Grandma- Always In My Heart

If you’ve followed my recent posts, you know that February is a difficult month for me, with several anniversaries. My dad’s birthday was February 15 and day he died was February 13. Ben’s birthday was just two days ago. And now, today, February 23, is the day my Grandma, Dora, died. Since her birthday is coming up, and things have been rough with these milestones, I want to respectfully acknowledge this date and my love for my grandmother, but I will wait until March 5, her birthday – at least a happier date – to share more about her.

I grew up in a house with Grandma. I was with her in that house when she succumbed to cancer. We were extremely close, knew the best and worst of each other and loved each other unconditionally.

Grandma is a part of so many memories, and of much of who I am, and for that I am grateful. I know that she watched over me as I made humentashen on Ben’s birthday. She was with me yesterday, when I went to the Downton Abbey Exhibition, and I thought about how much she and I would have enjoyed being in the kitchen with Mrs. Patmore. I also thought of Grandma as I looked at the beautiful costumes. Grandma always had a fabulous sense of style and I got my love of fashion from her. I have many old photos of Grandma and my great-aunts and great-uncles from the Downton Abbey era.

I am thinking of you today, Grandma. You are always in my heart and I love you and miss you.

To My Mickey On His Birthday

Today, February 21, is Ben’s birthday. I woke up feeling so down that I didn’t want to get out of bed. This is the third birthday without him, so I asked myself how many of his birthdays I am going to feel like this. The truth is that I have gotten used to the waves of sadness and loneliness. I didn’t know how I would feel today but I go with the flow of my emotions. I don’t convince myself that I have to be miserable, I don’t punish myself, and I don’t anticipate anything other than that I don’t know how I am going to feel and that I will be okay with whatever mood hits. The sadness and loneliness don’t paralyze me the way they did, but the bursts of tears remain.

I miss Ben and I think that’s okay. I miss making a fuss on his birthday. When he was homebound, I decorated our apartment after I put him to bed so he would have a fun surprise in the morning. He knew I was decorating but never knew exactly what he would find, and that delighted him.

In an effort to continue to make a fuss over Ben, I made a plan for today to honor him and our relationship. Making a plan was a way to prepare for the day, too. Since next week is the Jewish holiday, Purim, I decided to bake humentashen, the triangle-shaped, fruit-filled cookies. I knew Ben would like that. He loved them and was very good at shaping the cookies! Ben actually enjoyed a lot of Jewish holidays and traditions- often more than I did! He got a kick out of helping me, particularly because I used to tell him that he was better at it than my mom, who could not make that shape no matter how hard she tried. It always made me laugh to see my big, Puerto Rican man delicately making the humentashen! Grandma would have been proud of him!

Ben and Grandma would be proud of this batch of humentashen.

I am also in the midst of a Disney movie marathon of Ben’s favorites- Monsters, Inc., Mulan, Toy Story (1,2,3) and The Incredibles. It’s a quiet day filled with lots of memories.

I also looked at the video that I made last year on his birthday, which I’ve placed here once again. There are photos of his birthdays and other happy occasions, and, of course, some Walt Disney World photos. Some were taken when he had ALS and some in the pre-ALS days. The love was always there, so I embrace all of the memories. I guess it will always be jarring but sweet to hear The Beatles’, “Happy Birthday.” Ben woke me up with that song every year on my birthday. Now, I am playing it for him. I find it comforting to revisit beautiful memories. That doesn’t mean that it doesn’t come with tears, but tears are okay. So are smiles.

I want anyone reading this to know that, at least in my opinion, there is no “right” way to deal with events like this. If I had felt like I did not want to do anything special for Ben’s birthday, and just share a quiet thought of him, that would have been fine, too. I feel no compulsion to defend myself. That, in itself, feels like progress! Although I made this plan for today, I didn’t know if it would be right for me until I was in the moment. It began shakily, but I did get myself out of bed to accomplish my goals. Thankfully, though having a “Ben day” alone with my memories and baking did not make me happy, it still felt right, and that gave me a feeling of contentment. And, Ben (and Grandma) would be thrilled that the humentashen came out very well!

As I wrote last year, there is no candle on a cake now, but always wishes that he is comfortable, and running, singing and eating to his heart’s delight. And, wishes for a cure for ALS, because wishes do come true.  As Cinderella’s Fairy Godmother says, “even miracles take a little time.”

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

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

When Ben proposed to me at Walt Disney World, he asked me to be His Minnie. So, on his birthday, I say

Happy Birthday, My Mickey!

With much love and pixie dust,

Your Minnie

2011- The first time we went to Fantasmic!

Happy Birthday, Daddy! And Cinderella!

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

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

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.