in heating/air conditioning and was incredibly good at home repairs, helping neighbors and families with boilers, clearing floods, making heating/A/C decisions. Even from the hospice he gave me the perfect solution for dealing with the radiator and my freezing apartment.

He was like a father to Ben, who has ALS/Lou Gehrig’s disease, and was always looking for any gadget that would make his life easier. And they often do!  I never had dinner with him where he didn’t order something for me to bring Ben, who cannot really get out very much at all any more. In the days when we did visit my dad, he would show Ben his gadgets, books and WW2 bullet casings and they would sit and talk about the wars. They both loved it.

I always knew how loved I was and I loved him. We used to speak maybe 5 or 7 times a day, sometimes to share what was on TV, or make each other laugh, or more recently, when he was living alone, I would remind him to eat and see how he felt every time I had a free period at school.  Because I was a Spanish teacher he started watching Spanish television and he would call and ask me what words meant. I used to joke with my students that he worked harder than they did. But, it also intrigued them that my dad cared so much about what I did. And that was an important life lesson for many of them.

He was a man who was so devoted to his family. He always said that he just loved to hear my mom and I giggle with my grandmother. He was so proud to send my mom to meet me in England, even though both of us were amazed at her inability to work a luggage cart! He took care of my grandma, his mother-in-law, driving to and from work in Brooklyn to Woodmere to drive her to the beauty parlor, wait for her to be finished, drive her home, and then go back to work. He was honored and almost humbled that Uncle Larry called him every single Friday. He really missed Uncle Larry. There isn’t a friend or a child of a friend of mine that he did not ask and care about.

He was generous and was more comfortable giving than receiving help.  He taught me by example to be kind, generous and compassionate and to have a sense of humor. I already miss the phone calls. But I am still talking to him.

Wisdom From The Silly Little Bear On National Winnie The Pooh Day

Halloween 2012. Eeyore’s wearing a birthday hat!

Today is National Winnie the Pooh Day, in honor of A.A. Milne’s birthday. Pooh and his 100 Acre Woods friends have a most special place in my heart and memories. My relationship with Ben blossomed around Piglet and Pooh and it is one of the ways Ben won my heart. When Ben and I first started dating, we often walked to the flagship Disney Store on Fifth Avenue in Manhattan. It is no longer at that location. We wandered the three  floors and I often left with little gifts- the courting phase of a relationship is fun, indeed!

Having spent increasing amounts of time with me, Ben was becoming fully immersed in the Disney mindset, and loving it, sometimes to his own amazement.  One day, as we strolled through the store, Ben called me over to look at a figurine, exclaiming, “Abby, look! It’s Piglet and his best friend, Pooh!” I stared at him, speechless, and then started to laugh. He shook his head, laughed, and said, “I was macho before I met you!” Truth be told, he was not so macho. He was a big teddy bear, and his great hugs could calm me down and completely surround me with love. He was a big kid at heart who indulged my inner child, and that was us.  He bought me that figurine as a surprise, and it will always be so special to me.

Disney Store,Winnie the Pooh,Piglet
Piglet and his Best Friend Pooh! A very special figurine with very sweet memories.

Today seemed a good day to revisit some favorite quotes from the silly little bear and his friends. They resonated during my caregiving days, through the darkest days of grief, and they continue to be meaningful and touching.

In the Disney Pooh’s Grand Adventure: The Search for Christopher Robin, Christopher Robin tells Winnie the Pooh, “If ever there’s a tomorrow when we’re not together, there’s something you must remember…You are braver than you believe and stronger than you seem and smarter than you think…. But the most important thing is, even if we’re apart, I’ll always be with you. 

I am still so deeply connected to my mom and dad, Ben, grandma, aunt Eleanor and many others who have left. They are all a part of who I am and are unquestionably always with me. The truth is that it is not always enough- sometimes not even close to being enough- but it is a lot.

“I don’t feel very much like Pooh today,” said Pooh.

“There there,” said Piglet. “I’ll bring you tea and honey until you do.”

That’s caregiving. It’s that simple and that complicated. My presence was the tea and honey that my dad needed to feel more secure and cheered. As ALS took away his abilities, there were times that Ben was understandably frustrated and sad. All I could do was be there, trying to bring him comfort.

Sometimes it’s a matter of being present, sometimes it’s being a good listener, sometimes it’s ensuring that routines- including medications- are followed. Mostly, it’s about caring to figure out exactly what will soothe the caree at the moment. For Pooh, honey was always a good solution. It’s not always that easy. But communicating the desire to be there, to help and support, can only strengthen a bond. Although we could lose patience with each other, and sometimes we both needed our moments to feel down, Ben knew that I would always at least try to find the thing that would be his tea and honey.  And, I knew that he would find a way to show me he loved me.

In another conversation:

“What day is it?” asked Pooh

“It’s today,” squeaked Piglet.

“My favorite day,” said Pooh.

It’s hard to imagine that any day with ALS, or any terminal illness, can be a favorite day. There were definitely the big highlights, like when Ben woke up on January 1, 2015, and he said that he had such a fun New Year’s Eve. I had ordered matching Mickey Mouse and Friends pajamas for us and even for my cat, Disney. Ben always loved the fireworks at Walt Disney World, and I found a toy that supposedly simulated fireworks, with sound effects and LED light “fireworks” that were activated by a remote control. We played the soundtrack to the “Wishes” Magic Kingdom fireworks show and Ben chose the sequence for our fireworks show while we had our photos scroll on his computer. It was pretty hilarious to pretend we were at the Magic Kingdom as we watched these pretty unconvincing fireworks splash on the wall. It felt almost magical to laugh and enjoy the evening. That silly celebration was a most favorite day and is now part of my treasure trove of beautiful memories of moments sprinkled with pixie dust.

Any days spent at Walt Disney World were favorite days when Ben felt free as he rode around in his scooter or electric wheelchair. The Disney magic allowed him to enjoy most of the attractions and to temporarily abandon his worries.

Once he was homebound, Ben’s days did not vary much. But, every day that he was okay and things went smoothly, when we handled or averted a crisis, solved a problem, and enjoyed each other’s company, was a favorite day. We recognized, acknowledged and treasured those.

Winnie the Pooh commented, “There’s always time for a smackeral of wonder.”I think that’s true. And, it’s so important. My dad never lost his desire to learn and help others. Ben never lost his curiosity, sense of humor and ability to be inspired, particularly by music. When we were able to go to Walt Disney World, his inner child shone, and he marveled at everything he saw and all the music he heard. When he was home, he watched movies and documentaries and listened to music, always questioning, always learning, always with a sense of wonder and delight. I think that helped him to navigate ALS. Always finding time for a “smackeral of wonder” is good advice for all of us.I believe that Ben would be especially happy that these lessons came from Piglet and his best friend, Pooh.

One of the most profound and bittersweet quotes from Winnie the Pooh, is“How lucky am I to have something that makes saying goodbye so hard.”  This time of year, in particular, is filled with a lot of milestone dates. I begin each New Year commemorating the anniversary of my mom’s passing. Then, February is a month filled with reminders of the many goodbyes I have had to say. The month is marked by my dad’s birthday, Ben’s birthday, and the anniversary of the passing of my grandmother and aunt Eleanor. It is also the anniversary of the passing of my sweet cat, Disney.

My memories are important to me. They are everywhere. Sometimes past and present blur in my mind and the reminders of the losses and the goodbyes are crushing. At the same time, I am so grateful to have had these people in my life. And, I’m grateful to Winnie the Pooh and his friends for helping me to find wonder, whimsy, insight and a positive, comforting, and honest perspective. Thank you, A.A. Milne, for bringing them to life.

October 2012
Ben would not be at all surprised that this Eeyore came home with me. Making new memories in 2018, but carrying Ben in my heart.

My Mom- Always With Me

Today marks 32 years since I lost my mom. Yes, a lot of time has passed, but this day still stings. Although I like to be optimistic at the start of a new year, my new years are always darkly colored by the veil of this anniversary, and a February filled with more sad milestone dates. I have written about the circumstances of my mom’s passing and I do not want to rehash that. You can read my original tribute with those details by clicking here. All these years later, I continue to miss her, to wonder what she would think of my life, and to wish she was here. There is no one more appropriate than my mom to be honored with a Disney kind of tribute.

Reflecting on my loss, I thought about Mary Poppins Returns. Mary Poppins has been a favorite character since I was a child and she continues to captivate me. This new film is not a remake, which is probably a good thing, because the original was a spectacular entity unto itself which could never be recreated or duplicated. This new film is a treasure in a different way, with messages that resonate for me about love and loss.

Mommy at Walt Disney World appropriately with a Mary Poppins topiary, in the mid-1980s.

There is a touching song at the beginning of the film in which Michael Banks (yes, all grown up and with his own children) is looking through his deceased wife’s jewelry box and talking aloud to her about missing her advice about ways to take care of the children. Michael struggles with losing the family’s house because he feels his wife is so present there. As the children help Michael come to terms with this additional loss, he realizes that his wife remains present in the children and her spirit will not disappear with the house. He shares with the children, “Your mother’s not gone. She’s in your smile, and your walk, John, and Annabel’s eyes… She’ll always be with us wherever we go.”

I love when people tell me that they see my mom and dad in me, not just because I do look like both of them, but because they have so influenced the person I have become. To this day, I have a hard time when I see that restaurants and shops that I visited with my mom close and disappear from the landscape of New York City. It feels like I have lost the tangible evidence of our memories, taking them further and further away. I sometimes need to remind myself that I carry all those memories and the relationships within them in my heart, and by sharing them, I pass them along.

I inherited my mom’s love of Disney and her vibrant inner child and sense of whimsy, and she is always vivid in my work as an educator. For the second time, I took a group of students from my club to see the Rockefeller Center tree and holiday windows. They like hearing about how I did these things with my mom. I know that she would be thrilled that I am giving this opportunity to young people. So would my dad. They are a part of me and how I live my life. I am proud to be able to honor them. When we watched Coco and discussed Day of the Dead, I was not afraid to be vulnerable and let them know that I like the concept of being visited by my loved ones and their always watching over me. It has helped several students face their own feelings with regard to loss. Last week, a student opened up to me that she was struggling with grief. I shared with her an Eskimo proverb, “Perhaps they are not stars in the sky, but rather openings in heaven where our loved ones shine down to let us know they are happy.” She told me that she printed out the quote and put it on her wall. It warms my heart to know that my experience supports others, especially young people. In my sad moments, it is consoling that my mom is also helping me to bring wisdom and caring to others.  

Celebrating our Schnauzer, Windy’s, birthday

As I have delved deeper into writing for children, I think about how much fun my mom and I would have had working on stories together. She saved a lot of my own childhood writing, and I will look at those stories and hopefully find some inspirations. I hope to find some of my mom in those stories, too. I know that I will bring her with me into my endeavors.

Mommy never learned how to ride a two-wheeler and she proudly drove her huge tricycle, always with our (probably somewhat humiliated) pup in tow.

I do miss being surrounded by genuinely loving family. It would sadden my mom that I had boundaries for family. At the end of her life, although she did begin to distance herself from some relatives, she tolerated a lot to placate my grandmother. I do not possess that level of selflessness. I like to think that at least my mom respects and is happy that I am at peace with the way I live my life and with my chosen family of friends. I will always aspire to have a fraction of her selflessness.

Despite missing her terribly, I remind myself that maybe I shouldn’t refer to today as the day I lost her. As Mary Poppins said, “You can’t lose what you’ve never lost.” This beautiful song says it all so well.

The Place Where Lost Things Go
Composer: Marc Shaiman
Lyrics: Scott Wittman
Performed by Emily Blunt (Mary Poppins)

Time to close your eyes
So sleep can come around
For when you dream you’ll find
All that’s lost is found
Maybe on the moon
Or maybe somewhere new
Maybe all you’re missing lives inside of you
So when you need her touch and loving gaze
Gone but not forgotten is the perfect phrase
Smiling from a star that she makes glow
Trust she’s always there
Watching as you grow
Find her in the place where the lost things go.

Days like this, where I look though photos and reflect on memories, are sad yet oddly welcome. Tears are okay. I find it self-affirming to remind myself of how much of my life has been motivated by and instilled by the love of my mom (and my dad, of course). Now, they live in me.

Mommy, I love and miss you today, and always, and hope I make you proud.

2024- My Year to Step Through Doors

It has taken me a while to get a grounding on my thoughts as the new year approached. I have found myself searching for the words and thoughts that best convey my feelings. I am not one for setting specific resolutions. For me, despite cautions about looking back, it is important to revisit how I feel about how the year went, and what I might like to feel like this year. It is a time to identify my growth and achievements, but also to focus on my struggles and look for inspiration and motivation. Of course, Walt Disney provides my guiding wisdom and captured my sentiments so well in this quote: We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths. I have referred to this quote a few times in this blog. It resonated when I was beginning to reshape my life as the depths of grief subsided. It continues to resonate as I choose new paths that I hope will lead me to fulfillment.

The past year had professional and personal highlights. I traveled, made strides in my writing, brought awareness of the needs of student family caregivers to my school. I made new friends and am at peace with shifts in friendships. Retirement is within reach, which makes the stress of teaching and our education system somewhat and sometimes more manageable. I have expanded my support group and workshop offerings, which is creating a whole new intriguing path. When I get nervous about the reality of my next steps, I remind myself that Walt Disney said, Fantasy and reality often overlap.”

I have been thinking about the film Up, and when Ellie wrote to Carl in her journal, Thanks for the adventure – now go have a new one!” I have opened new doors and continue to do so, I have had new adventures, and I have created a new life for myself. Lately, however, I find myself thinking that in many ways I am only standing in the doorway, not willing to fully step through into new adventures.

Although I have such a wonderful network of friends and colleagues, I still struggle with feeling very alone. Ironically, I am very independent, and grateful to be that way. If I want to go somewhere, or see a show, I am perfectly comfortable going by myself. Maybe even too comfortable. However, I am caught off-guard when doing something as simple as strolling, by a sense of aloneness. Yesterday, walking through the first snow in New York City, I immediately recalled how I would record these events for Ben when he was homebound. I even brought him snowballs. I whipped out my phone and recorded the snowfall as I always did. And I cried. I don’t know if that feeling will ever go away. At least, it doesn’t paralyze me as it once did, which is good.

My memories fill my days. They also fill my apartment. Once again, I ordered my photo calendar of Ben’s and my favorite Walt Disney World moments. I thought about creating a new 2024 calendar that featured my new memories. I thought I could even combine some of my favorites from the current calendar with photos I have taken over the past several years. Ultimately, I could not do it. It was not really that I felt disloyal to Ben either. It was that I could not stop keeping those memories alive and, basically, keeping our relationship alive. I still use our photo blanket, our photo shower curtain, and a bathroom filled with our Walt Disney World photos. Only recently did I start to really look around my home and what surrounds me. Can I really say that I want to find a new romantic relationship when my old one literally pervades so much of my current life? Would I be attracting love into my life without really being open to it? In the Pixar short, Carl’s Date, I related so strongly to Carl’s insecurity about finding love again. I felt like I was also looking for guidance, connecting to how he still acknowledged Ellie and had the support of Dug when he stepped forward. But he did step forward, and so will I. (Click here for my post about this.)

This year, I have made a great deal of progress with my writing. I have always loved to write, but it was my experiences in caregiving that led me to start this blog and stirred my passion. Ben and my dad, as well as a host of memories, were front and center of my writing endeavors. My book, which is now almost ready for submission, is based on this blog. A couple of years ago, I decided to pursue my long-held dream to write children’s books. After all, as Walt says, “All our dreams can come true if we have the courage to pursue them.” Though Christopher Robin has taught me that I am braver than I believe, I do not consider courage to be my strong suit. Still, I have taken writing courses, joined professional writing groups and learned a lot. I did find the courage to allow a small group of trusted people to read my book and children’s stories. Still, I stop short of seriously taking the next steps. I know that it is fear of success as much as fear of failure. This year, my intention is to walk through that door and see if I can at least get closer to having my fantasy of being published overlap with reality. I do know that all my loved ones believed in me- often much more than I believed in myself. Mufasa tells Simba in The Lion King, “So whenever you feel alone, just remember that those kings will always be there to guide you. And so will I.” Ben, my dad, my mom, my grandma and my aunt Eleanor are a part of so much of who I am and what I do. I will always strive to honor them in my actions. I just need to fully accept and find a way to place them in my heart while acknowledging that they are not here.

My book in progress.

So, 2024 will be the year that I apply some faith, trust and pixie dust to pursue a better balance between past and present that will let me not just open doors, but fully walk through them, knowing that I am on my own but bolstered by so much love.  

I wish everyone a peaceful, curiosity-filled 2024.

Best wishes from Abby and Tinker Bell

Thanksgiving, Gratitude, And What Does It All Mean?

Yesterday was Thanksgiving. Of course, I always take comfort in Disney, so I try to heed the advice of Walt Disney who said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.”  I have really tried to embrace that attitude and, for the most part, it helps me. I also give myself permission to acknowledge the difficult moments and not force myself to deny or spin those moments.

The truth is that Thanksgiving is a bittersweet holiday for me. Yesterday, I awoke teary, thinking about the family I have lost. These were the people to whom I was closest. While I am indeed grateful to be included in the plans of my friends, I cannot escape the feeling of aloneness. Though I have learned to coexist with grief, this is one of those days when I cannot fight the tears.

I think about my last Thanksgiving with my dad, spent in the hospital, where I schlepped a full turkey dinner that he ate, mostly, to make me feel better because I had been crying and pleading with him to eat and get stronger. My last Thanksgiving with Ben was melancholy because he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. Although it was easy to lose sight of it at the time, we did have things for which to be thankful. Being able to feel and express gratitude for each other was indeed a superpower because it gave us perspective to see the love that was there, and even to have some laughs. The love in those memories continues to warm my heart, despite the lingering sadness.

I think of my first Thanksgivings without Ben. It is my good fortune to have friends who included me in their Thanksgiving plans. I love my friends and spending time with them, and I sincerely appreciated the invitations, but the feeling of aloneness hovered. I returned to my apartment from these occasions in tears, weighed down by the unhappiness of not having any close family anymore and not knowing where I really belonged. At this time, my aunt Eleanor’s Alzheimer’s disease had also progressed to a point where I had lost the person I knew and each visit with her was yet another stinging reminder of my loss of family.

After a couple of greatly appreciated but painful Thanksgivings, one year, I decided to ignore the holiday, declining invitations and staying at home. It did not feel good either. But hey, I tried. Even when I have an epic fail as I did that holiday, I always pat myself on the back for striving to reshape my life and address the areas that are especially troubling to me.

This year, I originally planned to travel to London to completely avoid the discomfort of Thanksgiving and immerse myself in one of my favorite places, visiting people I love, too. For a couple of reasons- all positive and optimistic, by the way- I decided to postpone my trip. Still, it left me here with my discomfort. Who knows? I might have felt discomfort in London, too, knowing that I went away because I did not especially want or need to be home. I clearly miss the dependable comfort of family. Maybe, one day I will find it again. Maybe, being in a state of gratitude will help to manifest it. Too much of the touchy-feely laws of attraction stuff? Maybe. Or, maybe not!

As I said, I do have wonderful friends, and yesterday, I spent a lovely Thanksgiving evening with them. Again, I returned home feeling a mix of emotions. I let myself feel the heaviness of grief and missing my loved ones. I also let myself feel content that I did enjoy my time with dear friends. Being honest with my feelings- the positive and the negative- helps me to reflect honestly on gratitude and the spirit of Thanksgiving. I believe that it is in my acceptance of the bad moments, or days, that I began to understand what Walt meant by being in a state of gratitude. I make a practice of acknowledging gratitude, but I do not force myself to suppress my emotions.

In the 1960 Walt Disney Productions film Pollyana, Pollyanna describes the “Glad Game.” This was a game that Pollyana’s father taught her to deal with disappointment, in which you turn every tough situation around and think about something you are glad about regarding that situation. As time has passed, I have learned that being “in a state of gratitude” is not to naively play the Glad Game (click for more). It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the especially important superpower of perspective. I have a good cry when I need to, or when something triggers it, but I also acknowledge and welcome experiences or insights into those tough times that compel gratitude.

For me, I struggle with a lack of confidence, and I want to frame my gratitude list this year in the context of achievements, so I can document and hopefully clearly see growth.

  • I have said it before, but can never say enough, that I am grateful for my friends, who have shown me such kindness, generosity, compassion, and encouragement. I am grateful that I emerged from the darker days of grief to be able to enjoy creating new memories with them.
  • I am grateful for my love of animals, as they are often more intuitive and genuine than humans. And, they completely delight me! Doing animal encounters and interacting with animals gives me such a sense of fulfillment. It connects me to my dad because he also deeply loved animals. I did plan to do a penguin encounter with Ben, but a winter storm made travel in an ambulette and with his wheelchair too daunting. I did feel guilty doing my first penguin encounter without Ben. But, I have learned that I take Ben everywhere with me, and even when that is not enough, it is something. For this, too, I am grateful.
  • I am grateful to be working with Hope Loves Company, facilitating online “hangouts” for kids who have a family member with ALS, leading crafts workshops at the organization’s online camp event, and participating in the development of new endeavors. I am sorry to meet these young people at this devastating time in their lives, but grateful when I can bring them some laughs, maybe some insight, and an opportunity to socialize with other young people who share the experience of ALS in their families.
  • I originally began a club in my school intended for students who are caregivers for ill family members or even helping to raise their siblings. It has shaped up to be a club of caring, and somewhat shy, kids who want to find themselves and support others in school, in the local and global community. I am grateful that my club has worked to raise awareness in our school about student family caregivers and their struggles. We have conducted events for November’s National Caregivers Month. I have also been leading professional development sessions for teachers and staff that focus on addressing the needs of student family caregivers. I am grateful and proud to have made caregiving a part of our school’s dialogue.
  • I am grateful to find comfort in the arts and in my creative endeavors. Blogging has been tremendously helpful, and I am grateful to know that readers find comfort in my words and I am thankful to have connected with many people.
  • I am grateful to have been working diligently on my writing. I take classes and joined writing groups to help hone my skills and learn about the publishing world. I have a caregiving book and picture books in progress. I mustered the confidence to share drafts with beta readers and have gotten positive feedback and constructive criticism. I am hopeful and optimistic about being a published author.
  • I am grateful to Walt Disney and all he created for providing me with entertainment, inspiration, motivation, joy, and opportunities to reflect and sort through my feelings. I am grateful to believe that wishes can come true and that there will one day be a cure for ALS and all devastating and terminal diseases. I am grateful for my sense of whimsy and belief that if you wish and dream enough, your wish will come true. It lets me know that I will have even more to be grateful for next year!

There are and there will likely continue to be setbacks and I remain consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad, mom, and grandma proud. My memories will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. And, I keep reminding myself of what Christopher Robin said to Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know that I will be okay because I have the superpower of gratitude that allows me to embrace all my emotions and seek a balance between positive and negative moments and thoughts.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. I always welcome you to share your own in the comments.

With all good wishes,


Wishing Well at Walt Disney World July 2014