Growing Towards the Joy

Strokes suck.  There are just no two ways about it.  They just suck. However, in the time since my mother’s stroke, we have been trying very hard to stay positive and grow towards the joy.  There are many days when I feel like the sun has moved beneath a permanent cloud. It feels like I am struggling futilely through a nightmare. I feel resentful that I can’t just wake up and be done with it all.  On those days, I try to focus on our small victories. 

There was the day I walked in when she was having occupational therapy and she read the message on my t-shirt out loud- “I’m not saying I’m Tinkerbell.  I’m just saying that no one has ever seen Tinkerbell and me in the same room together.”  Until that happened, I didn’t think she was able to read any more.  That was a great day.

There was the day I was doing physical therapy with her and the therapist was trying to get her to take plastic cones from the therapist with her stroke-weakened right hand.  She made several attempts with her right hand, then smiled devilishly, quickly grabbed the cones with her left hand, and began to laugh.  Until that happened, I wasn’t sure she was able to find something to joke and laugh about any more.  That was a great day.

There was the day I came in while she was in the dining room not eating lunch and she started pushing her wheelchair along with her feet. The look on her face told me that she had been waiting for me to show off her new skill. Until that happened, I didn’t know if she would ever have anything about which to feel proud any more.  That was a great day.

There was the day I brought her a card that came in her mail at home. She opened it by herself and immediately knew that it was from an artistic friend of hers because the card was obviously lovingly hand-crafted.  Until that happened, I wasn’t sure she truly knew who I was, much less remembered old friends.  That was a great day.  

I try hard to remember these triumphs when she has a bad day and seems to forget how to do the very thing I was so excited she was doing the day before.  I try hard to remember these triumphs when I invest about six hours of my life on a ten-minute visit with a neurologist.  I try hard to remember these triumphs when I am trying to figure out what I am going to do when the rehab facility releases her.  I try hard to remember these triumphs when she goes back into the hospital because of some secondary issue that the rehab center believes needs to be evaluated.  I try hard to remember these triumphs when I am dealing with the administrivia required to run her life and care. 

I try hard to remember these triumphs when I am sad and scared of the future.  I also try hard to push away the next thought that comes to my brain, unbidden, when I remember these triumphs… that they are slim pickings to be considered joyful moments.  As meager as these joyful moments are, I have to hang on to the certainty that they are indeed joyful moments.  It doesn’t do much good to try to grow towards the sun when your brain is only too quick to bring on the rain.

What joyful moments have you found in difficult situations?  Please share your perspective by leaving a comment.  In the alternative, you can email me at  Thank you all for reading and for your support.  I hope you don’t have to look too hard for your joy today!


Change Squared

A little over two months ago, my mother had a stroke.  I have been posting blog articles that I wrote in advance during the time since she was taken ill.  I thought it was time now to share some observations about the situation with you.

In a wicked irony, the stroke occurred on the very day I posted my article, Growing Up, about the changes in the relationship between my mother and me.

I have been examining the transitions in my life since retirement in excruciating detail in this blog over the past ten months or so.  Despite this little exercise in egomania, the day my mother had her stroke I learned that I know exactly nothing about adapting to change.  Whining about my sod drama pretty much loses its “oomph” when compared to this.

When I went over to my mom’s mobile home (where, yes, she was living alone… as I have had to shamefully admit to one medical professional after another over the past several weeks), she seemed, at first glance, to be asleep.  That wasn’t too unusual, especially since she had been staying up to all hours to watch the Olympics on TV.  However, I quickly noticed that something was very wrong.  Her “magic button,” that is supposed to be her lifeline for help in case of emergency, was on the charger rather than around her neck. I pushed the button and got emergency services, but it is likely that she suffered the stroke several hours earlier.

My initial reaction was pure guilt.  How could I have let her live alone? How could I not have been there when she needed me? How could I have moved her from the world she knew across the country to a very different life?  Have the adventures, fun, and care I hope I’ve provided for her in her new home been enough to compensate for what she gave up? Has she been happy?  Does she regret moving from her old life? Have I done right be her?

These questions quickly morphed into a solid concrete boulder of shame lodged somewhere between my lungs.  That boulder remains to this day, impeding my ability to breath, sleep, and eat.

Even as I struggled with this tsunami of self-loathing, I knew this event was not about me.  I had to put my feelings aside to focus on what my mother needed me to do… whatever that might be.  Once more, I found myself in the situation of having to deal with problems and accomplish tasks I had no idea how to do.  Trying to achieve what she needed or would want was made even more difficult by the fact that my mother’s cognitive and communicative skills at that point were just barely above non-existent.

Trying my best and expecting an incredibly unrealistic standard of adequacy from myself, I plowed my way through fogginess and failure and frenzy to work with the doctors, nurses, therapists, and case managers at the hospital.  I researched and toured rehab facilities so that, when the hospital suddenly announced on Sunday morning that they were going to release her, I was not completely unprepared.  Still, this announcement prompted me to scamper around to ensure I decided on the best facility I could for her.  I hope I did, but there is really no way to know.

While I was pushing my way through the tasks and decisions necessary and keeping other family members informed, I realized I was also pushing through something else.  There was a sadness so deep and dense and profound, it felt like everything I did, I did while swimming through a turbulent ocean of jello.

My mother was living her worst nightmare.  As her body has aged and worn out, she has always said she could live with whatever physical impairments she had to face, as long as her mind still worked.  Now exactly what she has dreaded for years has happened.  Her brain in broken. In the early days after the stroke, it certainly looked like there wasn’t much hope of fixing it.  I couldn’t make it go away.  It felt like there had to be something I could do to fix it, if I could only figure out what.

Maybe for the first time ever, I truly, truly understood what people mean when they say “my parent wouldn’t want to live like this.”  While I’ve always understood the general concept, I couldn’t help feeling that there was at least some measure of self-interest behind the statement.  Maybe the person is actually despairing over how she will take care of the parent without losing her own physical, mental, emotional, and social health.  Maybe she is despondent over finances.  Maybe she is hurting unbearably watching the parent suffer.  However, after seeing my mother for the first few days after the stroke, I could understand the belief that a person would not want to continue to live in that state, self-interest completely aside.

I don’t say that self-interest is part and parcel of the “may parent wouldn’t want to live like this” reaction to imply criticism.  It is absolutely fair, right, and necessary to consider self-interest in making decisions that will impact your life.  Good people consider all interests, including their own, trying to figure out the right thing to do when faced with a bunch of really bad options.  Balancing those interests to pick the course of action that best meets the most needs can be unbearably hard and scary, especially when one of the interested parties has severely impaired cognitive and communicative ability.  I find myself trying to think what my mother would have wanted, based on her general philosophies, before the stroke.  That at least gave me a starting place.  That methodology does have one major flaw, however.  Before the stroke, she had only a theoretical idea of what she would feel like if she was ever in the situation she is in now.

I usually do not sleep at night.  I spend the nights on the internet, futilely looking for any information to make me feel better.  I make endless lists of tasks I have to complete.  Each morning, I face the day with dread.  I dread watching my mother struggle and hurt from the therapies and transfers.  I dread tracking down one or another care professional to get the status of her condition.  I dread the administrivia that I had to try to conquer without a legal power-of-attorney. I dread the decisions that were going to have to be made about her future at some point. I dread trying to find the right words to update friends and family about my mother’s progress and prognosis.   I dread facing the financial cataclysm this situation will cause.  I dread the mourning for the loss of my mother as I knew her.  And at the same time, I am ashamed of myself for being mired in dread.  This isn’t about me; it is about my mother.   Truth be told, the thing I dread the most is facing another day of not being able to illuminate the dark place that my mother’s brain is struggling so hard to escape.

As the days progressed and my mother got therapy at the rehab facility, her situation starts to improve.  Her physicality is improving, as well as her cognition and communication.   The advances are tiny and we are both impatient, but those advances are steady.  I acknowledge and celebrate those small victories daily.  At the same time, each day exhausts, overwhelms, and guts me.  It is hard work to encourage her to do physical activities to maximize her therapy and to come up with exercises we can do together to strengthen her.  It takes incredible concentration to patiently listen and follow what she is saying.  It takes patience and respect to try to converse with her in a way she will understand.  It takes so much resilience to face her slips into a different time or situation on those occasions when her increasing cognition takes a detour.  It takes so much faith to keep going when she bounces back and forth between the hospital and rehab facility, as the medical providers come up with additional concerns to be evaluated.   I’m doing the best I can.  I am sure I am not doing it right.  I’m just doing the best I can.

While my mother battles with her physical recovery and I deal with the pragmatics of her care, we have sad, sparse conversations about independence, finances, and dignity.  I tell her I don’t want her to worry, but I don’t want to lie to her, either.  Some of these conversations are challenging, but, so far, they have also been productive and satisfying.  We try to be hopeful.  We try to maintain some happiness in what we share and what we still have.  In all honesty, though, joy is in short supply.  It is important to keep looking for it, though.  Maybe, just as a flower grows towards the sun, my mother and I can learn to grow towards joy.

As we make some progress, I start looking towards the future and what the “new normal” will look like for both me and her.  I am beginning to learn that there is really no way to know.  Maybe learning to adapt to change means you just have to be able to stand at the edge of the great blackness of the unknown and take a step into whatever is.  I just don’t know if I am brave enough to do that.  I also don’t know that I have a choice.

So what are your thoughts?  Do any of you have any suggestions about how to surf these challenging new waters without getting pulled under the waves by the undertow?  Please share your perspective by leaving a comment.  In the alternative,  you can send me an email at

Thanks for reading.


Can You Still Call It A Vacation After You’re Retired?

A few months after I retired and we moved across the country, Max and I took a trip to Colonial Williamsburg. We were looking forward to exploring the Historic Triangle of Williamsburg, Jamestown, and Yorktown. We would see the remains of the first English settlement in what became the United States of America.  We would watch artisans make glass, silver products, and clothing as it was made in the 1600s.  We would take a carriage ride around the perimeter of the first capital of the Virginian colony and attend a re-enactment of a colonial officer’s treason trial.  We would eat gingerbread made as it was in the early 1700s.  We would stand at the site of the decisive battle of the American Revolution.  Our plans were packed with educational and culturally enriching opportunities.  And shopping.  Besides the numerous gift shops adjacent to the aforementioned educational and culturally enriching opportunities, there was a large outlet mall, a huge Yankee candle megastore, and at least four multi-level shops devoted to selling Christmas decorations.   Scenery, history, and shopping… what more could a girl ask for from a vacation?  Maybe an amusement park?  Oh, there’s a Busch Gardens in Williamsburg, too. 

As we awaited the day of our departure, something was still bothering me, however.  Before we left, Max kept a countdown on the number of days until our “vacation.”  Every time he used the term “vacation,” something just didn’t sit right with me.  I asked him if it was still called a “vacation” since we no longer had jobs and, thus, really, had nothing from which to vacate. 

We tried to think of something else to call this event, but were not successful.  We tried “pleasure trip,” but that seemed too cumbersome.  We tried “getaway,” but thought that didn’t seem completely accurate, as there was no one chasing us.  Besides, there were no criminal activities, machine guns, or speeding cars involved.  Finally, we gave up and stopped calling our impending trip anything at all.

This issue of what to call this trip begged a bigger question.  When we were working, this sort of trip was incredibly fun, partly because all the time spent in this riot of entertainment was time not spent working.  I was worried that the trip would not hold the same appeal and enjoyment as past “vacations” now that the guilty pleasure of playing hooky from our jobs was no longer a component.

On the Sunday we arrived in Virginia, it was drizzling.  We had planned to go to Busch Gardens for part of the day, since I had not realized until a few days before we left (and AFTER I had already purchased online admission tickets) that the amusement park was only open on Saturdays and Sundays at the time of the year we were going.   Something weird happened, though, and I made an uncharacteristically spontaneous decision.  I decided that, instead of braving the rain and racing around trying to get to Busch Gardens to use those prepaid admission tickets, we should just let it go.   Max and I have a tendency to overplan things.  I still refer to our first visit to Disney World as the “forced march across central Florida” because of my obsession with planning the heck out of stuff to avoid missing anything good.  This fateful decision to throw Busch Gardens to the winds ended up setting the tone for the whole trip.  Our pacing turned out to be just perfect.  As we pursued our fun, we did not run; we meandered.  Over the next five days, we saw all the sights we intended to see and more.  We walked aimlessly and endlessly through beautiful, tree-lined paths and reconstructed colonial towns. We absorbed the wonderful atmosphere with the very oxygen that we breathed.  We stopped at the College of William and Mary bookstore several times to browse, bask in the energy, and linger over a beverage.  I spent some time each day in the hotel’s indoor pool.  We ate well.  I managed to purchase goods from all four of the Christmas stores.  We both slept soundly and peacefully every night.   Although I was not aware I was feeling any stress before we left for Virginia, I became acutely aware of the complete absence of tension during this trip.  I was completely in the moment and enjoying everything as it happened. 

Maybe it was a vacation after all.

A few months later, we decided to take a trip to Las Vegas, which rekindled the whole debate.  This trip would not be the lazy, spontaneous type of trip Williamsburg had been.  We had tickets and dinner reservations and had a pretty strict schedule of touring.  As we bounded through the four days in Las Vegas, our steps were springy and our eyes were wide.  Everywhere we looked, there was something different to see and everywhere we went, there was something different to do.  It was like an unending buffet of activity- even when we started to get full; we gulped and savored one more bite.  Still, I found myself still wrestling with the question of whether or not it is still a vacation when you no longer work for a living.  I was able to resolve the dilemma by asking myself a few simple questions:

  •   Was I cooking, cleaning, or doing laundry?  No.
  •  Was I suffering through some new house-related disaster?  No.
  •  Was I hauling my mother to medical appointments or evaluating health insurance plans for her?  No.
  • Was I evicting less-than-cuddly wild animals from my garage?  No.
  • Was I on vacation?    YES!

So what are your thoughts?  What makes a “trip” a “vacation” for you?  Please share your perspective by leaving a comment.  In the alternative, you can send me an email at

Have a great day!

Terri 🙂

My Place in the World

Hello.  My name is Terri and I am a Disney addict.

I never stood a chance.   From the time I was born, my parents called me Tinker Bell.  When I was five, we moved from New York to Anaheim.  Our house was literally in the shadow of Disneyland.  We could see the fireworks from our backyard.   I grew up thinking that Disneyland was the most marvelous “someplace special” that we could go on a family outing.  One year, my parents gave my brother and I the choice of going to San Francisco for my mother’s birthday or taking our usual annual trip to Disneyland.  I could tell that the “right” answer was to choose San Francisco, so I agreed.  I cried myself to sleep for a week.  The last present my father ever bought me was a personal license plate that read “TINKRBL.”  I kept that license plate for three cars.

I made six trips to Disney World in Florida while I was still living in California.  I never had any children and, as would follow, I have no grandchildren.  I enjoy watching kids experience the World, but I have never brought any there on purpose.  I am still Disney-crazed.    I have a wardrobe of Tinker Bell shirts, hats, shoes, and handbags that is the envy of four-year-old girls everywhere.  I even have a custom-made sweatshirt with Tink and her sister Periwinkle on it, proclaiming that “I am the Third Sister.”  For those of you not up on your Tinker Bell lore, google “Tinker Bell and the Secret of the Wings” to get a crash course on the sister reference.  It is all Tink all the time in my world.

When I retired and decided to move out of California to a more cost-friendly area, I feared my very DNA might just unravel if I ventured too far from the Happiest Place on Earth.  I ended up settling in central Florida, where I can get my Disney fix on a regular basis. Max and I put small children to shame in our passion for exploring all Walt Disney World has to offer.  I think I can see skid marks on our annual passes, if I look hard enough.

Disney knows how to entertain children of all ages, even those who are… let’s say… children emeritus.  Judging by the folks I see gracing the walkways of the Disney properties, I have to say that I am not the only one who revels in the Disney experience, despite being well past the age of reason.  After all, who needs reason when you have fantasy?

I have learned some valuable lessons in my adventures with Disney.  There are some things to keep in mind if you, too, are a bit more experienced than your average child and would like to wander the World without benefit of youngsters.  The most important thing is to have your own brand of fun.  If you are thinking of taking your inner child to the most magical place on earth, you might consider the following observations.

It’s all about you!

Stop worrying that you are a grown adult who is at Disney World without children.  If you want to do something, forget whether or not it is appropriate for an adult or if it is intended just for children.  If for some reason there is an age, height, or weight limit on something, some Disney cast member will tell you.  Just about anything on the property, even if intended for children, is available to you if you want.

Embrace the silly.  I always reserve my Fast Pass to visit Tinker Bell when we go to the Magic Kingdom.  The first time we went to Disney World, I really wanted to go to a character breakfast.  I thought that the characters visiting the breakfast might concentrate on families and children.  I thought, as a couple of oldsters unaccompanied by children, Max and I might be a bit on the fringes of things.  I still wanted to go.  I made advance seating reservations for the Cape May Café buffet. I was amazed at how well Disney manages these experiences.  The characters visit EVERYONE.  They float from table to table, regardless of the age of the occupants, spending a good deal of time with every party. Pretty sweet interpersonal skills for animals that can’t talk!

A Little Advance Planning Never Hurts

There are those who insist that a trip to Disney must be approached like a major military tactical battle.   They believe you must get to parks early, experience attractions in a particular order, and avoid liquids so as to minimize bathroom breaks.  I agree that, if you are bound and determined to see the most you can, it is important to be ruled by a grand plan.  On my first trip to Disney, there were many lists and spreadsheets involved.  It is possible, though, to enjoy your adventure without quite so much strategy, if you find the idea of a more leisurely, serendipitous pace more appealing.  With just a little bit of forethought, you can reach a balance between experiencing a great deal of what you wish to see at Disney World and taking things as they come.

The website is invaluable for deciding when to visit to avoid the most crowds.  For a small annual fee, you get access to a number of tools for deciding when to visit, include a crowd calculator which predicts a crowd level for each park, each day.  They have some special magical formula, which is pretty accurate.  Once in a while, they miss a cue, but their ratings are fairly reliable.  Try to plan your visit for days that are rated 6 or below.  Having said that, just know that, no matter what the rating, there will likely be more people there than you expect.  It’s Disney.  You aren’t the only one who wants to be there.

Take advantage of the Fast Pass system to select the attractions you most want to see BEFORE you visit.  Fast Passes will give you guaranteed access to a few of your “must-do” attractions at a specific, pre-arranged time without standing in the regular line. If you want to experience some of the more popular attractions, the Fast Passes can save you lots of time and aggravation.  The Disney website will allow you to select your Fast Passes 30 days ahead of time if you are not staying on property or 60 days from the first day of your reservation if you are staying on property.  Because so many people do reserve their Fast Passes ahead of time, it may be pretty much useless to try to get a Fast Pass once you get there.  If you didn’t get a Fast Pass and want to do something, don’t despair.  You may still be able to get on the ride with a minimal wait, depending on the attraction and the timing of your visit.

Know Thyself

If you are not as spry as you once were (or if, like me, you were never that spry to begin with), understand that there is a lot of walking around the World.  Max still refers to our first trip to Disney World as the “forced march across central Florida.” You might want to go into training before your trip by walking a little more each day for about a month, just to give your body a jumpstart for the increased demands you will make on it.  Also, manage your own expectations.  Instead of thinking you are going to go gallivanting from one end of a park to the other and back again and zig zag all over it several times in order to experience everything, figure out ahead of time which three or four attractions are your absolute “must-dos.”   Set your mind to be happy if you get to at least enjoy those attractions.  Then, have a list of other attractions that interest you and experience those as you run across them.  It is likely that if you think to yourself, “I’ll come back to this after I do so and so (at the other end of the park),” you will wilt before “after” comes and won’t make it back.  Keep hydrated, even if that means you have to take more frequent restroom breaks.  When you feel like a rest, go ahead and sit down and enjoy the scenery.

If you have mobility challenges, think about renting a wheelchair or scooter.  You can rent them at the parks and at Disney Springs.  Often, you can get a wheelchair in the parking lot to use to get up to the gate where you can rent a scooter.  You can also check out medical supply rental companies in the Orlando area.  They may be less expensive than Disney and may be willing to bring the wheelchair or scooter to your hotel.  Even if you do not normally need a wheelchair or scooter, you might want to get one for the visit since you will likely be covering way more real estate than you normally do.  You are paying a lot of money to visit Disney and you want to enjoy it.  If a scooter or wheelchair will enhance that enjoyment and give you the freedom to experience things you might not otherwise be able to do, it may be a great investment.

Don’t “Should” All Over Yourself

Remember to enjoy the moment.  This is good advice, no matter what you are doing.  At Disney, though, it can be really easy to get caught up in concentrating on all the big events that you “should” be doing.  Yes, you are paying a ton of money to go.  Yes, you want to get maximum enjoyment out of the trip.  But how do you define “maximum enjoyment?”  Is it seeing every parade and fireworks show?  Is it going on all the newest roller coasters?  Or is it slowing down enough to see the less-popular treasures and experience the serendipity?  Some of my favorite moments in the World involve times when I just happened to catch an experience that I didn’t know about or plan- awakening Tinker Bell in a shop in the Magic Kingdom, seeing the Mickey’s Philharmagic 4-D show in its soft opening, hearing a cast member call me princess, watching small children (who weren’t my responsibility) dance to pre-show music at the Epcot pavilions, sitting on the beach near the hotel at night watching the lights of the Boardwalk across the lake. Maybe “maximum enjoyment” is going back to the resort and taking a nap in the middle of the day or walking around the hotel’s beautiful gardens.   Sure, have a plan and make sure you experience the attractions that are important to you.  But stop and smell the churros, too!

Enjoy your own brand of fun at Walt Disney World.  You earned it and you deserve it.  Remember, you don’t have to be a rugrat to love the Mouse!

So what are your thoughts?  Are you a Disney fan, too?  What tips do you have for enjoying Disney as an “experienced” child?  Please share your perspective by leaving a comment.  In the alternative, you can email me at

Have a magical day, as they say in the House of Mouse!

Terri 🙂