Disney

Grandma’s Love Is Always There

Grief,Grandmother,Moana,Gramma Tala,Walt Disney Pictures

You don’t see a lot of emphasis on grandma love in Disney films. Julie Andrews as a grandma and a Queen in The Princess Diaries was a treat, as well as outstanding casting, in my opinion. Given my own love for my grandmother, the love between Moana and her Gramma Tala really touched my heart.

Grandma and I around 1990

Gramma Tala understood Moana in a way that only a grandmother can. She provided insight, advice and guidance, as well as perspective and grounding in family.  She understood Moana for who she was and for who she could be. For me, their relationship was probably the most meaningful part of the film, and the quote, “There’s nowhere you could go that I won’t be with you” has stayed with me. I, too, shared a uniquely special relationship with my Grandma. Last week was 20 years since she left this world, and I related to Moana’s pain as she had to let go of her Gramma.

My grandmother loved being called Grandma, and said it was the greatest honor to be a grandmother. So, throughout this post I will simply call her Grandma.

I grew up in a house with Grandma, in the same house that she raised my mom and her siblings. There were a lot of memories in that house, a lot of dreams, a lot of happiness, but also sadness. I grew up in that house but my mom and Grandma died in that house. Grandma and I were very attentive to each other, always calling each other and spending many weekends together. When she was ill I helped with her caregiving, and although I was not her primary caregiver, I was the one she relied on for comfort. At the same time, she wanted to protect me from the fact that she was dying.

From the time I was a child, I was in awe of Grandma and her elegance. I loved her sense of fashion. She had a wonderful way of putting together colors and fabrics and styles. I still have some of her clothing and jewelry. The best shopping I ever did was in her closets and drawers. When I’m feeling lazy about dressing up or putting on make-up- it happens rarely, but it happens!- I hear her warning me that I never know who I am going to meet and I should always look my best. Clearly, she was hoping for a nice, Jewish Prince Charming. My fairytale was not quite exactly her idea of the “tale as old as time,” but Grandma always seemed to understand that I danced to my own beat. Sometimes we frustrated each other, particularly when I challenged her ideas of an ideal life.  But, we had a special bond and an unconditional love for each other.

Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.

Grandma had four brothers and a sister, my great-aunts and great-uncles, and I loved them all dearly. If you read my Valentine’s Day post, these are the wonderful people for whom I made cards when I was growing up. I accompanied my mom and Grandma to visit my great-grandmother at the nearby nursing home almost every day when I was quite young. As a child, it was a fun experience for me because, as I realized in retrospect, the people living there were so happy to see and interact with a child. I loved spending time with my great-aunts and great-uncles. Losing Grandma and my older relatives left a huge void in my life. However, through our loving relationships, I developed an appreciation of and particular compassion for elderly people that I have to this day.

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

Grandma was very artistic and I inherited her abilities and passion for crafts. She crocheted many aphgans and sweaters, skirts, dresses and ponchos. I remember choosing wool colors with her and how each item had to represent the gift recipient, yet had to be timeless and classic. I can see my own shifting tastes as I look at my childhood aphgan in its pastel colors and then the gray, maroon and cream colors in my college aphgan. I remember waking up in the morning covered with the squares she made while I was asleep.  My dollhouse and dolls even got aphgans! I still have many things that she made. They hold such beautiful memories of time spent watching her and learning how to crochet. Eventually, she helped me to make an aphgan of my own. Ben used it often.

Some of Grandma’s aphgans. Far left was from my bedroom, the middle was for college and far right was another design she made for another room. When I woke up, I would often find little aphgans in my dollhouse! I’ve kept them, too.

The aphgan I made with help from Grandma.

Grandma was also a craftsy child, and I remembering discovering and being fascinated by a beautiful ribbon doll that she made when she was young. My mom had it restored and framed, and it hangs in my apartment, another reminder of the artistic sensibility that I share with Grandma. Grandma’s talents extended to the piano, and she inspired me to learn how to play. I never played as well as she did, but she helped and encouraged me to play, and I’ve kept some of the sheet music.

A ribbon doll that Grandma made as a child. I believe that these were popular crafts when she was young.

My mom, on the other hand, was not artistic. Grandma did my hair, helped me pick my clothes and taught me how to bake. I never saw Mommy approach the piano, though she did take guitar lessons with me for a very short time. But, as I’ve written previously, my mom and I shared a sense of whimsy and we were both children at heart. Grandma did not share that sensibility and it made for some amusing times. One of my funniest memories was watching “The Little Mermaid” with both of them, my mom and I giggling like little girls, and then laughing hard as we looked at Grandma, who was staring at the screen in disbelief that we could lose ourselves in the film. OK, so Grandma did not embrace the Disney magic, but she did have a healthy respect for Mickey and Minnie and was amused and enthusiastic when I called her from Walt Disney World to tell her that I’d gotten a Happy 35th Birthday hug from Mickey!

One of our traditions was to make humentashen, the triangular, fruit-filled cookies made during the Jewish holiday, Purim. When I was a child, she taught me my Bubbe’s (great-grandma’s) recipe, and we made the cookies every year. And every year, Grandma admonished my mom, who laughed as she struggled to make the triangle shape and never got it quite right. Family traditions! As Grandma got older, I did more of the work and she supervised. After she died, I continued the tradition, and I even taught Ben how to make them. He loved doing it, and got a kick out of knowing that he, a Puerto Rican, was better at making humentashen than my mom!  Every year, he would look up the date of Purim so he could tell me when we had to bake! And, just like Grandma did, we counted how many of each flavor I had. (Counting was a ritual she started as a joke because my dad used to sneak into the kitchen to take the matzah balls she made. ) As Ben’s ALS progressed, he made less and less, but he was always a part of the process, even as the official batter taster.  Grandma never knew Ben, but I believe that she watched over us and that she would have loved him. I kept and used her mixer until it finally broke, and I still use her huge wooden rolling pins.

Making humentashen is a tradition that started a long time ago!

I made humentashen today, on her birthday, because Purim is next weekend. It could very easily have made me feel terribly sad and lonely. But, today I found comfort in the thought that it’s pretty perfect to be doing something on her birthday that created such a strong bond between us. And, for followers of my blog, I made them on the table I got that replaced Ben’s (click for post). It didn’t feel quite right, but I know he’d still be happy that I’m baking.

Making humentashen on Grandma’s birthday, March 5.

As Gramma Tala said, there is nowhere I go where Grandma is not with me. So are my mom and dad and Ben. It’s not always enough, and the truth is that sometimes it’s not even close to being enough, but it helps me to know that everywhere I go, and in everything I do, I carry them in my heart and in the person I am. I hope that I make them proud.

Happy Birthday, Grandma. I love you and miss you.
And, there are 150 humentashen: 41 apricot, 30 prune, 27 poppy seed, 35 raspberry and 17 pumpkin-pecan

To My Mickey, With Love From His Minnie

 

Today, February 21, is Ben’s birthday. As I often do, I have been reminiscing by looking at old photos. While looking at our most recent birthday pictures, I was reminded about his table that broke over the holidays and, in so doing, broke my heart. That ugly, shaky table held many birthday cakes and other celebrations. I’m glad to have those pictures. I’ve put together a video of photos from some of these 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.

In the background, you will hear The Beatles’, “Happy Birthday.” Ben woke me up with that song every year on my birthday. Now, I am playing it for him.

While it’s emotional to make these videos (click here for the one I made for my dad), I also find it comforting to revisit beautiful memories. It is a good way to focus my attention when I’m feeling down and a positive way to deal with grief. It doesn’t mean that it doesn’t come with tears, but tears are okay.  So are smiles.

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, even if, as Cinderella’s Fairy Godmother says, “even miracles take a little time.”

When Ben proposed to me, he asked me to be His Minnie. So, I now say

Happy Birthday to My Mickey!

With much love and pixie dust from His Minnie

Walt Disney World, Halloween

Ben and I at Walt Disney World, Halloween 2011

So This is Love… The World According to Cinderella

Cinderella, Disney, ALS, Grief, Caregiving

Walt Disney World
July, 2014

 

“Cinderella” is celebrating a birthday today. The film was released on this date in 1950. She 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 had feistiness and determination, and also a loyalty to her father’s memory that let her tolerate the poor treatment by her stepmother and stepsisters and maintain her dignity. Cinderella knew 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 and power!

Cinderella knew at her core that, despite 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. 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.

It’s pretty cool to make dreams come true, too. Ben wanted so much to go to Walt Disney World as often as possible. That last trip we took, in July 2014, was a dream come true for him. It was a challenge, and I wished a lot for things to go smoothly. They went fantastically! We even had a Walt Disney World Halloween in July! Now THAT’s pixie dust and Disney magic at their finest!

Ben and I with Cinderella
Walt Disney World
July 2014

Maybe you didn’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 ok.

Cinderella,Disney,ALS,Grief,Caregiving

Cinderella, 1950
Walt Disney Productions

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 the film, “So This is Love.” The song is sweet and romantic, and love is beautiful. In the rough times, it is easy to lose sight of those feelings. The thing is, 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. I believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me. 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.”

 

With love…

The last Valentine I made for Ben, in 2015.

 

Maybe it’s a “Hallmark holiday”  and maybe it’s silly, but I’m sad today. Valentine’s Day has been a favorite holiday of mine since I was a child. 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 them.

My dad passed away the day before Valentine’s Day in 2014. I spent Valentine’s Day that year making his funeral arrangements and that hangs over the holiday now. His birthday is the day after Valentine’s Day. There is a melancholy that pervades these days. 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.

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 and to still be surrounded by much love. Therefore, I continue tapping my inner child with my card-making tradition. I wish everyone a Happy Valentine’s Day filled with love and friendship, and a sprinkling of pixie dust!

Valentine's Day, Disney, Grief

One of this year’s cards. Ben loved Sully and he would have especially loved this card, although every one is different. I don’t know what I would do without crafts!

 

 

Always Let Your Conscience Be Your Guide

Caregiving, Walt Disney World, Disney, Pinocchio

Pinocchio and Jiminy Cricket
Walt Disney World

Pinocchio was released on February 7, 1940. I do love this story of the mischievous little puppet who just wants to be a real boy. For me, so much of the film is about the song lyrics. They took on a special meaning when I was a caregiver.

When times are hard during caregiving, whether it is in the role of caregiving itself or in watching your caree struggle, it is easy to wish, as Pinocchio did:

I’ve got no strings
So I have fun
I’m not tied up to anyone
They’ve got strings
But you can see
There are no strings on me

There were times when I just wanted to stroll home instead of rushing to tend to Ben, or go to dinner with a friend, or watch tv without an interruption. For me, much stress came when Ben was feeling frustrated and took it out on me by being critical and difficult. Ben did not want to accept that he needed more care than I alone could provide. He did not want to admit that he was afraid to stay alone. I did not know how to approach him about the fact that he needed more care. I didn’t want to disappoint him and yet I was upset because his expectations were unrealistic. I was upset with myself for rarely standing up for myself. Frustration was perfectly understandable on both of our parts.

The truth was that I was attached not by actual strings, but by my heart. When I did have some time to myself, Ben was pretty much the only thing on my mind. If I went out, I constantly texted him to see if everything was ok, even when someone was with him. I knew he was most comfortable with me and I was most comfortable when I was there.

When he did finally agree to get a home health aide, we had our routines for when they would update me. I had my phone with me at all times waiting for his text telling me that he was awake and seated at his computer. Even when he was in the hospital, and I knew he had constant medical attention, I felt the need to be there. After all, he could not even move his hand to use a call button. The strings that attached us were heartstrings, and there was no breaking them.

I had a lot of support from friends, his medical care team and some family. Of course, they were concerned about Ben, but they were also concerned about me and that I was running myself ragged. I know the philosophy that if you don’t take care of yourself, you can’t take care of anyone else. But, it was impossible for me to prioritize myself knowing that Ben had ALS and it was progressing, and knowing that he could not help needing assistance. In the back of my mind, he was dying, so while he was here I had to do anything to help, advocate for and entertain him.

There are also certain realities that affected caregiving. Insurance does not cover home health aides. Since ALS is a disease that does not have a predictable progression, even when he admitted to needing help, he was afraid that he would completely deplete his savings. These are such stressful situations to deal with in the midst of dealing with the physical and emotional impact of the disease. It is tragic that better care and attention is not given to circumstances such as these and to supporting caregivers and carees. I could devote many blogs to that subject!

I had so many people tell me that I simply had to tell Ben that I could not care for him anymore, or he could not stay in the apartment anymore, or he had to begin to pay for care. People are very good at giving advice. And, in my experience, they really do mean well. Interestingly, they don’t always follow the advice they give. Some people who told me to take a hard line with Ben have been in caregiving situations where they were also towing the line without support and with unrealistic expectations from others. In grief, people have also told me what I “should do.” Again, they mean well. Some people think that blogging and pursuing opportunities to support other caregivers keeps me in the past. I disagree. I feel it is important, and even responsible, and it is also rewarding. It allows me to take my experiences that have shaped me and use them positively as I live. But, no one should really have to defend themselves. I say this here because, as caregivers, we all have to redefine our lives, and maybe my own experience will give other caregivers food for thought.  The bottom line is that we all know in our hearts what we have to do because our consciences are our guides. We can request and get advice, but only we know ourselves and our circumstances. And, until you walk in someone else’s shoes, you cannot clearly judge them. I mean this about caregivers and carees.

Jiminy Cricket was so right when he said, “Always let your conscience be your guide.” I had to do what I felt was right for Ben. I hope that I’ve come out of the experience with a stronger ability to communicate my feelings, but I still would not have changed my actions. Although I always worried that I was not a good enough caregiver, particularly when Ben was in bad spirits and critical of me, I let my conscience be my guide. I look back and am grateful that, in the end, Ben was able to stay at home with me until he went into the hospital, and I was at his side until he left this world.

As I wrote in a previous post, I still believe in making wishes, and I love the song “When You Wish Upon a Star.” I wished that Ben would find peace and I do believe that wish has come true and that he is in a place where he can walk and talk and eat and play his musical instruments. I wish for a cure for ALS. I will continue to wish until it comes true because, as the song goes

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true

All music and lyrics by Leigh Harline and Ned Washington