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Make a Wish

Halloween 2010
Walt Disney World

Our Disney friends do a lot of wishing and dreaming.

Cinderella told us, “No matter how your heart is grieving, if you keep on believing, the dream that you wish will come true.”

Jiminy Cricket advises us that, “When you wish upon a star, makes no difference who you are. Any dream your heart desires will come to you.” He also said, The most fantastic, magical things can happen, and it all starts with a wish.” Jiminy Cricket

Longing to be human, Ariel sings her little heart out, “Wish I could be part of that world.”

According to Snow White,
“Make a wish into the well
That’s all you have to do
And if you hear it echoing
Your wish will soon come true”

Peter Pan wished he never had to grow up.

Aladdin’s was trying to decide which three wishes Genie should grant.

And the list goes on…

Wishes are funny things. We wish on stars, on ladybugs, on birthday candles, on shooting stars. As we grow up, some of us start to believe less, or not at all, in wishes. Personally, I think some people just won’t admit that they still make wishes!  Think about how many times you hear someone begin a sentence with “I wish…” Maybe they aren’t being literal, but I think there is still that little part of all of us that wants to believe. For me, wishing is hopeful. You can call it childish naivete, but I’m fine with that. Wishes carry the faith that things will be okay. There have been times- especially when I was watching Ben and my dad struggle with their illnesses and I was also struggling as a caregiver- when I just needed to believe that my wishes and dreams could come true, despite what logic might have told me.

Walt Disney World
Halloween 2011

Ben and I never made a point of going to the Wishing Well at Cinderella’s Castle during our many visits to Walt Disney World. And then he was diagnosed with ALS. With a diagnosis like that, you’ll find yourself believing in a lot of things! Ben was diagnosed in April 2010 and in May we headed to Walt Disney World, not knowing how the disease would progress. We headed right to that Wishing Well, and we returned each time we went there after his diagnosis. I emptied a purse of coins into that Well each time, wishing that his ALS would go away, that we could turn back time, that there would be a cure. Did it change anything? Did his ALS go away? No. The disease took away his abilities one by one- physical devastation for him and an emotional toll on both of us. And, our happily ever after was cut very short.

So, how I can say that I still believe in wishes? Because my heart needs to.

Halloween 2010
Walt Disney World

When we went to Walt Disney World for the last time, in July, 2014, we went on the Pirates and Pals Fireworks cruise, where we met Captain Hook and Mr. Smee and then took a boat ride with a very funny pirate to watch the “Wishes” fireworks show from the water. Ben loved watching the fireworks at Walt Disney World, and the display really was pretty spectacular from the lagoon. When the “Wishes” song played, as we listened to the words, we both cried. For a lot of reasons.

In our hearts, we both knew it would likely be our last trip to Walt Disney World. The progression of ALS varies from patient to patient, so although we knew the eventual outcome, we did not know where the journey would lead from day to day. We just wanted to be able to wish on those stars and have our dreams come true. It’s that conflict between being realistic and being hopeful.

Excerpts from the “Wishes” Fireworks Show

Star light, star bright,
First star I see tonight.
I wish I may, I wish I might,
Have the wish, I wish tonight.

Oh, a world of wishes,
A world where dreams come true.
So make a wish, see it through.
Dare to do what dreamers do.

CHORUS:
Wishes…
Dream a dream.
Wishes…
Set it free.
Wishes?
Trust your heart.
Just believe.

We’re all just children,
Reaching for our dreams.
They’re shining high above us,
And even though it seems so far (so far)
We put our faith and hope on a shooting star.

JIMINY CRICKET
You know, any wish is possible. All it takes is a little courage to set it free! A wish is a powerful thing—especially when it comes from the heart.

BLUE FAIRY
Remember, we must always believe in our wishes, for they are the magic in the world.  Now, let’s all put our hearts together and make a wish come true.

Pirates and Pals Fireworks Cruise Party
Walt Disney World
July 2014

 

Pirates, Walt Disney World,ALS

Ben loving the Pirates & Pals Fireworks Cruise.

I think one of the hardest things in life is feeling that there is no point in having faith in wishes and dreams. As Mrs. Potts told Chip in Beauty and the BeastYou don’t lose hope, love. If you lose hope, you lose everything.” So, I keep wishing and believing that my dreams can come true. Without that mindset, I don’t think I could have gotten through caregiving and watching Ben and my dad struggle. I don’t think I’d be able to envision working through grief. We wished for a cure for ALS as we tossed our coins into the Wishing Well, but that wish did not come true, at least not in time to help Ben. Of course, as Cinderella’s Fairy Godmother said, “Even miracles take a little time.” I will wish for that cure until it happens.

For me, as I’ve written before, the pixie dust may be in the perspective. Ben and I did have some wishes come true. For four years, Ben managed pretty well with the disease. He did not want to lose his ability to walk, but he made using the scooter and then the electric wheelchair so much fun. With Ben zipping around, we laughed our way through the Disney Parks. Although traveling to Walt Disney World became more and more complicated, he handled it with a great attitude and with determination to have a wonderful time, and he did. We always said we wished we could go there more often, and after Ben’s diagnosis, we were able to go there four more times, which was quite a treat and a splurge for us. We relived beautiful memories, created new ones and had a lot of laughs, along with some tears. And, we had a lot of love that got us through very difficult times. So, maybe there was some magic in that Wishing Well. And maybe the true magic was the gift of seeing love, laughter and light in a very dark situation.

Princess Aurora says, “If you dream a thing more than once, it’s sure to come true.” So, I will keep wishing and dreaming and feeling the pixie dust. I hope you do, too, and I hope your wishes and dreams come true.

Walt Disney World
July 2014

Remembering My Mom

My mom and I were always Mickey Mouse fans!

Today, January 13, 2017, marks 25 years since my mom, Sandra-“Sandy”- left this earth. There is not a day that I don’t think of her. I talk about her often, and so much so that some people do not realize she’s gone, or for how long she’s been gone. I don’t know if that is good, or “healthy,” but she is so much a part of me. I still, and always will, wonder if she would be proud of me.

My mom died of a sudden, massive heart attack at the age of 59. She was way too young. The day before she died we were playing outside with our Standard Schnauzer, Dulcie.  There are no hospital memories, or memories of seeing her ill. I’m grateful that my last memories of her are of her laughing. However, there was no opportunity to say goodbye. She was just gone.

My mom and I were very close, or , as everyone said, attached at the hip. My dad always said that he loved to listen to us giggle. She was a child at heart and I get that spirit from her. She loved Mickey Mouse and Paddington Bear and she loved children. Children loved her, too. She was a teacher at our local early childhood school and she loved when kids would greet her when we were out shopping. People laughed that we spoke on the phone many times every single day, but I think we were fortunate to have had such a close relationship. We went to the theater and ballet together and spent a lot of time together and even with my friends. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events to see all we could and find the best sales. She was simply an adorable person. Being in London with her was also a hilarious occasion- I still remember laughing at how I would have to translate English to English because the British accent baffled her. Everything delighted her there, as it still delights me. We had so much fun. I loved my mom and she loved me, unconditionally. Frankly, I could not imagine living after she died.

When I was a caregiver, juggling responsibilities for Ben and my dad, I realized how hard my mom worked, at a time when there was no real acknowledgment of the role of caregivers. My mom was at her core a natural, nurturing caregiver. She took care of my dad, brother, our dogs and me, as well as my grandma, who lived with us, but was also responsible for looking after my great-grandparents, great-aunts and great-uncles, and even my cousins. She even knew the treats that my friends liked and made sure to have them on hand at all times.  She took care of everyone in myriad ways. My mom was the most selfless person I have ever known.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

I realize that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after my grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with my grandma and my dad and helping them tend to various chores. I also loved and kept in close touch with my great-aunts and great-uncles.  I went home every weekend to help in any way I could, and sometimes that was simply keeping everyone company and making them laugh. For a change of pace, I often brought home treats from Zabars or other NYC places. My grandma did not want to be cheered, and I understood that, though it was frustrating to me that she pushed people away. I don’t think that anyone fully comprehends the loss of a child unless they experience it. My aunt, my mom’s older sister, also visited every weekend. But, after a sudden death, everyone floundered and tried to pick up pieces while still in shock and feeling profound sadness at the loss of the key person in our family. As in any family, the dynamics led to tensions that were, at times, explosive. I found that, just like I believe my mom would have done, I spent my time with them being a cheerleader and my private time at home collapsing in grief. Sometimes I came home, sat on the sofa and cried, and at other times I dropped my bags and took myself to a movie just to escape.

London 1987. My mom could not wait to visit the Paddington store!

As time has passed, I think mostly of the wonderful memories of my mom and our time together. So much of who I am and what I do reminds me of her. I get my Peter Pan-like inner child spirit from her. You won’t be surprised that Disney played an important part in our relationship, too. One of my favorite memories is when she called me from Walt Disney World exclaiming, “Abby, I met Mickey!” (picture below, left) Another is watching and giggling through “The Little Mermaid,” especially because my grandma was straight-faced and completely bemused by our amusement.

I proudly say like mother, like daughter!

I still miss my mom terribly. It remains a wound that is easy to open. When watching movies, I often cry at the mere mention of mother daughter love or the passing of a mother, and Ben intuitively handed me tissues in these instances before he even saw my tears. Of course, that made me laugh through my tears, and that was a good thing. Ben never knew my mom, but he knew how important she was to me and it touched my heart that he always marked in his calendar her birthday and this anniversary and on those days he would plan something Disney-related, like our date to “Beauty and the Beast-3D” (click here for that post).

I enjoyed the movie “Brave” and the feistiness of Merida as she searched to find herself. Fortunately, I never had big issues with my mom. But, the scene in the clip at the bottom of this post says it all. Even after 25 years, I just want her back.

I have struggled, I have adjusted, and I have had to accept her death. Now, I take comfort in knowing that she’s always been with me and always will live in my heart. On this day and always, I miss and I love you, Mommy.

Disney Pixar 2012

 

On Blogging and Pixie Dust- Looking Back and Looking Ahead

“Pooh’s Grand Adventure: The Search for Christopher Robin” (1977)
Walt Disney Television Animation

It has been six months since I began this blog, and since it is the beginning of a new year, it seemed like a good opportunity to reflect on my experience blogging thus far and what I would like to see in 2017.

I began my blog with the quote from Winnie the Pooh that you also see in this very moving clip.
“You are braver than you believe
Stronger than you seem
and Smarter than you think.”

Pretty insightful stuff from a kind little boy to that “willy nilly silly old bear!”

Disney has brought me happiness, entertainment, and even life lessons since I was a child, and it was a tremendous bond between my mom and me and then between Ben and me. Disney became an important source of inspiration and strength when I was a caregiver and in my grief. It has brought welcome joy and laughter when I did not believe it possible.  I started this blog because I was working through grief, but also trying to make sense of my experiences in caregiving, and Disney played a pivotal role in this process.  I wanted to share this with other caregivers and people in grief, to forge a dialogue to validate our feelings and support each other as we rediscover ourselves and reshape our lives. That remains a goal for 2017.

If you’ve been following Pixie Dust For Caregivers, you know that in my own experience, my husband, Ben, had ALS/Lou Gehrig’s disease, and at the same time my father, Jacob, had cancer. During the crises, or the exhaustion- physical and/or emotional- I definitely did not feel brave, strong or smart. I often I felt like I was running in circles and going through motions to get through each event. But, saying that quote from Christopher Robin gave me something to hold on to. It became a kind of mantra for me and it never failed to make me smile. Say it. And say it again.

I do find that writing has helped me sort through a lot about caregiving, grief and my emotions. If you like to write, I recommend it as a way to gain some insight into yourself and your experiences. Blogging has been a very powerful way to connect with others, too.

Following is some of the pixie dust that my Disney friends have sprinkled on me, with links to the corresponding posts:

Coming to understandings about caregiving and grief, and finding peace with my experiences, happens slowly and sometimes subtly. It is an unnerving and emotional process with dramatic, sudden, and surprising ups and downs. I have more moments of joy now, and those moments are still sprinkled with some guilt and discomfort. However, I am learning and striving to find ways carry Ben and my dad in my heart as I continue to live. As Christopher Robin tells Pooh in this clip, even though my loved ones and I are not together, they are always with me.

I have communicated with many interesting people at various stages of caregiving and grief. We have found comfort and insight from experiences we’ve shared. I continue to learn and I thank readers who have shared their thoughts. I hope that 2017 brings new revelations and understandings as I continue to seek new ways to honor the memory of my loved ones and to bring new joy, peace, laughter and love into my life.

What do you wish for yourself? Please let me know in the comment section below. If you don’t see the box, click on the title of this post. Thank you!