Happy Birthday Daddy and Cinderella! Thank You For The Life Lessons!

Today, February 15, would be my dad’s 90th birthday. It’s a strange and melancholic kind of time, with the anniversary of his passing just two days ago and Valentine’s Day yesterday.  I did go to the theater today, which is always comforting to me, but the sadness loomed. Fortunately, my friend understood my need to talk about him and my awkwardness and mixed emotions. But, there are so many good memories on which I try to dwell during these down days. I was a Daddy’s girl and I was his life and his caregiver. My dad is always in my heart and thoughts, and at this time I would like to take the opportunity to put him front and center and share glimpses of his life. My dad never wanted to make a fuss over his birthday. But, I always did. And he deserved it. My dad taught me so much about life, integrity, generosity and loyalty, as well as the importance of a sense of humor and of being able to laugh at yourself. I strive to make him proud because I know he’s watching over me.

I realized as I was preparing this video, that my dad was not in so many pictures because he was always the one taking the photographs. The background music is From The Hall of Montezuma, the USMC hymn. He would love that. He loved dogs, the USMC and his family.

The camouflage coat was one of our funniest memories because he liked telling people that he wore it when he went outside and tried to hide among the greens from his mother-in-law, my grandmother. I wore my camouflage pants in his honor.

You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!

Who would have thought that my dad and Cinderella and I would have any connection? Well, they do. Cinderella and my dad share a birthday, since the movie Cinderella was released by Walt Disney Productions on this date in 1950, which makes my favorite princess 70 years old today! She has remained dear to my heart since childhood because there is more to Cinderella than what meets the eye. She appears simply sweet and naïve, but she had feistiness and determination, and also a loyalty to her father’s memory to which I can wholly relate. It was very hard for her to lose both of her parents, but she let their lessons and moral compass guide her. That’s something I completely understand.

Cinderella knew the importance of integrity and the power of dreams, and in the end, all of those qualities got her the love of the prince of her dreams and a position of respect! She knew at her core that, despite her stepmother and stepsisters treating her horribly, “They can’t order me to stop dreaming.” There’s a good life lesson. I know that people sometimes think I’m unrealistic because of my Disney love and its connection to wishing and dreaming. On the contrary, as the caregiver for my dad and for Ben, I was hit with harsh realities on a daily basis. Dreaming and wishing were my escape. They encouraged me to find creative ways to solve problems. And, they allowed me to envision a future where my dad and Ben had peace and comfort and I could stand alone and live happily with them in my heart. Now, as I work through grief, dreams help me to redefine myself and reshape my life. No one can tell me that dreams are not valuable and important.

Cinderella,Disney,ALS,Grief,Caregiving

Cinderella, 1950
Walt Disney Productions

Maybe you don’t literally talk to your Fairy Godmother, but I imagine that a lot of readers have had a similar conversation with someone, or with themselves, and questioned their faith that they could handle things or that things would be okay.

During caregiving days, when my dad and/or Ben was struggling, knowing that in the end I was going to lose them, it was easy to lose hope and optimism. In those times, I had to thank goodness for the insight and “Bibbidi-bobbidi-boo” of Cinderella’s Fairy Godmother. For me, the dreams and the wishes got me through very difficult and sad days of terminal illness and caregiving and feeling that nothing I did really mattered. There were no cures, no one was going to get better, and things were becoming more difficult. But, I could dream, and those dreams helped me keep the faith.

There is a song in Cinderella called, So This is Love.  Though the song is about romantic love, the title is significant. When we are watching someone struggle with illness or we are struggling with caregiving responsibilities, we accept these challenges, and embrace them, because this is love. It’s that simple. And, that complicated.

At the heart of the film is the song A Dream is a Wish Your Heart Makes.

A dream is a wish your heart makes
When you’re fast asleep.
In dreams you will lose your heartaches.
Whatever you wish for, you keep.
Have faith in your dreams, and someday
Your rainbow will come smiling through.
No matter how your heart is grieving,
If you keep on believing,
The dreams that you wish will come true.

I’ve always been a dreamer who wished for the fairytale ending. Sometimes I think that it’s a matter of perspective. I do believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me and times like these past few days are quite sad and lonely. I’ve written before that I will wish for and dream about cures for ALS, and also for cancer and the many other horrible diseases. Sometimes it seems futile, but I remember that Cinderella’s Fairy Godmother said, “Even miracles take a little time.”

My dad called me his Private Benjamin, but I was also his Cinderella, and I will always keep his spirit alive and let him guide me.

Happy Birthday, Daddy! I love and miss you!

Valentine’s Day Traditions Bring Tears and Healing

The last Valentine I made for Ben, in 2015.

I always loved Valentine’s Day. I have hand-made Valentine cards for as long as I can remember. My great-aunts and great-uncles, and of course my parents, aunt and grandma, saved all of them. As they’ve passed on, their collections of the cards I made for them made their way back to me so I would know that they were kept and treasured. Ben had his own collection, which I now revisit from time to time and on days like this. I see them as testaments to the love we all had for each other. But, I miss all of these people.

Now, Valentine’s Day is bittersweet but I still love the whole idea of Valentine’s Day. As I posted yesterday (click here for that post), my dad passed away the day before Valentine’s Day in 2014. I spent Valentine’s Day that year making his funeral arrangements. My dad’s birthday is the day after Valentine’s Day.

With Ben, our Valentine’s Day celebrations were often sweet and simple. He always knew that after I put him to bed, I would make a card and decorate the apartment, and he looked forward to his Valentine’s Day surprise. It added some whimsy to his homebound life.

I also remember the simple and sweet Valentine’s Days spent with Ben where we danced in the living room. Ben thought that he had to take me to a fancy restaurant, but he learned that I really preferred cozy celebrations at home. Dancing was an important part of our relationship and I miss that, too. I was unexpectedly reminded of those days today during class. I was showing my class the film Under The Same Moon. It’s a Spanish film which touches on vocabulary the students have learned as well as issues of immigration. It’s a beautiful little film and the students always love it. I forgot about a scene where two people dance and start to fall in love. It immediately took me back to my living room, where Ben and I always danced and I tried to learn how to dance a little bit of salsa. I thought about the song One Dance (click here to read about it) and how much it meant when Ben was in the hospital. I felt the tears coming and did not want to cry in class. At least the lights were off! I busied myself at my desk to avoid the scene- I’ve seen the film so many times I know many of the lines! Unfortunately, I was shaken for the rest of the day. I tried to cheer myself up by making my traditional rounds in class and the hallways with chocolate for my current and former students, as well as those I didn’t know and for my colleagues. Valentine’s Day is and should be a happy day of building community in the school and I love that. Still, I was emotional and on shaky ground. It’s those unanticipated jolts of grief that are the most unnerving.

Another Valentine’s Day tradition that I maintain is to visit my aunt Eleanor, who has Alzheimer’s Disease and is in a nursing home. She has declined to the point of being non-responsive and I was nervous about how the visit would go. When I arrived, she stared at me, but almost through me, without recognition or reaction. At a few points, she seemed to understand what I said, but she is nonverbal. She has no real quality of life anymore. It’s devastating to see. I sat quietly beside her for a while, placed the Valentine card with Tinker Bell’s picture and kissed her good bye. It broke my heart. I realize that I have been grieving the loss of our relationship for quite some time.

My aunt Eleanor with the only dog she ever loved, our Standard Schnauzer, Dulcie.

Despite the sadness of today, Valentine’s Day seems an appropriate day to spotlight with love these people whom I miss and treasured so much.

(L-R) Great-uncle Louie, Great-aunt “Tanta” Rosie, Great-Aunt Lillian, Grandma Dora, Great-Uncle Larry. Mid-1980s. I adored them all.

My mom and our Standard Schnauzer, Dulcie. Miss them both!

My dad, in one of his favorite photos, with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker.

(L-R) Great-Uncle Davis, cousin Garry, who, at age 94, passed away just one month before Ben), and Great-Aunt “Tanta” Rosie.

ALS,Caregiving,Grief,Walt Disney World, Disney

My silly Ben with his buddy, Buzz.

Life has changed without all of these people, and although I lost many people that I loved and who loved me so much, I am fortunate and grateful to have had them in my life. I am also grateful to still be surrounded by much love. Crafts projects give me peace and inspiration, and I realized how important making Valentine cards was to me once I lost those closest to me. It was a way of showing and feeling so much love. For my older relatives, my cards were the only fun mail they received and I was the person of my generation who always reached out to them. I decided to continue to tap my inner child with my card-making tradition, giving them to special people in my life.

The holiday is different now, and, honestly, not as happy, but it does give me joy to show my love and appreciation for special people, in my craftsy way, and to share a special tradition that keeps Ben, my parents, grandma and great-aunts and great-uncles close. And, who knows? Cinderella’s Fairy Godmother said, “Even miracles take a little time,” so maybe a romantic Valentine’s Day will again happen for me.

I wish everyone a Happy Valentine’s Day filled with love and friendship, and a sprinkling of pixie dust!

Tinker Bell’s first Valentine card! Each card is a little different.

Six Years Missing My Dad

Today marks 6 years since my dad, Jacob, left this world. People might think this strange, but I still think about him every single day, remembering his humor, his advice, his kindness and his history lessons. I think about how upset he would be about the state of our country and its leadership, or lack thereof. He was a proud Marine, and a real patriot. He also loved history, particularly WW2, and he would definitely be reminding me that history does indeed repeat itself. As much as I miss him, I am relieved that he is not aggravating himself. There are so many times that I want to call my dad, to share a story, ask for his advice, hear him laugh. I still talk to him. Somehow, I know that he hears me, because sometimes he guides me to the answers.

February is probably my least favorite month because it is filled with lousy anniversaries. In particular, this is a difficult week because my dad died just two days before his birthday. I can’t help but relive the time he spent at the hospital and at the VA Hospice. I spent every day with him in the hospital and then commuted out to Long Island to visit him every day at the VA Hospice. It still bothers me that there was a terrible storm the day he died and all means of transportation were stopped so I could not get to him on that day. The nurse did put the phone to his ear, and although he was no conscious, I know that he heard me tell him that I loved him, that he was the best father and that it was okay if he was ready to go. I remember people from the staff telling me that I was my dad’s world. I did know that, and I am grateful that we took every opportunity to let each other know how much we loved each other way before he became ill. There were no things left unsaid. I am grateful to have had such a close relationship with him. I suppose the sharp pangs of grief and waves of sadness that permeate these days are testament to the love we had for each other. I like to think about it that way.

Added to this year’s sadness is that I lost my sweet cat, Disney, just one year ago, on February 7. I remember talking to her veterinarian, when it became clear that it was time for her to go and join Ben and my dad, that it might as well happen in February since it was already a terribly emotional month.

On the night that he died, I wrote notes about my relationship with my dad for the Rabbi to present at his funeral. It has become my tradition to revisit those notes on this date and I like to share them to let people know a little bit about him. Daddy would have said that 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.”

So hard to get him to pose seriously!

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.

I wore my camouflage pants today, along with a chain that he always wore. I miss and love you, Daddy. Semper Fi.

Happy Anniversary, Peter Pan! On Caregiving, Grief and Thinking Happy Thoughts

ALS,Caregiving,Grief,Walt Disney World

Ben and I with Peter Pan and Wendy
Walt Disney World 2006
Before ALS

Peter Pan was originally released on February 5, 1953.  Ben and I loved the film. What adult has not chuckled at how they spent their childhoods waiting to grow up just to wish that they had stayed children?  I am a firm believer in embracing my inner child. Ben also loved to tap his inner child. Walt Disney World is a place where it is a requirement! Maybe that’s why Ben and I loved it so much!

 

February is a difficult month for me. My dad’s birthday and date of his death, Ben’s birthday, the anniversary of my grandma’s death. In two days I will mark the first anniversary of the loss of my sweet cat, Disney. A lot of milestones within a short period of time. Think happy thoughts. It’s not always easy when I’m feeling down, but it’s also important and helpful for me to remember the good times, even if it makes me cry. Thank you, Peter Pan, for that good advice.

 

 Think happy thoughts took on a whole new meaning when Ben was struggling with ALS and I was struggling with caregiving. ALS is known to be a very isolating disease. I’m sure that even when he was not literally alone, Ben felt isolated. I felt so helpless when Ben hurt because sometimes, it was so hard to speak to explain himself and be understood, that he just shook his head and stopped trying. Also, with every day came the dread of what ability he would lose. Sometimes he simply had a bad day and other times there was an obvious change in his health. There were days when I was able to care for him without any problems, but then there were the days when it was exhausting and overwhelming, and if I was having back issues, it was physically painful. We cannot walk in the shoes of our loved ones, we can only love them. Love is a lot. Thinking happy thoughts is a lot, too, because, along with love, it lets us remember who we were and what was important before illness changed things. When facing a terminal disease, the unhappy thoughts come easily. The happy thoughts seem surreal, and yet, they let us escape and remember. For us, happy thoughts almost always included memories of our visits to Walt Disney World. Ben spent so much time every day looking at the videos and photos from our visits to Walt Disney World. We loved to listen to the music from the parks, too. He went on their vacation planning web site to plan fantasy trips. I liked to see him planning because I felt it kept his head in living and focusing on what he could do. I truly believe it helped him manage the disease pretty well for about four years.

 

On those very difficult days when eating was a challenge, or there was a fall, or some other accident, or even just a lack of energy to transfer or be transferred, we had to remember, “All you need is faith, trust and a little pixie dust!” So much happens with illnesses and caregiving that is unpredictable and beyond our control. For me to maintain a certain state of calm that allowed me to be a problem solver, I needed to have faith and trust that things would ultimately be okay. The pixie dust was the whimsy that always let my inner child thrive in the midst of very grown-up, complex circumstances. Sometimes it was just a loving moment between Ben and me that would make us laugh. Sometimes it came from friends, sometimes it came from caring strangers, and sometimes it came from both of us taking a moment to remember the good and loving times. And, with faith, trust and pixie dust, we even made it back to Walt Disney World four times during his illness.

I named my blog Pixie Dust For Caregivers because quotes like these, as well as many Disney characters, films, lyrics and attractions from the Parks were the pixie dust that gave me perspective, inspiration, and comfort during the caregiving years and as I have been working through grief and rebuilding my life. They helped Ben, too. At times, they simply gave us much needed entertainment.

 

We did love the Peter Pan attraction at Walt Disney World. We loved to soar over Neverland on the pirate ship. Unfortunately, it is not accessible and has to be boarded while it is in motion. Ben had trouble with balance and walking early on, so it was the first ride we had to give up. Still, we never lost our love for Peter Pan and Tinker Bell. This past October, I went on the ride for the first time in more than six years. It will never be the same. I did not feel the same joy, but I also felt proud of myself for pushing myself to allow myself to step back into the experience.

Like any child, Peter Pan saw things very simplistically A couple of his comments gave me pause, but also helped me to reflect. A line in the song “You Can Fly,” is, “Think of all the joy you’ll find when you leave the world behind and bid your cares goodbye.”  I understand Peter Pan’s enthusiasm for Never Never Land. But, I couldn’t help hearing that quote and thinking that there was no joy or optimism in Ben dying. On the other hand, I wanted Ben to have peace and to feel comfort he had not felt in the nearly six years he bravely battled ALS. Tragically, ALS was not going away. He was not going to get better. He was miserable after he got his tracheostomy and feeding tube, and he made the decision to be removed from the ventilator. He was ready to leave the world. I am still glad that he was able to make that decision for himself. My own emotions were all over the place- devastation that I was going to lose him in just a few days, along with relief that he would indeed, leave his cares behind and be free from the physical and emotional pain and constraints of the disease that rendered him unable to breathe on his own, speak, eat or walk.

 

Peter Pan also said, “To die would be an awfully big adventure.” I don’t know that Ben would have called ALS an adventure, but it was a journey. Indeed, it was a very difficult journey that he navigated with much bravery. Now, I put faith, trust and pixie dust in the belief that Ben has “bid his cares goodbye” and he is in a peaceful place where he can walk and run and eat and talk and sing and use his hands to use the computer and play his instruments. That gives me peace.

 

I guess it’s my turn to think happy thoughts and have faith and trust that pixie dust will sprinkle good things on my future. It has certainly brought me a lot of love and good memories.

“All you need is faith, trust and pixie dust!”

Sleeping Beauty and Lessons in Caregiving From The Fairies

Today marks the anniversary of the 1959 release of Walt Disney Productions’ Sleeping Beauty.

With the upcoming anniversary in mind, I watched the film last weekend. I have to admit that my favorite characters are the three fairies. In fact, after my cat Disney passed away and a new, small young cat and I adopted each other, I thought about naming her Merryweather, but it just didn’t flow off the tongue. Instead, I named her for another feisty fairy- Tinker Bell!

There is a scene when the fairies brainstorm ways to counteract the curse that Maleficent has placed on Princess Aurora. While Merryweather has the idea of turning Maleficent into “a fat old pop-toad,” Flora reminds her that their magic can only do good to bring joy and happiness.

Fauna believes that Maleficent probably isn’t very happy because she doesn’t know anything about love, or kindness or the joy of helping others. In the story, the three fairies decide to give up their magic and their identities and move to a secluded area in the forest to take care of Aurora until her eighteenth birthday, to keep her safe from Maleficent’s spell. Their entire lives turn upside down. They put Aurora’s needs before their own. That’s a scenario that is familiar to many caregivers. I watched this movie often while Ben’s ALS was progressing but I don’t think I saw the connection at that time. I think that I was too entrenched in the difficulties and what I thought I was doing wrong to see that the love and care in caregiving were always coming through and were nurturing Ben and me.

In my own story, when Ben was diagnosed with ALS, although he lived in denial about its progression, we went crisis to crisis and began shifting things in the apartment as necessary. I had to take many days off from work to help him or just to provide emotional support if he was having an anxiety attack. There were a couple of times that I thought my job was on the line until my principal helped me to arrange for family medical leave. I was tired and stressed, but that was not a priority. There was sometimes tension between Ben and me because I was having a difficult time juggling full-time work with full-time caregiving and Ben would not admit that it was difficult and that he needed more care than I alone could provide.

When the fairies were scrambling to make Aurora a beautiful birthday cake and dress without the use of magic, I thought of the many times that I would experiment with foods and the Vitamix, or help Ben to devise some kind of contraption to help with his lack of dexterity. The fairies wanted to surprise Aurora with a party, finding ways to get her out of the house so they could decorate. I thought of the many nights that I waited until after I had put Ben in bed to decorate the apartment for holidays or Ben’s birthday, so he would awaken to a surprise. I lacked the wand, but like any caregiver, I had to create a kind of magic to make life easier and entertaining. Only in retrospect can I see how it may have exhausted me, but it also fueled me.

We all have to deal with our Maleficents. These were the unreliable family members or even the completely unhelpful but judgmental health care professionals. Like Merryweather, I had some spirited fantasies, but they were more along the lines of banishing them from our kingdom! Alas, I, too, had to focus on the caregiving and vent to my friends the way Merryweather vented or fantasized aloud to Flora and Fauna.

Taken at Walt Disney World in 2002, the pre-ALS days.

As I look back at my caregiving days, I realize that although it was the most difficult work I ever did, it was the most important and loving work, too. The fairies were entrusted with Aurora’s life and they did whatever they had to do to protect and care for her. I was not as selfless as the fairies-  there were times that it made me angry and resentful to have to juggle so much, especially when Ben was not acknowledging that his ALS was progressing and I was losing my ability to “just keep swimming.” At the same time, I also would not have had it any other way. Ben knew that about me and I knew that about myself. Caregiving let me see that I found the most satisfaction and joy in showing love and kindness while helping Ben and my dad.  It wasn’t a matter of feeling happy all the time. In fact, I was not happy to Ben – and my dad- decline and to see our lives and future disappear. However, I felt purposeful and proud that I was the person they knew they could count on to always be there for them.  I realize now that I had the most true sense of myself when I was caring for and bringing joy to them. Although those days are behind me, I often reflect on them, and looking back through the lens of Flora, Fauna and Merryweather remind me of the valuable life and love lessons of caregiving.

Another favorite part of Sleeping Beauty is when Aurora tells her forest friends about the prince she sees in her dreams. She says, “If you dream a thing more than once, it’s sure to come true.” So, I will keep wishing and dreaming and feeling the pixie dust for cures for ALS and all awful illnesses, and for love and all good things. I hope you do, too, and I hope your wishes and dreams come true.

Thank you, Flora, Fauna and Merryweather, and Happy Anniversary, Sleeping Beauty.

Walt Disney World, July 2014