Archive for the ‘ Videos ’ Category

This summer I returned home for the first time in 6 years and had the pleasure of meeting Gilly Cannon, who just happens to live near my old neighborhood!  She is a family caregiver for her husband, mother, blogger and all around nice person who shares her story of living with Trigeminal Neuralgia (TN).  I have heard that a bride marries not only her fiancé, but her fiancé’s family as well.  In the same manner, chronic illness such as TN also impacts people other than the patient.  It’s a diagnosis with which a family must learn to live – and to come together to support each other.

Thank you, Gilly, for contributing this insightful post!










Bringing Comfort

Normally when you agree to take on a job, you have researched it, examined the job description, negotiated hours and pay, have some pre-job training and /or bring your expertise to your new position.


Hopefully you also have colleagues, vacations, in-service training and a salary, which you hope reflects your years of experience, expertise and job performance and how much your employer wants you.


In August 2011, I found myself in a job with none of those things – the job of caregiving for my husband


On my husband’s birthday – August 17th 2011 he broke the news to me that his trigeminal neuralgia, an incredibly painful, rare facial nerve disease, had returned. He had, unusually for him, kept this from me for two weeks. This meant he had been suffering in silence with harsh, electric, shock-like pain on the left side of his face since the beginning of August.


Jonny says now, he was partly in denial and desperately hoping the pain would go away on its own. I had been wondering why this normally affable, unflappable, reliable guy had been quite the opposite – short-tempered, unfocused and unpredictable. When I finally asked him what on earth was going on – he murmured,


” My pain is back and it’s bad.”


I felt a shadow of dread wrap itself around my heart and a thousand things went through my head. But my first thoughts were practical. I had practice as a caregiver before. I knew what to do. I needed to get Jonny to double his meds and contact the neurologist, who had been taking care of him since he was first diagnosed, 3 years earlier. I helped him make a plan.


I had put my caregiving hat back on.


For 4 weeks the regularly increased medication chased but never caught up with the TN pain. The side effects by mid-September were beginning to ratchet up and TN was ahead of any battle plan we had. I sensed that the TN was going to force us on a different path and I needed to be with Jonny at each new twist and turn. I gave up my paying job and launched into the job of full time caregiver.


Suddenly we were plunged into a whole new world. If medication didn’t work – surgery was the only option. We had to find a neurosurgeon who specialized in treating TN. Now my job was search and rescue – search for the right path, surgeon and surgery and rescue Jonny from the deep dark TN pain hole he was tumbling down.


The first part was easier than the second. Thanks to the internet and our geographical location we had access to one of the large hospitals that had a trigeminal neuralgia center.


The rescue part was more challenging. The only thing that was certain was that the TN was in control and we were not. Watching Jonny’s pain increase and side effects take hold meant I was losing my soul mate, as I knew him. The advocating, problem solving, out-of-the-box positive thinker characteristics needed to become a part of my job description instead of his.


I became the researcher, caretaker, health decision maker, advocate, juggler and nurse.


I realized that it’s not that you have no time for yourself, it’s just that you do not know what time you have.


You cannot make a schedule for someone with a sudden illness, to work their downturns into your routine. So you try to adapt and fit in with them. As a caregiver you respond to each need, each pain, each new crisis as it happens and everything else: your own doctor’s appointments, hobbies, social plans, projects, reading, get put aside.


Although there were many things I gave up, here are some things I did and here is what I learned.



Find your strength and follow your gut


I felt I had no choice but to let much of my routine and needs take a back seat, particularly as our family is internationally flung and we had school age children. As expats we do not have family close by who could be a consistent presence and physical support for us all or provide respite for me. Jonny, therefore, was depending on me alone. I found strength in the depth of friendships I didn’t know I had, to keep moving forward and a strong gut that guided me when experience was sorely lacking.


If you have (school age) children-keep them informed and involved in plans, changes and treatment.


In mid-September 2011, Jonny’s pain from trigeminal neuralgia was beating any attempts to control it. The children and I watched helplessly as he tried to breathe through these attacks.


I tried to protect our kids from Jonny’s pain. But kids are smart. They sense the unsaid and worry about the unexplained. So clarity about where Jonny was up to became a priority and we tried to keep them in the loop with the fast changing landscape. They came often to visit at the hospital when Jonny was admitted for 2 weeks. They googled trigeminal neuralgia and watched  brain surgeries on You Tube. They felt empowered in being able to support Jonny and me within their abilities.












Use an online community site to keep everyone updated and a schedule so that they know how they can help with meals /groceries/playdates etc.


As Jonny’s health deteriorated, the concern of our family and friends all over the world, increased. I wanted to keep everyone updated. But the onus of knowing their email addresses and making sure everyone was included, was on me. I was exhausted and overwhelmed with loving texts, calls, emails and visits and could not respond to each and every one. I also knew that brain surgery that had been set for a month later, needed to be moved forward as quickly as possible. With all this in mind, two days before Jonny was admitted to hospital for pain that had spiraled out of control, dear friends came over and helped me set up a page at Lotsahelpinghands.


Here, I could post an update of Jonny’s progress and it was up to our friends to sign up to receive them. They could also leave messages for us and see a schedule of errands that we created for the months ahead. The pressure was off me and many of our wonderful communities around the world who wanted to keep in touch and help, now had a way of doing so.


Research, Research, Research


We found reliable information on hospital.


We read clinical studies from the USA and Japan.


We joined support groups online. There are many people on these sites with access to resources, treatments, their stories and a huge amount of support. It’s really good to know you are not alone, particularly if the illness you are dealing with is not well known or easy to pronounce. Certainly, it is also reassuring to interact with people who know firsthand what the pain, struggles, setbacks and successes are really like.


The reality is that although no two caregiving situations are alike, caregivers have many of the same struggles. And since often nothing seems to go according to plan, it’s useful to know that following your instincts and finding a way to accept help does mean you have found ways to help yourself as well as the person for whom you are caregiving.


Gilly Cannon













About the author

“Gilly (pronounced Jilly) Cannon is an accomplished educator and counselor. Gilly received her degree in Mathematics and Education from the University of Cambridge in England and her certificate in counseling from The National Youth Agency in the UK…
During her educational career, Gilly has been a teacher, math coordinator, principal and founded and directed the learning support department at Carmel International School in Hong Kong.

Drawing on her professional and personal experiences and a British sense of humor, Gilly now focuses her posts on strategies that bring comfort to her readers in challenging times.  Her topics range from coping with serious illness and grief to dealing with family, parenting and educational difficulties. The blog has rapidly increased its readership and impact in the broader community and this has led Gilly to her current career as a writer.”

Blog:  Brainstorm

Twitter:  @bringingcomfort


The human spirit never ceases to amaze me!  The essence of compassion that moves us to action is one of the driving forces that turns a person into a family caregiver.  Without giving the situation a second thought, many family caregivers volunteer to take on the multitude of responsibilities that go along with taking care of someone.  Slowly but surely, new issues arise that need to be addressed: dispensing medications appropriately, health insurance coverage for certain procedures or treatments, the cause of new symptoms, when to call the doctor, special diets, which exercises are all right for your caree to do, etc.

Just as important are ways for both caregiver and caree to see beyond the medical condition.  No matter how dire a situation may be, we must maintain a sense of dignity and compassion.  A person is much more than his or her body.  Our being needs to be nurtured as well.

How can a family caregiver show kindness in a tangible way?  And how does one continue to do so long-term?














Author Elaine Wilkes gives caregivers “101 Awesome Things to Do for Someone Who’s Sick”  She graciously shared her eBook with me in an effort to help family caregivers think of ways to make their time with their loved ones more rewarding.  She provides “meaningful…proven suggestions that have helped or brightened someone’s life.”

I loved her eBook and all the creative ideas presented! From “stay[ing] in the now” to enjoy this very moment – sometimes, tomorrow is uncertain – to reminiscing with favorite songs to “adopt[ing] a Granny and Send[ing] Flowers, too,” the eBook is full of sweet and touching stories and tips to make caregiving days more pleasant.

The key is to help the care recipients feel like a person, not only like a patient.  Often, someone who will listen is all they want, a “friendly and familiar face amongst all that [hospital] sterility.”  Whenever possible, this can be achieved by bringing him or her some favorite pastimes. These could be video games for younger ones, movies or CD’s to while away the hours serenaded by some handsome crooner!  Using a laptop or other tech device, they could watch‘s thought provoking presentations or learn about a variety of topics like Humanities, Design, Business or Sports, among others, at  They could also stay in touch with family and friends using Facebook, Twitter or

The eBook offers many more great ideas to lighten up your caree’s spirit.  The magical thing about this is that your caregiving spirit soars, too!

I recommend Elaine Wilkes’ “101 Awesome Things to Do for Someone Who’s Sick” to all family caregivers and to all families.  You won’t run out of things to do for your loved ones, for sure!



About Elaine Wilkes

“Elaine has a Ph.D. in naturopathy (alternative medicine)-graduated with honors, a master’s degree in psychology and degrees in nutrition and communications. These all synergistically work together to help the body-mind-soul connection.”  Her eBook is the result of “wanting to do something to show we care, but many times we don’t know what.”


(Disclosure: Elaine Wilkes provided me with a copy of her eBook. The opinions expressed in this article are my own and believe that her book can help family caregivers make the most of their time with their loved ones.)


When an emergency arises, are you, patient or caregiver, prepared to visit the Emergency Room?



“a sudden, urgent, usually unexpected occurrence or occasion requiring immediate action.” (


By definition, an emergency steers us away from our routine and forces us to alter our anticipated course of action.  Can we count on our level-headed caregiving thinking then? How can patients prepare themselves for a visit to ER?

When my father suddenly told my mother one early morning that he needed to go to the hospital, my mother simply said, “Ok.”  She proceeded to get dressed, got her purse and headed out to the car on their driveway. Surely, the only thing on her mind was getting Dad to the ER as soon as possible – talk would have to come later.  Dad was having what turned out to be a 5-bypass heart attack.

When he again announced that he needed an ambulance at 12:30am while I was visiting my parents 20 years later, we knew better than to question him.  My mother and I gathered our purses and car keys, then we followed the ambulance to ER.  Mother and I talked about Dad’s hip pain worsening and hoping that the medical staff would find its cause, get rid of it and release him.  We talked about his recently diagnosed multiple myeloma and about his failing kidneys, but not about much else.  It was, by that time, after 1 am and we were running on adrenaline and coffee.

Upon being examined, my father was asked what medications he was taking, dosages, symptoms and a myriad other questions that Dad could mostly answer himself.  Mostly.  Dad had taken his health seriously after his heart attack and remarkably, maintained a sharp mind through medical emergencies.  None of us, however, remembered medication strengths very well, as he was taking about 14 pills per day then.  The ER staff would have to make do with our faulty memory.

Today, this scenario, as well as complications and dangers posed by giving the nurses inaccurate medical information, can be avoided by preparing ourselves for a visit to the ER before we actually have to go.  We can also have forms filled out, doctors (with their contact details) and medications listed, and other necessary information ready for the ER staff to better help the patient once he or she arrives at the hospital.


Dr. David Seaberg, President of the American College of Emergency Physicians (ACEP), has implemented a program to encourage families to prepare themselves before visiting ER.

In the event that the patient cannot provide a complete medical history, arrives unconscious, or is unavailable when a child needs treatment, the forms below can be found in the website and filled out prior to arriving at ER.

“These forms are here to help you get the care you need in a life-threatening situation.”

  • Cell phone identification
  • Consent to treat form
  • Emergency health info for children with special health needs form
  • Medical history form


Cell Phone Identification  –  ICE

“ACEP recommends that people with cellular phones add “ICE” (In Case of Emergency) entries into their cell phone address books. This stands for “In Case of Emergency.” Medical professionals recognize this acronym and use it to notify the person’s emergency contacts and to obtain critical medical information if a patient arrives at an emergency department unconscious or unable to answer questions. This can give doctors and nurses vital information to provide better and more effective care.

It is recommended that people save at least two numbers and be sure that both people are familiar with their medical history. They can be saved as “ICE — 1” and “ICE — 2” or with names such as “ICE —  Mom.” In all cases, the “ICE” designation should come first.” has additional information on what to expect once you arrive at ER, which can calm your nerves and reduce worry.  Information includes:

  • Where you should go
  • Check-in
  • Medical tests
  • Admission to the hospital
  • ER checklists



Dr. Seaberg answers some questions on preparing for a visit to ER in a video below.



Do take time to fill out the forms listed above and enter your ICE into your cell phone today.  Better to be ready for anything – we just cannot predict when those emergencies will make an appearance.

Be prepared before you go to ER!


A bouquet of inspiration for you!

Each day brings with it the opportunity to build on yesterday’s endeavors and to embark on new adventures. Seize the possibility of the new dawn to fill your sails, let it steer you toward your goals with conviction and affirmation that your efforts can bear fruit.  Actions start with the belief that you can!

Morning is, for me, a great big present wrapped in colorful paper with a perky huge satin bow on top – a surprise waiting for me, a gift of new beginnings where anything is possible!  I have changed my perspective on it, moving from trying to sleep one more minute to trying to wake up and to live my day.  It makes a big difference and is easily done when I visualize my large mug of hot coffee! Mmm… With a cup of strong brew in hand, I am motivated and ready for whatever comes my way!



A wonderful day begins!

A wonderful day begins!












I love the peace and quiet that reigns over our home while my family sleeps, and the dark sky as it gives way to hints of pink and gold on the horizon.  I play hide-and-seek with the plantation shutters on my kitchen windows, trying to catch that elusive sunrise. My routine begins and the day always promises to keep me busy.  Along the way, I feel gratitude and find inspiration in the little things, in my surroundings, and in the most unexpected places!



Coffee: the way to start a great day!

Coffee: the way to start a great day!












Because things are usually better shared, I’ve gathered below bits and pieces that motivate me in the early hours and keep me going throughout the day.  I leave you a bouquet of inspiration!

Have a wonderful day!



Wildflowers in the morning

Wildflowers in the morning












Edvard Grieg’s Morning

Relaxing Sounds – Spring Morning

In the Morning Light ~ Yanni



Morning Prayer  ~  Anonymous

Thank You, Lord, for this day.

May Your will guide my way.

Lift me up when I fall down.

Let Your love in me abound.



Oh, What a Beautiful Morning! ~ Oklahoma!

My Girl ~ The Temptations

Morning has Broken ~ Cat Stevens

Jolly Holiday ~ Mary Poppins

A Beautiful Morning ~ The Rascals



“If you think you can do it, you can.”   ~  John Burroughs


“All we have to decide is what to do with the time that is given to us.”        ~  J.R.R. Tolkien


“I have seen what a laugh can do. It can transform almost unbearable tears into something bearable, even hopeful.”    ~  Bob Hope


“You desire to know the art of living, my friend? It is contained in one phrase: make use of suffering.”           ~  Henri Frederic Amiel


“All’s well that ends well.”                    ~  William Shakespeare



At the end of a meaningful day, a meaningful ending:

Night Prayer  ~  Anonymous

Every day in every way,

Jesus, rule my heart

In what I do and say.

Every night

Help me find Your light.

Jesus, be my peace.

Let me rest in Thee.


The links below bring caregivers medical resources and health information to keep up with the latest news and developments.  They also render a place to meet and to exchange ideas with other caregivers and patients – people who understand your circumstances and who can provide welcome support!




SCPharmacist – trusted healthcare resources, prescription drug savings tlps

Health Alerts / Advisories – alerts, health info, research

Health Canal – medical news

Dana – brain research & information

Vascular Web – Podcasts, resources, research for patients, families, students & professionals

DrAnnBeckerSchutte – tools for emotional, physical health

Spina Bifida Association of GA – support to live more fulfilling life

Let Life Happen – cancer & abuse survivor bringing hope

Ability4Life – caring for aging parents: products & information

Best-Endings App – preparing for our end-of-life

Best-Endings – planning now for our end-of-life

Stardust Ashes – scatters loved one’s ashes into stratosphere


COMMUNITY & SUPPORT: find other caregivers, families, patients

Ben’s Friends  – support & information, communities of people with rare diseases

The Coffee Klatch – support & education for families of special needs children

Seize the Days – celebrating cancer patient survival life with inspirational stories

Inspire – online health & wellness communities for patients & caregivers

Groups@Care – join / form groups with similar interests



La Via Sana – support for people dealing with mental illness

Soma Vida – work / life balance, wellness

Judy Kegg at Floating LotusWatsu & massage therapies

Hill Country Healing Arts – Watsu & massage therapies

Cure for Space – uncluttering & organizing homes


Passing along lots of useful links that can help your caregiving!  Please browse the lists below and visit the websites to find plenty of good resources, tips and inspiration to make your day more manageable.



Inspire – online health & wellness communities for patients & caregivers

Groups@Care – join / form groups with similar interests

Caregiver Stress – caregiving topics, expert advice, self-care

Laughing with Mary Maxwell – humor, quick wit about life

Mary Ann Liebert Publishers – information on science, technology, medicine

Arleen Alleman – author, fiction




aQuire Training Solutions – online training courses, Alz & memory care training courses

Wheelmap – map of wheelchair accessibility around the world

Care Conscious – Educating, preparing family caregivers




Rankings & Research – rates hospitals, nursing homes, health plans, diets, doctors – national clearinghouse

Home Care Generations – home care help in Phoenix, AZ

Golden Touch Caregivers – non-medical home care

Ethos – coordination, delivery of home & community-based care

Visiting Nurse Service of NY – home health care services in NY

Brooke’s Home Care – non-medical home care; Ontario, Canada

Community Connections TimeBank – share talents to help others, get favor back in return, free

Easier Living – medical products, services for home, tips

The Easier Living Blog – help manage day to day

Elders Resource LLC – help with Medicare, locating benefits, filling out forms

CarePlanners – navigate healthcare system, coordinating care for self & family; understand Medicare, insurance, diagnosis

Chamber of Hope – free Oxygen (mHBOT) for sick children, Tampa Bay, FL

AAHCP – directory of doctors who make house calls


Happy Birthday, Hubby Dearest!

Today is my husband’s birthday!  Time really does fly!  It seems like just the other day, we met at the University of Maryland.  Go Terps!  That was the year that I had decided to focus strictly on my studies so that I could graduate remotely on time.  I was already a junior and had not yet declared a major – too many things that I wanted to learn made it impossible to choose only one career path!  That was the year that he changed all my plans.

Because life gave me the triple role of wife, mother and caregiver, which is not at all what we ever imagined, we tend to get more creative for our celebrations.  Gone are dinners at a 5-star restaurant, a show at the theater or a party.  (Thank Goodness we’ve done them all.)  Instead, we bring the “entertainment” home. Gone, too, are the “normal” gifts such as his favorite Polo shirts or any other clothes, paper books, games, art or anything else that he has to handle.  My husband’s CRPS is the culprit. What this chronic illness has done is to force us to re-evaluate our definition of “important”.  And what are, and always have been, important to us are family, friendship, respect and appreciation of each other, and gratitude for the blessings that we do have.

This year, part of hubby’s present is this blog.  I am proud to be his wife of over 30 years and I am the luckiest person on Earth for having a loving, loyal, devoted husband and friend with whom to share my life.  I admire his intelligence and wit, his integrity, his passion for education and for doing what is right, even his sense of humor; but mostly, I admire his kindness and strength. Throughout all of our life together, he has stood beside me as my husband, friend and caregiver.  Through challenging times, he lifted me and carried me until the light at the end of the tunnel was in sight. Through the ordeal of CRPS for the past 4 years, the bitter icing on the cake after losing my beloved father and dear grandmother, he has maintained a level head, and managed to care and to provide for his family despite his disability and pain.  He is to me, an extraordinary man!


So Happy Birthday, Hubby Dearest!  

Thanks for the memories!


Below are some songs that we can hum to as we celebrate (I’ve been banned from singing by my family):

Route 66

Take the ‘A’ Train

Black Dog

Stairway to Heaven



Some of his favorite things:

























































































































I always say that my husband looks like he’s a lazy bum, lounging in his recliner all day long with food, nibbles, refreshment, iPad2, laptop, TV- & Blue Ray-player remotes, laptop and iPhone within reach…and with me bringing him whatever he needs.  Oh yes, and with his clear plastic compartmentalized box containing the 22 pills that he needs to take every day.  We can thank CRPS for that.  As my mother says, you’d never believe that there is anything wrong with him from looking at his face.  He smiles, laughs even, jokes and is still a great conversationalist on just about any topic.  He’s the genius in our household (well, we all think we’re pretty smart, but we defer to him on account that he’s the one with a PhD in Economics), the renegade researcher, the guru of humor and king of trivia.  He gave up his Ministry of Silly Walks when he lost the use of his right foot.

Aim your eyes at his feet, his legs or his arms, and you’ll see that the rosy picture ends there.  His right foot is limp and forever en pointe: he has not been able to move it in 3 1/2 years.  His forearms, feet and shins are covered in flaky skin that thickens and eventually falls off in crunchy pieces – no need for birdseed to leave a trail.  His right calf is half of its original healthy size: the muscle has atrophied.  And if you pay attention, you’ll notice the grimaces and soft breaths that escape as he painfully places his plate on the table beside him or picks up his soda.  You would definitely believe that he is not a well man!  This is the side that the pictures don’t show.

Because so little is known about CRPS, my husband and I expect that his condition won’t disappear anytime soon.  We hope and pray.  Until a miracle happens, we deal with his relentless pain and diminishing abilities best through humor.  It is one of the few things that CRPS has not taken away from him.  That is a blessing!  And if he can laugh being in such pain, then so can we.

These are some of the things that he enjoys.  Maybe they will help you set aside your caregiving – or other burdens – and bring you a bit of joy for a little while.


By the way,, is accepting contributions of funny stories for their next CareGifters book.  Deadline is March 23, 2012.  Sales help raise $500 to give to family caregivers so that they may resolve 1 or more challenges.

Please click Call for Submissions for more information.



Monty Python’s Ministry of Silly Walks

Monty Python’s The Parrot Sketch

The Maturity Climb

Owner Tells Talking Dog What He Ate & Didn’t Share

Metaphors from NSW Year 12 English Essays

Murphy’s Law Site

Why Parents Get Gray Hair

Anti Jokes


Are you maximizing your car?

Are you maximizing your car?










Saul Epstein was taking an oral exam in his English as a Second Language
He was asked to spell “cultivate,” and he spelled it correctly. He was then
asked to use the word in a sentence, and, with a big smile, responded:
“Last vinter on a very cold day, I vas vaiting for a bus, but it vas too
cultivate, so I took the subvay home.”


Two Jews, Morty and Saul, are out one afternoon on a lake when their boat
starts sinking. Saul says to Morty, “So listen, Morty, you know I don’t swim
so well.” Morty remembers how to carry another swimmer from his lifeguard
class when he was just a kid, so he begins tugging Saul toward shore. After
ten minutes, he begins to tire. Finally about 100 feet from shore, Morty
asks Saul, “So Saul, do you suppose you could float alone?” Saul replies,
“Morty, this is a h— of a time to be asking for money!”


Moishe is driving in Jerusalem. He’s late for a meeting, he’s looking
for a parking place, and can’t find one.
In desperation, he turns towards heaven and says: “Lord, if you find me
a parking place, I promise that I’ll eat only kosher, respect Shabbos,
and all the holidays.”
Miraculously, a place opens up just in front of him. He turns his face
up to heaven and says, “Never mind, I just found one!”


It was mealtime during a flight on El-Al.
“Would you like dinner?” the flight attendant asked Moishe, seated in front.
“What are my choices?” Moishe asked.
“Yes or no,” she replied.


A visitor to Israel attended a recital and concert at the Moscovitz
Auditorium. He was quite impressed with the architecture and the
He inquired of the tour guide, “Is this magnificent auditorium named after
Chaim Moscovitz, the famous Talmudic scholar?” “No,” replied the guide.
“It is named after Sam Moscovitz, the writer.”
“Never heard of him. What did he write?”
“A check”, replied the guide.


A woman goes to the post office to buy stamps for her Chanukah cards. She
says to the clerk “May I have 50 Chanukah stamps please.”
“What denomination?” says the clerk.
The woman says “Oy vey…my g–, has it come to this?
Okay, give me 6 orthodox, 12 conservative and 32 reform!”


I am going to the theater tonight! Our daughter and her high school theater company has worked very hard to put on “Phantom of the Opera” and Opening Night is tonight.  I know it will be a fabulous show because the collective talent that the students have is enviable.  Of course, this wouldn’t be possible without the 2 amazing directors, tech director, choir teachers and band director, who challenge, guide and inspire these young actors and singers.  Nor would they be able to perform without the skills of the technicians, art students, band, orchestra, dancers and everyone else involved in the production of the show.  They comprise a team of over 100 people, all working together for the sole purpose of bringing something beautiful to their audience!

(Wouldn’t it be lover-ly if families came together as such for caregiving, for each other?)

My husband will be home, hopefully sleeping, during the performance.  Not because he doesn’t want to go, but because he cannot: CRPS has rendered him disabled and homebound.  However, we have devised a way to do the things we like to do, a new way that works for us.  Our daughter’s biggest fan, my husband will be there in spirit, with me, her other biggest fan.  He will see the show when it’s on DVD, just like he “attends” all of her shows nowadays.  Until then, we will relive and savor every moment, every note of wonderful music when she comes home from the show.

So tonight, I take some time for a diversion that I love.  I’ll feast my eyes with majestic costumes and my ears with glorious melodies.  Tonight, I’ll mend the worn edges of my caregiver hat and emerge renewed!


I hope you enjoy the music & videos of “Phantom of the Opera” below:

Music of the Night

Think of Me

All I Ask of You


Disability: blending in better?

When I need to stop thinking about caregiving, I sometimes turn on the television to see what can distract me for a while.  I find myself reading an awful lot about coping, managing, cooking, health, benefits, news, research…so seeing pictures instead of words is a welcome change for my brain.

Flicking through the channels one evening last year, I caught an ad for a new show: Switched at Birth, which immediately caught my attention.  One of the main characters was deaf!  I found this exciting, as not too many shows or movies feature persons with any sort of disabilities.

When I mentioned this observation to my daughter, she informed me of another show that is popular among students in high school: The Secret Life of the American Teenager.  In that show, Luke Zimmerman, who has Down’s Syndrome, plays the role of Tom Bowman.

Yet another popular show is Glee.  You guessed it: Artie Abrams uses a wheelchair and cheerleader Becky has another disability!  In total, 6 characters in 3 shows playing over 3 consecutive days portray persons with disabilities.  What I found wonderful was that their characters all blend in with the cast and story seamlessly.  I have heard no mention of impairment or inability to carry out any task.  What I have seen is everyone going on about their business, normally.

Is this a reflection of how the younger generations view disabilities today?  How about adults?

I hope so!

I found it especially wonderful that in the shows, these characters were seen solely as friends; as they should be!  Everyone had the same issues as anyone else – falling in love, falling out of love, self-confidence, rivalries, going after your dreams, defining oneself and all of the teen angst-invincibility-sensitivity that comes with that age.  I watched the shows and got into the stories without distraction of any disabilities.  They were all simply people!


The Fight to Work

Attorney General of Texas Greg Abbott

Glee’s Kevin McHale

Switched at Birth

The Secret Life of the American Teenagers’ Luke Zimmerman