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What “A Wrinkle In Time” Taught Me About Caregiving Warriors

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Last weekend, in keeping with the tradition that Ben and I had for seeing Disney films on their opening weekend, I saw A Wrinkle in Time. It is difficult for this Disney fanatic to admit that I was disappointed, but I was able to see beyond the film’s reliance on special effects to be touched by powerful messages that resonated with me. The film prompted me to go home and reread Madeleine L’Engle’s book on which the film is based, and together, the book and film have been a moving experience.

In Disney’s film, A Wrinkle in Time siblings Meg and Charles Wallace are on a quest to find their father, who has disappeared as a result of a scientific experiment to cross time and space to find other planets. They are led on this quest by the guiding spirits of Mrs. Whatsit, Mrs. Who and Mrs. Which. It is a fanciful story, but one that touches on love, hope, faith, and stretching your mind to see possibilities. Not surprisingly, I saw many parallels to the role of caregivers.

The spirits tell young Meg that they are in search of “warriors” who will “serve the good and light in the universe.” I could not help but think that this is a fitting description of caregivers. We are there to help our carees with their physical and emotional needs, to advocate for them, and to make life as positive as it can possibly be.  My support of Ben encompassed all that would enhance his quality of life and support his wishes. That’s what a caregiver does. It took me a long time to understand why people called me brave when they described my experience with Ben. But, as caregivers, indeed, we are brave. Although ordinarily fairly shy, I was a fierce warrior when it came to advocating for Ben. I could not see it at the time, but now, I look back at that experience with pride and love.

As fierce as I could be, and as joyful as my demeanor usually was, so that I could almost always make Ben laugh, Mrs. Which hit the nail on the head when she said, “The only thing faster than light is the darkness.” In A Wrinkle in Time, the “It” was the darkness, the negativity, the hate. For us, the “It” was ALS. As much as we wanted to be hopeful and I wanted to be a cheerleader, after any kind of scary incident, we would quickly fold under the darkness of ALS as it took away Ben’s ability to walk, to use his hands, to chew and swallow, to speak and to breathe. We had good, loving and silly moments, but each struggle and crisis cast the shadow of an inescapable darkness. We fought to keep those positive moments and attitudes, but it was a constant battle.

As Meg, Charles Wallace and their friend Calvin embark on the journey to find their father, Mrs. Witch cautions them that, “You’re going to be tested every step of the way. Have faith in who you are.” This is a caution for every caregiver. The tests never end. I was tested with every issue that arose along the way as Ben’s ALS progressed. As life got more difficult for Ben- and his tests were never-ending and impossible to fathom- it became more difficult for me, too. My physical strength was first tested when Ben began to fall. Lifting him was quite a challenge and did eventually sometimes require my emotional strength in insisting to Ben that I had to call 911 for assistance. Transferring Ben from his chair also tested my physical and emotional strength. I had to overcome my generally squeamish nature to tend to Ben’s daily living needs.  It was exhausting and devastating to see him struggle with the physical challenges and the way that they made him feel, to juggle a full-time job with full-time caregiving, to deal with the fact that he was going to die and to help him deal with that fact. Navigating these issues constantly tested our patience, as we experimented with accommodations, mishaps, disappointments and frustrations. Faith in each other, maybe even more than in ourselves, allowed us to find the strength within ourselves to pass all the other tests. At times, however, we kept Finding Nemo‘s Dory’s mindset to “Just keep swimming.”

Meg’s mom tells her, “My love is always there, even if you can’t see it.” Ben and I had to have that faith, and to be perfectly honest, it was not always easy. We lost patience with each other, hurt each other’s feelings, and went through phases of hopelessness and helplessness. We could see past our disconnects, impatience and frustrations because even when it was not apparent, the love we had for each other was always there without a doubt.

Meg was able to reunite with her dad and bring her back to Earth. Of course, I could not “wrinkle time” and bring Ben back to this dimension. I’ve written so many times that Ben is with me in my heart. I know without question that although he has gone, his love is always here. Even though it does not always compensate for his physical presence, I feel him in so many ways. This film let me realize and embrace the unexpected gifts that Ben left with me. Through this experience, I gained a certain confidence, and I believe that Ben was happy to see that because he never lost confidence in me. Now, I have begun to acknowledge the quiet warrior within myself who, despite a bumpy road, is forging a new path, guided by the spirits of Ben, as well as of my mom, dad and grandma.

The film A Wrinkle in Time did remind me of those beautiful and important messages that I hope will support, comfort and motivate other caregivers. However, my suggestion to you, which may be particularly helpful if you cannot get out to a movie theater, is to read the book while you wait for the film to become available on DVD/Blu-Ray/Digital.

What “The Fox and the Hound” Taught Me About Grief

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On the heels of January 13 being the anniversary of my mom leaving this earth, February was filled with anniversaries- my dad’s birthday and the day he died, Ben’s birthday, the date of my grandma’s death, and two and a half years since Ben died. I didn’t mark the 6-month date in a blog post, but I was keenly aware of it. March began with my Grandma’s birthday. All of these events made all the more resonant Widow Tweed’s words to Tod in The Fox and the Hound:  “Goodbye may seem forever, farewell is like the end, but in my heart is a memory and there you’ll always be.”

Each year, when I am hit with this block of dates, I relive all over again the losses and how they happened- the hospitals, the VA, the hospices, the crises, the goodbyes, the sadness and fear and even anger. I lament the many ways that life changed with each of these losses, and I think about how I have lost the family that was my bedrock. At a time when I have begun to feel more joy and comfort in memories, and I am gaining perspective on my relationships and my experience with grief, this block of time definitely feels like a setback.

I think back to when my mom died of a sudden massive heart attack, and it completely uprooted my world. My mom and I spoke many times each day, spent so much time together, and when she died I simply did not know how I would go on. For quite some time, every morning I awoke, sat on the sofa trying to decide how I would spend each day, until evening fell, and I could just get back into bed. When I did go outside, something would invariably remind me of my mom and I would break into tears. It was unbearable. Family events without my mom were traumatic. During that time, I was completing my Master’s Degree and I was hired to work with children in a hospital. I relished that time because I had to put my own grief aside for a few hours to focus on the needs of the children, which was rewarding and purposeful. Other than that, the only thing present for me was her absence.

With each subsequent loss, I went through a similar process, though, sadly, I knew more of what to expect.  With Ben, the levels of grief were particularly layered and they began during his battle with ALS- loss of the life as we knew it, shifts in our relationship, and, ultimately, supporting his decision to go off life support and preparing to be there for and with him as he left this world on his terms. Experience did not ease the pain of my losses by any means, but maybe it helped me to understand it and adjust more quickly to coexisting with the pain of grief.

Although I did question it when I heard it, I now believe that Cinderella’s Fairy Godmother was right that “Time passed and pain turned to memory” (live action Disney Cinderella, 2015. Click here for that post). I do remember those awful days of grief. At this time of year, in particular, but also at other times, anticipated or unexpected, I still get hit by waves of grief, sadness and missing everyone. But, I also have vivid, beautiful memories of these beloved people. I look at myself and know that they have all helped to shape the person I am today.  The memories are loving, and also truthful, and they have offered me a better understanding of myself and those relationships. They have led me to want to offer comfort and support to other caregivers and people in grief and to want to find and keep love in my life.

I’ve come to realize that although I said goodbye, our relationships did not end. Now, I carry our memories in my heart, where they will always be to guide and inspire me and to surround me with love. It is not the same as having them here, but it is a lot.

By the way, The Fox and the Hound is a truly touching story that I highly recommend. It has sweet messages about friendship, loyalty and acceptance.

A Birthday Tribute To Grandma

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Today would be my Grandma’s birthday. I was a mommy’s girl, a daddy’s girl and a grandma’s girl. That has stayed with me. 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.

How appropriate that last night, Disney Pixar’s Coco won an Oscar for best animated film. Coco was absolutely beautiful, but very emotional, given my own losses. For one thing, the character Coco is young Miguel’s great-grandma, who is delighted by her great-grandson, although her memory of him and of everyone, is fading. But, Coco is loved and respected, cared for by the whole family. My family lived with Grandma, too, and we all cared for her as she succumbed to cancer. I was happy to see Disney tackle the issues of respect for the elderly and memory loss in a sensitive, touching way. Although the film unnerved me and had me in tears at various points, Coco was a powerful, and, actually, a positive reminder that Ben, my mom and dad, my grandma and all of the other people I’ve loved so deeply but lost, are always with me in my heart. I was fortunate to be able to tell my dad, my grandma and Ben that I would never forget or stop loving them. Remembering them keeps them close to me always and, very significantly, it keeps their spirits alive. Click here to read more about Coco and its beautiful messages.

The song from the film, Remember Me, is also lovely and moving. I was so pleased that it was nominated for an Oscar.


Remember Me
Lyrics from Coco
Written by Kristen Anderson-Lopez and Robert Lopez
Performed by Miguel, featuring Natalia Lafourcade

Remember me
Though I have to say goodbye
Remember me
Don’t let it make you cry
For even if I’m far away I hold you in my heart
I sing a secret song to you each night we are apart

Remember me
Though I have to travel far
Remember me
Each time you hear a sad guitar
Know that I’m with you the only way that I can be
Until you’re in my arms again
Remember me

Given my own love for my grandmother, the love between Moana and her Gramma Tala in the film Moana also deeply touched my heart.

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

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 also 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. In fact, some of the best shopping I ever did was in her closets and drawers. On a couple of occasions, I was stopped by saleswomen at boutiques because they remembered that before I made a purchase, I called my grandmother for her opinion on an outfit that I was considering. They said they’d never met anyone who called her grandmother. If they knew her, they would have, too. She really had great style. To this day, 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. And, I know that she would have loved Ben.

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 a lasting appreciation of and particular compassion for elderly people.

(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. And, last year Purim fell in time for me to make the humentashen on Grandma’s birthday, but this year I made humentashen last week, on Ben’s birthday, which I’m sure would have pleased them both (Click here for Ben’s birthday post)

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

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

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

Abby

Grandma- Always In My Heart

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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

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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!

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