ALS

Wisdom From Olaf About Caregiving and Love

Olaf had to come home with me!

I recently attended Frozen, the new Disney musical on Broadway. Frozen certainly became a phenomenon among Disney films. The Broadway version does not disappoint. It is magical, wonderful and beautiful to watch, with clever surprises along the way. I would love to have seen it with Ben. I have loved going to the theater since I was a child, but Ben had never been to a Broadway show until he met me. He came to love shows and when I went through his things after he left this world, I was truly touched to see that he kept all of the Playbills and ticket stubs from the many shows we saw together. It has taken me a while to truly love going to the theater again, because I went through feelings of guilt for claiming the freedom to participate in things like theater, which I could not enjoy when I was caregiving, and I simply missed going with Ben. But, now I again find great comfort, delight and inspiration from going to the theater. I do notice that I often look at productions through Ben’s eyes. I imagine what he would think, what I would say to him, what inside jokes would be triggered. It’s what I need to do, at least for now.

Frozen has romance, royalty, family strife, tested loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?!  Seeing the show triggered that when I saw the film, it struck several chords for me as a caregiver, and I am using images from the film in this post.

Of course, Let it Go has become an anthem for finding all kinds of strength. I know that it is healthier, and I feel better, when I can let go of anger, of bad memories, and of resentment. When I was caregiving and in grief there was a lot of that, for many reasons. I must admit that letting go, in general, is not always easy for me. I have found, however, that it is better to put my energy towards gaining perspective that allows me to let go of the things that are over and done, that I did not create and that I cannot change.

For me, it is Olaf, the sweet and goofy snowman who so beautifully summed up my caregiving experience at its core, when he pointed out to Anna that, “Love is putting someone else’s needs before yours.”

"Love is putting someone else's needs before yours," Olaf,Frozen,ALS

“Love is putting someone else’s needs before yours.”- Olaf, Frozen

We all know that we have to take care of ourselves. We have also heard that if we don’t take care of ourselves we will not be able to take care of someone else.  After all, if we don’t take care of ourselves, we might become ill and will then be incapable of caring for someone else. I cannot tell you how many times I was told the airplane analogy of putting on your own mask first, so you could then help someone else. And yet, as caregivers, we do not always take care of ourselves. In fact, we rarely take care of ourselves.  Hearing that advice became irritating because I knew that I should take better care of myself, but I also knew that I couldn’t. Why? Crises occurred, I was exhausted, there was not enough time, and the list goes on. Ultimately, love meant putting the needs of my dad and Ben first.

When my dad and Ben were ill and needed help, their needs were immediate. They had terminal illnesses. If my dad needed to go to the Emergency Room or if Ben needed to shift his position in bed or needed to use the commode, it didn’t matter that I needed sleep to be able to function at work or if my back hurt. I would find a way to catch up on sleep. I would go to physical therapy or take a pain reliever. Their needs could not be postponed.

I’ve written about the stresses and emotions of caregiving. I’ve explained that my loved ones were very concerned about me because I was running in circles, particularly when I was simultaneously caring for my dad and for Ben. It was my routine, my normal, and I just went with it. I do remember that during the time I took family leave, I enjoyed my time on the train, on the way to and from the hospice, because for those 5 hours every day, I was by myself, even though it was with phone in hand to manage any issues that arose during my commute.  Enjoying my thermos of tea on the train while listening to music became my way of taking care of myself.

I don’t think that I realized at the time that I did not really have an opportunity to deeply feel the grief of losing my dad. I was taking care of Ben, who was also struggling with this loss because he loved my dad.  Also, the death of my dad was a scary and sobering reality check for Ben, who lived in denial of that eventuality. For me, it was one step in the sad forecast of my lonely future. I couldn’t grieve with Ben because I did not want to upset him, but I also could not grieve on my own, because there was too much to do and I was working full-time. At times, I did feel like I was melting down, but I did not see any options, and I was so immersed in handling my caregiving tasks and full-time teaching that I just kept plodding along, with a few pity parties and venting to friends and family in conversations or emails and texts. Sometimes that was a distraction from the grief, but it also meant that the grief simmered within me.

I have to explain that although there were times when putting my own needs aside was the obvious and the only solution, it also caused frustration, sadness and anger. I felt depressed and lonely and frightened, and Ben and I were not always patient with each other, which led to resentments on both of our sides. Unfortunately, although I recognized that I was near a breaking point, I could not convince myself to shift my priorities in a way that changed my routines and accommodated my needs.  I write this because saying that love is putting someone else’s needs first does not mean it is always done easily, graciously or without inner conflict. Everyone’s feelings matter, but they have to be prioritized.  Even in retrospect, despite what reason may have indicated, my heart knows that it was the right and only thing to do.

"Some people are worth melting for," Olaf, Frozen,ALS

“Some people are worth melting for.”- Olaf

Olaf was so right when he said that, “Some people are worth melting for.” While putting my dad’s and Ben’s needs first sometimes caused some melting, it was in the literal letting go of them that I truly melted. But, love meant supporting their wishes.

I did not like to see my dad in a hospice, although he got such wonderful, compassionate care. I melted as I saw him slipping away, but letting him go as he wanted, and very peacefully, was more important than my desire to keep him with me on this earth.

Love meant dealing with the fact that Ben would have gone to a facility if he had chosen to stay on life support. With a tracheostomy and feeding tube, Ben would have needed 24/7 nursing care that could not be accomplished at home. It was a bleak option, but his needs were the priority and as much as it devastated me to think of him in a facility, and it devastated him to accept that he would not be able to be at home with me, we both had to come to terms with that reality. I worried about his being alone while I was at work. I worried that the staff would not be as attentive as I had been. I did not share those worries with him, but I melted when I thought about it.

When Ben decided to go off life support, I melted because I did not want to lose him. I stood by his decision to go off life support because only he could decide how to live and die with ALS. It was a conflict for me because although I was not prepared to lose him, I was relieved that he would no longer suffer with the disease. I was at his side the day he left, we said our vows, and he was surrounded by loved ones and music. It was worth my melting for him to feel loved and comforted as he left this world on his own terms.

I loved my dad and Ben with all my heart. Losing them, particularly so close in time (a year and a half), was very difficult. But, it was worth melting to have shared the love that we did and to let them go and find peace on their terms.

I would like to state the obvious and suggest to caregivers who are reading this that you take care of yourselves and put yourselves first. But, we all know that won’t always happen. Maybe sometimes. Try. Plan. Fantasize! Taking care of yourself does not have to be big events. Take moments for yourself, even if it is a mental escape, or a nap, or a quiet cup of coffee or tea on your way to an appointment!  The thing is that, as caregivers, just like Olaf, you know and are experiencing and demonstrating the true meaning of love.

Walt Disney World,Frozen,ALS,Caregiving

Walt Disney World’s Hollywood Studios (July 2014)

Heartwarming Thoughts When I’m Feeling “Frozen”

"Love is putting someone else's needs before yours," Olaf,Frozen,ALS

“Love is putting someone else’s needs before yours.”- Olaf, Frozen

 

How could I not think about Frozen on a day like today? It’s a wonderful film with romance, royalty, family strife, tested  loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?! I’ve written before about what Olaf knew about love and melting (click here to read that post), but a day like today once again brings Olaf’s lessons to mind. The sweet and goofy snowman continues to sum up my caregiving experience at its core.

On this freezing cold day in New York City, amidst several freezing cold days here, I could not help but reflect on days spent trying to help Ben to keep warm.  As I am writing this, I am sitting in Ben’s huge old sweat pants from Walt Disney World, along with his Mickey Mouse thermal shirt and Walt Disney World Christmas sweater. My apartment is unusually chilly- normally it feels like a sauna, so I’m happier like this. And,I like to wear Ben’s clothes. They feel cozy and like he is wrapping himself around me, and that warms my heart. Unfortunately, it was not easy to keep Ben warm.

Before ALS, Ben and I both liked the cold. Other than Walt Disney World, Vermont was our favorite getaway, especially in winter. Once ALS progressed, the cold posed challenges and problems for Ben. It was harder for him to move when he was cold. I think it may also have affected his respiratory comfort, though his significant decline in that area began in the warmer weather.

Our apartment is very drafty and Ben could not tolerate the cold. I bought big plastic insulation tarps and put them over our windows. They did help but it looked terrible and they came loose frequently, sometimes requiring middle of the night fixes.  We did what we had to do. We became accustomed to living crisis to crisis in an apartment that was a disaster.

"Some people are worth melting for," Olaf, Frozen,ALS

“Some people are worth melting for.”- Olaf

Most blankets felt heavy on Ben as his strength diminished, and piling on sweaters made movement even more difficult than it had already become due to the ALS. We found a couple of quilts that were the size of a throw, which made it easier for him to manage. We could not sleep under the same blanket because any tugging or shifting made him uncomfortable. A blanket may seem like a very minor accommodation, but it symbolized relationship changes that took an emotional toll. Suddenly, the life we enjoyed began to  change and foretell a sad future, and the way we related to each other changed in very profound ways as we shifted from being husband and wife to patient and caregiver.

I am resourceful and a born shopper, so I was always delighted to find solutions, even if they were temporary. Ben was very skeptical of the little space heater that I brought home one day. I plugged it in as he said it wouldn’t help. It did! He loved that space heater!

I made a blanket of some of our favorite photos from Walt Disney World, and a microfiber towel as well. For the days that Ben did not get to his computer, or felt chilly, he was always surrounded by the photos that he loved so much.

Photo collage blanket.

Photo collage towel.

Dressing for cold weather, even within our apartment, also required creativity. Ben loved insulated puffer vests because they kept him warm without bulk and heaviness, and also  gave him some freedom of motion in his arms. He liked sweatshirts that were zippered hoodies because they were easier to put on and to remove, even though he needed assistance to do so. He did find adaptive zipper pulls that he liked. These gave him some independence and that was important for his frame of mind.

Fleece sweaters were often a great option because they were lightweight. Waffle/thermal shirts were cozy for him and allowed for easy layering. He was amused by the camouflage shirts I found for him because they reminded us of how much my dad, the Marine, loved his camouflage! Even as the temperatures dropped, Ben still wore his favorite regular tshirts underneath his warmer clothes. He loved his tshirts. They keep me warm now in the tshirt quilt that I made from them.

Caregiving,Grief,ALS,Memories

A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.

It was definitely a challenge for both of us to be comfortable in the same space. I was warm or Ben was cold, but Ben needed to be warm. Physically, the apartment was a mess, with supplies accumulating, space shrinking, and furniture moving according to his needs. At one point, my dresser had to be moved to accommodate his chair, and it blocked the closet. For several months, I either wore what was in the drawers or whatever my hand could reach in the closet. Now, I look back and laugh at the chaos that was our life. Then, we lived crisis to crisis, and despite our frequent ability to see the hilarity in the situations, it sometimes left us feeling helpless and hopeless.

Today, wearing Ben’s clothes and knowing how miserable he would be in the chill, I am feeling a little melancholy. It feels like a long time ago that these were my caregiving responsibilities, and it also feels like just yesterday. I miss him. I cannot deny the inconveniences and the emotional pain we both experienced. Ultimately, Ben’s needs unquestionably came first, and a little melting was a small price to pay. It’s taken me all this time to rebuild the snowlady that I am. I realize that I did find great satisfaction in being able to help Ben and I take pride in the love we shared and the trust he had in me. My heart is warmed to know that now he is free of the constraints of ALS.

Walt Disney World,Frozen,ALS,Caregiving

Walt Disney World’s Hollywood Studios (July 2014)

Ohana Means Family

At this time of year, family comes strongly into focus and reminds me of how my family has shrunk and changed. Although I love the film, Lilo and Stitch and its messages about family, love, acceptance and grief, I have always been troubled by its very famous quote, “Ohana means family. Family means nobody gets left behind-or forgotten.” Unfortunately, to a large degree, this has not been my experience and that makes me sad. For various reasons, and sometimes on the grounds of religion, there has been conflict in my family, and caregiving for my grandmother amplified our issues after my mom died. I learned the difficult lesson that, with rare exception, aside from my dad, I could not depend on the love of my family to provide the support that was needed. Family let Ben down, too, and usually, it was not something that I could prevent, though I could support him through it. As I have said before, I am eternally grateful for friends who are my family. Caregiving and loss showed Ben and me the people we could genuinely count on and helped us to redefine the notion of family.

When Ben was diagnosed with ALS, of course there was no question that I would be his caregiver. His family was certainly upset by the diagnosis, and there were many promises made of visiting and helping him. For the most part, those promises did not materialize into actual visits or even regular expressions of concern about how he was doing. He reached out to people and then they usually responded, with what became to him empty proclamations of love and caring, and they rarely took the initiative to reach out to him. It hurt him and frankly, angered and shocked me. Ben was always witness to my devotion to my dad–he listened to our countless daily phone calls, watched me cook and shop for him, visit him on weekends, accompany him to his doctor visits, make follow-up calls to doctors and companies treating his cancer, just as I did for Ben. That was not happening for Ben with his family, with rare exception. There was, however, a lot of drama that was unnecessary, ridiculous, and selfish.

I am grateful that while Ben was in the hospital, one of his daughters frequently visited him. She was with him at the end. She and I had a lot of time to talk in those weeks. Now, we are close, and I am grateful to have her, and, also, a direct connection to him, in my life. There were also a few nice surprises along the way, of a few of his family members that expressed genuine caring and concern. We shared a love of Ben and respect for each other that continues today.

In my experience, it has been the people who are least involved who have the most opinions and make the most judgments. I will admit that it was, at times, difficult to put aside the drama and just focus on Ben’s needs. Family came to the hospital and talked to him about his going home, getting his hopes up without asking any questions or having realistic information, but with plenty of judgment, especially of me. A friend of his visited and tried to dissuade him from separating from the vent on religious grounds after giving me a hard time about the issue. While visits can be a good time for a caregiver to take a break, I could not leave people alone with him because communication itself was challenging and discussions were often inappropriate and inaccurate. Mostly, they were not a comfort to him.

If you are a primary caregiver, if family is not supportive, of course it is hard not to dwell on it. As someone who is emotional, I won’t suggest that you ignore your feelings. So, what can you do? As long as you keep family informed, express needs and set boundaries for what and when you will dispense updates, you will have some level of control of, and grasp of, your caregiving responsibilities and scenario. Family members will have to live with their decisions and you will be able to plan accordingly. It doesn’t mean that you won’t be disappointed or saddened, but you will have a keener understanding of your circumstances and interpersonal relations. This is likely to allow you to detach a little bit as family visits happen, or don’t, drawing attention to the positive aspects of visits (or not) on your caree.

For your own self-expression and reflection, things you might consider are: keeping a journal, seeing a therapist, venting to friends, attending a support group or, if it is difficult to arrange to leave home, there are online and phone support groups. But, please don’t lose focus on the important, loving and invaluable work that you are doing for your caree.  As I have sorted through the many memories surrounding Ben’s care, I have learned to let go of anger and resentment and I recall incidents more as a matter of fact and sequence than with emotional attachment to the people who let us down. I can look back and feel grateful to have been able to show Ben so much love, though I also wish with all my heart that we never had to go through the experience.

If you are a family member of a caree, please be honest with yourself about the relationship that you have had with this person and the caregiver. Be realistic about what you can and are willing to do. If you want to help, ask questions about how you can help and also before judging. Remember that this is not about anyone but the caree, and that the primary caregiver does have the greatest perspective, knowledge and responsibility to the caree.

I wrote this post because the holidays are a time that can be so stressful for caregivers and carees, and high tensions can yield high drama. At these times, it is so important to have a clear understanding of the people in your life who are reliable and truly devoted. This does not necessarily mean cutting people off from your life, but rather knowing who will be there to have your back and the back of your caree. Lip service is irrelevant when it comes to a crisis. Ben and I learned that we could not rely on his family. Fortunately, we did have friends who stepped in and helped without needing to be asked. They were not family. Yet, they were. Know who your “ohana” really is because they will not leave you behind. That is something to celebrate.

On Disney’s “Coco” and The Power of Our Memories


The lyrics from the song “Remember Me” were very emotional.

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

Today I went to see the new Disney movie, Coco, which opened on Wednesday for Thanksgiving weekend. It highlights Day of the Dead, which is a favorite unit of my Spanish language classes, who are often surprised to learn that it is not just “Mexican Halloween.” We make calaveras, the decorative skulls, and we talk about the concept of how the spirits of loved ones who have passed away are believed to come back to visit their families on that holiday. Their spirits live on as long as they are remembered by the living who loved them. I always tell my students that although I don’t really celebrate Day of the Dead, I am moved by the idea that the spirits of my parents and Ben would come back to me every year, but that I often feel that they are watching over me.

July 2014.
Trying on sombreros at the Mexican pavilion never got old with us!

2006, before Ben’s ALS diagnosis

I have always looked forward to the new Disney and Pixar films. I was definitely intrigued by this movie because of the theme. When Ben and I went to Walt Disney World, I did love the Mexico pavilion at Epcot, where the artisans could be seen making beautiful Day of the Dead crafts and spirit animals. As I took my seat in the theater, I thought about how one of Ben’s and my favorite traditions was going to the Thanksgiving Disney movie release on opening day, or opening weekend. As his ALS progressed, that became more difficult, until it became impossible. Today, I missed him terribly and felt very lonely and alone. Some things- particularly Disney things- will never be the same without Ben.

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. I was happy to see Disney tackle the issues of respect for the elderly and memory loss in a sensitive, touching way.  But, it was also poignant, since it echoes my own experience with my great-aunt, with whom I was so close, but who now seems to know that I am familiar, but does not know who I am. Since she does smile and get animated when I visit her, I comfort myself with the belief that memories of me are somewhere in her mind. I cannot have the same relationship with her, but I continue to visit her and take comfort in making her laugh and smile without dwelling on that she does not know my name, or that I am her niece, the daughter of her sister, whom she also does not remember.

Also integral to the plot is the profound love of and connection to music that Miguel feels to his core. Ben would have strongly related to that. Playing music and recalling lyrics that resonated with him were key to who Ben was. I took comfort in knowing that Ben would have enjoyed Coco‘s emphasis on the vitality of music.

Since my birthday and Halloween, I’ve been struggling with missing Ben so much. This was our favorite time of year and there are constant reminders of him that make me feel very alone.  Although it 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.  Sometimes that’s not enough, like today, when I wanted to be sitting next to Ben and holding his hand, knowing that as soon as he would have seen Coco he would have handed me a tissue and I would have started laughing through my tears because he knew exactly what tugged at my heartstrings.

In typical Disney fashion, it is a movie that can be enjoyed by children of all ages. It is vibrant and colorful and fun, yet it also carries important messages for all of us about life, aging, love and loss. Ben would have loved, as I did, that there was even some Spanish language in it!

Donald Duck hangs out in the Mexican pavilion at Epcot but I don’t know how much Spanish he spoke!

Gratitude- It’s A Super Power!

 

2011- The first time we went to Fantasmic!

I spoke to my students yesterday about the importance of gratitude, whether or not you celebrate Thanksgiving. When things are not going well, it helps to think of even the tiniest thing for which to be grateful- be it a favorite song or snack. Once you begin to think of those little things, you may very well find that there are many of them. I could see that what I was saying resonated with many of them, and I could see them perk up when I said that I have done that myself. Indeed, feeling and expressing gratitude has been a super power that’s helped me throughout caregiving and grief and emotions that have turned me Inside Out. What more appropriate time to summon gratitude than Thanksgiving?!

Grief is filled with ebbs and flows of emotion, and at times, I give into the loneliness and memories of the ugliness of cancer and ALS, the messiness- emotional and physical- of caregiving, as well as the profound sadness over my losses (A little more than two years have passed since Ben left this world, and it’s almost four years since I lost my dad.) The sadness is magnified around a holiday like Thanksgiving, which reinforces that I’ve lost the family to which I was so close. Thoughts also resurface of Thanksgivings spent in the hospital with my dad or at home with Ben, when he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. And yet, although it was easy to lose sight of it at the time, Ben and I did have things for which to be thankful. Being able to feel gratitude was indeed a super power, because it gave us perspective that allowed us to always see the love that was there. I have been feeling down and alone lately, and reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

“The more you are in a state of gratitude, the more you will attract things to be grateful for,”
said Walt Disney. It certainly feels good to conjure gratitude, though when you’re facing a terminal illness like ALS or cancer, it seems almost disingenuous to think that you can put yourself into a state of gratitude and that you can attract things to be grateful for.  Ben lived in a state of denial about the progression of the disease, and I lived in a state of bracing myself for what might come our way, more relieved than grateful for any day without crises. As time has passed, I’ve learned that “being in a state of gratitude” is not to naively play the Glad Game and turn situations around like Pollyana did. It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the very important power of perspective. I have a good cry when I need to, or when something triggers it, but I can also shift my focus to aspects of these experiences that compel gratitude. Once I’m thinking about things to be grateful for, I realize that I have quite a nice list. That’s a good and humbling feeling.

At the top of my list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving surely was not easy, but it was the most important, valuable, loving and rewarding thing I have ever done. I could not save them, but they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. I treasure the knowledge that they loved me.

I have said it before, but can never say enough, that I am grateful for my friends, who have shown me such kindness, generosity, compassion and encouragement, while I was caregiving and then, in grief. Their spirit extended to Ben as well. When family didn’t step in or made empty promises to him-and there were indeed disappointments and dramas-Ben and I  could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben remains in their hearts.

I am grateful to find comfort in the arts and in my creative endeavors.  Blogging has been tremendously helpful, and I am grateful to know that readers find comfort in my words.

And, since today is the anniversary of the release of Toy Story, I must note that Buzz Lightyear was Ben’s very favorite Disney super hero. I am so grateful that even when Ben was feeling weak and somewhat defeated by ALS, Buzz brought him so much joy and laughter. This video clip is one of my very favorite memories. I am so grateful to have these memories.

 

Walt Disney also said: We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.

I’m grateful to have settled into my life, enjoying many of the things I always loved, like going to the theater and spending time with friends, particularly friends I have not been able to see in quite some time. Yes, there is still loneliness and aloneness, but I never lose sight of how fortunate I am to be surrounded by wonderful people, a lot of love, and to carry with me in my heart very beautiful memories.

As I’ve said, I lost myself in caregiving but I also found myself. I discovered that I am a caregiver to my core, and I am pursuing my certificate as a caregiving consultant. I am grateful to have met some wonderful people who, tragically, are experiencing ALS as patients or caregivers. Sharing our experiences is emotional and powerful. I’m grateful to believe that wishes can come true and that there will one day be a cure for ALS and all devastating and terminal diseases.

I am grateful to be teaching in a new and wonderful public high school. Not only is it a healthier environment, but it allowed me to start fresh, away from my old school and the memories it held of the crises, illnesses and, ultimately, the losses of my dad and Ben. It is also an opportunity to redefine myself beyond being seen only as Abby, the person everyone marveled at and felt bad for because I spun in circles juggling caregiving and teaching; Abby the caregiver and the Daddy’s girl who lost her dad and then her husband, even though those experiences are an integral part of me. Not exactly who I am now, but as Walt said, I’m opening new doors and finding my way down new paths.

There are and there will be setbacks and I am consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad proud. I am cautiously optimistic about starting down a new path to see where it leads. My memories will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. And, I keep reminding myself of what Christopher Robin said to Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay because I have the super power of gratitude that gives me a positive perspective.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief.

Happy Thanksgiving.

With all good wishes,

Abby

Halloween 2010
Walt Disney World. Cinderella’s Wishing Well. Always wishing for a cure!