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Happy Birthday, Daddy! And Cinderella!

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Today, February 15, would be my dad’s 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.  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. I wrote more about him a couple of days ago, on the third anniversary of his passing. Click here to read that post. 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, we always did. And he deserved it.

I realized as I was preparing this video last year for his birthday 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 you will see was an homage to the USMC, and 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 had to include it in the slide show.

Who would have thought that my dad and Cinderella and I would have any connection? Well, we do. Cinderella and my dad share a birthday, since the movie Cinderella was released by Walt Disney Productions on this date in 1950. Cinderella was my favorite princess when I was a child. She remains dear to my heart 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 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!

How Valentine’s Day Hurts But Also Helps Me Heal

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The last Valentine I made for Ben, in 2015.

I have 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. I see them as testaments to the love we all had for each other. But, I miss all of these people.

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. I remember the simple and sweet Valentine’s Days spent with Ben where we danced in the living room. Dancing was an important part of our relationship and I miss that, too. 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. There is a melancholy that pervades these days.

As first Valentine’s Day without Ben approached, I realized that all of the people for whom I made my cards were gone, except for my aunt Eleanor, who is in a nursing home with Alzheimer’s Disease. She doesn’t remember the cards, though she seems to like to hold them when I show them to her, but the relationship we had is also gone. The loss of my little but loving routine of making Valentine cards magnified the void created by the loss of my loved ones. Here they are:

(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.

There are some things that I cannot yet do or enjoy since I’ve lost my parents and Ben. But, Valentine’s Day is a time of love, 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, so I continue to tap my inner child with my card-making tradition, with Disney as the star. The holiday is different now, and not as happy, but it does give me joy to show my love and appreciation, in my craftsy way, and to share a special memory that keeps Ben, my parents, grandma and great-aunts and great-uncles close.

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

One of this year’s cards. Each card is different.

 

Remembering my Dad- Four Years

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Today marks 4 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.

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 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.

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.

I wrote notes about my relationship with my dad for the Rabbi to present at his funeral. I thought that on this day I would share them to let people know a little bit about him. He 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.”

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.

It’s A Small World After All

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ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, It's a Small World

2011- It’s a Small World allows a wheelchair to board the boat, and since that was so easy (and, ok, there are not long lines) we road it frequently! YAY!

For musical accompaniment while you read this post, click below to hear the song!

It’s a Small World
Lyrics and music by Richard M. and Robert B. Sherman

It’s a world of laughter,
A world of tears.
It’s a world of hopes,
And a world of fears.
There’s so much that we share,
That it’s time we’re aware,
It’s a small world after all.

Chorus:
It’s a small world after all.
It’s a small world after all.
It’s a small world after all.
It’s a small, small world.

There is just one moon,
And one golden sun.
And a smile means,
Friendship to every one.
Though the mountains divide,
And the oceans are wide,
It’s a small world after all.

Chorus:
It’s a small world after all.
It’s a small world after all.
It’s a small world after all.
It’s a small, small world

It’s a Small World is one of my favorite songs, and the ring-tone and ring-back tone on my phone, either to the delight or dismay of people who call me. It is also my favorite attraction at Walt Disney World, and was one of Ben’s, too, and he loved that after his diagnosis, he could easily ride right onto the boat with his scooter and electric wheelchair. I do not like to get political in this blog, but I can’t help but think about how timely this song is and wish that we had more politicians who promoted this kind of unity. But, this is a blog about caregiving.  As a former caregiver, and now a participant in support groups for caregivers and family members of people with ALS, I see so much judgment and the hurt it causes- from caregivers, carees, family, friends and others. Although we all wish we could dismiss the opinions of others, nobody likes to feel judged, particularly when we are already vulnerable and those judgments make us feel inept. It’s so important to remember, and sometimes to look for, the things that we share, even if we take action in different ways. Also, while we debate the efforts that we make, a simple smile is a universal act of kindness that can make a tremendous difference in our lives.

Yesterday, I was reminded of how important it is to have compassion and to be considerate, rather than judgmental, of what people are experiencing. We never know exactly what is going on in someone else’s life or how much we might have in common with a stranger.

I was waiting outside a movie theater to meet a friend, when a woman came up to me to ask for directions. I directed her back down to where she was walking from and she got very upset, saying that she had just been told to come up the block from that direction. I pointed to the street signs- Manhattan is a grid in most parts-  and showed her the precise street she was looking for, which was literally one block away. She showed me the exact address she needed to find, and I confirmed my directions and told her what the cross streets would be, hoping to comfort her by explaining that I lived just below it in the same range of numbers. She was inconsolable. She told me that she was going to her friend’s apartment and was trying to call her, but her friend would only text and would not answer her phone.  The woman appeared to be a New Yorker, but I could see that for whatever reason, she was distraught and seemed almost disoriented. I offered to walk her to the block and that seemed to appease her. When we got to the corner, she got upset again, saying that it was the block that she came from. She tried to call her friend again and got no answer. I didn’t understand why she didn’t text her friend but did not ask questions. Since she was so upset, I offered to walk up the block and see if I could spot the building. I quickly found the building, walked back to the corner where she waited for me, and escorted her to the building.

As we walked towards the building, she apologized for walking so slowly, saying that she had a lot of health issues. I smiled and said it was no problem and told her that my husband had ALS and I walked slowly with her, remembering how I made those accommodations for Ben, then walked beside his scooter, then his electric wheelchair, sometimes having to help him steer that vehicle. She confided that she had Parkinson’s and I applauded how well she was managing despite her worry. We smiled and wished each other a good day and she calmly went into the building.

I walked back to the theater thinking about how at first glance, she just seemed unnecessarily frantic and somewhat unreasonable. Once I understood the context of her panic, I saw that she was probably terribly concerned about walking back and forth, and maybe uncomfortable, tired, and unsteady. But, it really didn’t matter if I understood. What mattered is that I could easily lend a hand and relieve a stranger’s stress.  I then wondered how her friend could be so thoughtless to insist on her texting when, with Parkinson’s, she may have found that a difficult task, especially in the severely cold weather. It seemed at the very least, terribly inconsiderate. But, I tried not to judge because I didn’t know either of them or the depth of their friendship. Perhaps her friend knew little about her illness. In this case, it would be appropriate, and responsible, to ask how best to accommodate someone. The trick is to do it without making the person feel like a burden or to call great attention to their needs. In the case of someone who is reluctant, or too proud, to ask for or accept help, it can be useful to arrange to be  conveniently nearby.

I have written quite a bit, even recently, about judgments that people made about Ben based on his speech or being in a scooter as opposed to an electric wheelchair (he did eventually need one). As caregivers, we know our carees, and, even at that, sometimes we have to listen to them even though we have our own opinions of how to handle various situations. I was fortunate that Ben never lost his ability to communicate, even though it became more difficult to understand him. He knew himself and his body very well. That’s not always the case, and when it isn’t, there is frustration on the part of everyone involved. But, a smile and acknowledgment that we all matter can do wonders to help relieve stress and foster communication and cooperation.

I believe that we know that Eeyore is right that, “A little consideration, a little thought for others, makes all the difference.” Ben and my dad always appreciated expressions of consideration and kindness. Likewise, it meant the world to me to know that they appreciated my efforts on their behalf. Sometimes it could only be expressed with a smile and a squeeze of the hand, but that spoke volumes, especially after bouts of impatience and disagreement and, believe me, those did happen!

We all have our routines, our world views, our opinions. We run across so many strangers in our lives. We have no idea what’s going on in their lives. Even when we do, we are not part of the dynamics of other people’s relationships. People who knew me thought that I should handle things differently and got frustrated and concerned about what they thought was my inaction but was sometimes an emotional paralysis. I’m sure that there were occasions when I was frantic and people thought I was unnecessarily high strung. Strangers didn’t know that I was the caregiver of a man with ALS at the same time that I was helping my dad who had cancer. They did not know that I was in tears as I rushed past them because I was scrambling to make a train to avert a crisis. Undoubtedly, some of these strangers had their own stressful situations. In those moments when there is the inclination to judge and offer an uninformed opinion, or lose patience, please remember what Eeyore said, and also that “There’s so much that we share that it’s time we’re aware, it’s a small world after all.”

To all who now cannot get that tune out of their heads, I apologize- well, sort of. After all, it is my favorite song! These are a couple of favorite pictures from the attraction.

Love these girls!

 

We never passed these girls without shouting “ooo la la” along with them!

 

Some of you may feel like this right now. The sign was on the attraction one year but we never saw it again.

 

July 2014- we never really mastered “the selfie.”

 

Pooh and Piglet, Ben and Abby, Best Friends, Best Memories

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Walt Disney World, 2012

Yesterday, I received an email from a friend who was doing a crossword puzzle. He wanted to know who was Pooh’s 6-letter friend. I wrote back that it could be Piglet, Tigger or Eeyore, but Piglet was Pooh’s best friend.  Sure enough, the correct response was Piglet. I didn’t expect the day to be filled with memories that were conjured by that simple email.

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 3 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 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 he could calm me down with his great hugs. He was also a big kid at heart, and he 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.

Because of that incident, Pooh and his friends had a particularly special place in our hearts. At Walt Disney World, we always ate at the Crystal Palace buffet, so we could see them. After Ben’s ALS had progressed a bit, I got him settled at our table and then got a plate of food for him. There was one time that Pooh came by our table when I was at the buffet. When I returned, Ben told me that I’d missed Pooh but that he told him that I was going to be disappointed that I missed him. Ben was concerned that Pooh might not have understood him, since his speech was impaired and the costume would make it even harder to hear him (Yes, we did know it was really an actor in a costume, but when we were at Walt Disney World, we completely dove into the fantasy)  A few moments later, I looked up and Pooh was literally running towards our table. He pointed to Ben and then tapped his own forehead, letting me know that he remembered to come back (I speak fluent Disney). Pooh gave me a big hug and we posed for photos. Ben was absolutely thrilled. In fact, making that happen for me was monumental for Ben because, at this point, Ben needed a lot of assistance, and that was difficult for him on a lot of levels: It was not easy for him to be so vulnerable, he was self-conscious, he liked to take care of me and he felt like he could not do that anymore, and there was always a looming worry of what was going to happen next. In this moment, Ben was the hero- he brought Pooh to me! This remains a most treasured memory.

Walt Disney World, 2012

The memories are important. They are everywhere. People might find it odd that so much that I have and do is tied to Ben, and that I continue to regularly share these memories and talk about him. Am I dwelling in the past? Am I keeping myself in a relationship that is no longer here?

There are times when I find that I do want to retreat into the comfort of my memories with Ben. There is also a feeling that I want and need to keep Ben in people’s hearts. I still have a relationship with Ben, though, of course, it is changed. He now resides in my heart and guides me. The fact that we had a perfectly imperfect relationship makes me want to find love again and to create new special memories, though it is also hard to imagine.

Walt Disney World, 2002
The pre-ALS days.

Grief is predictably unpredictable, and I do measure my reactions to these kinds of occurrences.  Am I doing better? Am I handling the grief differently? Better? It’s a day by day co-existence. Yesterday, I found that although the email from my friend made me stumble at first because I immediately thought about how much I miss Ben, I found myself smiling throughout the day as our sweet Pooh memories popped into my head. That was a good feeling. I know and am comforted that Ben is still with me, and that our time together- the good times and the ALS times- has helped to shape me. I struggle with the reminders that our time was cut short and there will be no new memories with Ben. I do feel like I am becoming more accepting of and comforted by knowing that he is with me in my heart, so he will be present in my future.

Walt Disney World, 2011

 

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