Tuesday, December 23, 2014

"Different Kind of Christmas" by Mark Schultz

A friend passed this beautiful song onto a few people that have lost loved ones this year. 
It's perfectly written and his voice is incredible.



Snow is falling Christmas Eve
Lights are coming on up and down the street
The sound of carols fills the air
And people rushing home, families everywhere

Putting candles in the windows
Lights upon the tree
But there's no laughter in this house 
Not like there used to be
There's just a million little memories 
That remind me you're not here
It's just a different kind of Christmas this year

In the evening fires glow 
Dancing underneath the mistletoe
A letter left from Santa Claus
Won't be the same this year in this house because

There's one less place set at the table
One less gift under the tree
And a brand new way to take their place inside of me
I'm unwrapping all these memories
Fighting back the tears
It's just a different kind of Christmas this year

There's voices in the driveway
Families right outside the door
And we'll try to make this Christmas like the ones we've had before
As we gather round the table, I see joy on every face
And I realize what's still alive is the legacy you made

It's time to put the candles in the windows, the lights upon the tree
It's time to fill this house with laughter like it used to be
Just because you're up in heaven, doesn't mean you're not near
It's just a different kind of Christmas
It's just a different kind of Christmas this year



I Am Always With You ... read by Paula Brewster

I Am Always With You

I am always with you
When I am gone, release me, let me go.
I have so many things to see and do,
You mustn't tie yourself to me with too many tears,
But be thankful we had so many good years.
I gave you my love, and you can only guess
How much you've given me in happiness.
I thank you for the love that you have shown,
But now it is time I traveled on alone.
So grieve for me a while, if grieve you must
Then let your grief be comforted by trust
That it is only for a while that we must part,
So treasure the memories within your heart.
I won't be far away for life goes on.
And if you need me, call and I will come.
Though you can't see or touch me, I will be near
And if you listen with your heart, you'll hear
All my love around you soft and clear
And then, when you come this way alone,
I'll greet you with a smile and a "Welcome Home".


Author Unknown

On Joy and Sorrow ... read by Cael Kavitz

On Joy and Sorrow
from The Prophet
Kahlil Gibran


Then a woman said, "Speak to us of Joy and Sorrow." 
      And he answered: 
      Your joy is your sorrow unmasked. 
      And the selfsame well from which your laughter rises was oftentimes filled with your tears. 
      And how else can it be? 
      The deeper that sorrow carves into your being, the more joy you can contain. 
      Is not the cup that hold your wine the very cup that was burned in the potter's oven? 
      And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
      When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. 
      When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight. 
      Some of you say, "Joy is greater than sorrow," and others say, "Nay, sorrow is the greater." 
      But I say unto you, they are inseparable. 
      Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed. 
      Verily you are suspended like scales between your sorrow and your joy.
      Only when you are empty are you at standstill and balanced. 
      When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall. 

Eulogy for Robin's Service

Top 10 Things We Love About Robin

10:  Her Smile.  She could light up a room with her wide, joyful smile.  With her beautiful smile and contagious laugh, Robin always let you know the joy she felt in being with you.  We all know how important her teeth were to her, and the lengths she went to get it JUST RIGHT.   When she got her teeth done, the dentist asked her what shade of white she wanted and she said, “THE WHITEST WHITE” which happened to be called “Hollywood White” and she got her wish. During her battle with FTD, she flashed us that smile often to let us know she was happy we were there. 

9:  She was an avid Vikings fan.  She may not have always understood every football play, but you could always count on her to be dressed in dazzling purple and gold on game day.   When mom took me to games as a kid, we used to have a secret sign that let me know when to start crying so mom could tell the ticket scalper, “I just wanted to take my daughter to the Vikings game!”  It worked like a charm.

8:  Presents!!  Whether it was your birthday (which she never forgot), your baby was just born, Christmas, or any other occasion, Robin loved to spoil people with incredible gifts.  Not only did she seem to know just what you wanted, she would wrap them so beautifully that you would hesitate to open them.  During our huge family Christmases at Grandma Donna’s house, you could always tell which presents Robin brought, because they would all have gorgeous paper and elaborate bows.

7. Her personal style. Robin was always dressed to the nines, head to toe. She was a TJ Maxx expert shopper, finding the most flattering fashionable outfits, accessorizing with a coveted purse, all the bling one can wear, and of course 6 inch heels. She was meticulous in her morning routine – every brush of makeup, line of her brow, stroke of lipstick, curl of her hair were just so. She was known for beautiful nails and long eyelashes. She didn’t miss a beat. Even as my Mom passed away, Team Robin honored her beauty. I applied a beautiful glimmering bronzer, a touch of rouge, creamy eyeshadow, a hint of mascara, and sparkly pink lips. Mama Yoder brushed her hair ever so gently, Paula lined her brows for the last time, Amber adorned her in a perfect nightie, and Lexi topped it off with a perfectly pink manicure.

6:  Her Ambition:  Throughout her life, Robin set high standards for herself.  Whether she was editing the newspaper ads, staging a home for an open house, or pulling off an elaborate party, nothing was impossible with her effort behind it.  Raising Ashley was at the top of the list most recently, and Ashley’s college graduation was the proudest I have ever seen Robin.  She wanted Ashley to have every opportunity in life, and worked tirelessly to give her all the tools she needed to follow her dreams.

5:  Travel. Mom didn’t just talk about traveling the world someday, she did it.  She took me to Puerto Vallarta Mexico over ten times for spring break, soaking in the culture and food, and always letting me bring a friend so that I was busy and not bothering her bronzing hours.  She loved the sun and hot weather, so Palm Springs was a favorite destination where she could get a tan, sip margaritas, flip homes and enjoy friends.   Her plan was to eventually retire there.   New York was another destination for shopping and big city attractions.  Before I arrived, she hit Las Vegas to play in billiards tournaments. Eventually Vegas became an annual getaway with her dear friend Char (and often myself and friend Lynsie), taking in shows, playing blackjack at Casino Royale, and ponying up at Toby Keith’s bar.   Then, there was Europe.  Madrid, Budapest, Milan, and then on New Year’s Eve, Paris.  She especially loved Paris – the grandeur, the food, the art, the Moulin rouge, the Eiffel tower.    Her physical remains will be returned to Paris, but her final trip will be to heaven.

4:  Food – Robin loved food, restaurants and gathering for meals.  Though Robin didn’t cook much but hobo dinners, she did love to bring dazzling dishes to share.  With a little prodding, you’d find out these came from her favorite restaurants.  Dining out was one of Robin’s favorite activities, and she never shied away from taking kids along, buying dessert, and ordering the spiciest thing on the menu.  She carried crushed red pepper in her purse and would put it on anything from cream cheese wontons to pizza and if you could put it on breakfast cereal, she would have. Though experiencing food was part of what Robin loved, sitting with you across the table is what she loved the most.   

3:  Her confidence:  Anyone who is already 5 foot 10 without heels, but still straps on 5 more inches of height – has CONFIDENCE.  Never intimidated by anyone or anything, she faced her life, challenges and errands with a sense of purpose.   And if you asked her, don’t your feet hurt in those shoes, she would simply say with a smile that “no they are actually comfortable”. 

2:  Christmas – It doesn’t feel like a coincidence that my Mama left for heaven on St. Nicholas Day, the beginning of her favorite time of year.  She loved the tradition and festive atmosphere of Christmas.  She could turn anything from ordinary to extraordinary in a home – especially during the holiday season.  People would eventually come to tour several homes decorated, including four of her own, for the Hudson Christmas Tour of Homes.  For those of you who might like some of Robin’s style to show off in your home this Christmas, here are some tips she gave:
-use a fake tree – build it from the bottom up one level at a time
            -lights – go ahead blow a fuse or two with how many Mom used
            -more ornaments than you thought possible – small and dainty to obnoxiously large
-no tree topper – she found whimsical feathers and glittery branches to stuff at the top, much like Queen Elizabeth’s hats
            -fishing line to attach it to the wall as the tree was inevitably going to fall over

The number one thing we love about Robin is Ashley.   Watching the love, tender compassion and relentless effort that Ashley poured into her mother’s battle was not only a testament to the way Robin raised her daughter, but felt to all who witnessed it, a living illustration of God’s love.  With love pouring out of her eyes, we watched Ashley massage her mom’s face, gently apply lipstick, and kiss her all over.  She worked late into the night, researching and reading, grasping for all tools and information that might help make Robin’s journey better in any way.  She spent her days on the phone with doctors, insurance companies, and family members, seeking help, care and comfort for Robin.   In Ashley, you see Robin’s smile, Robin’s style, Robin’s confidence, Robin’s love for travel and adventure, Robin’s love for her family.  Her spirit lives on in Ashley and she will be smiling in pride as she watches over her in the days to come. 




Friday, December 19, 2014

Robin's Birthday!

59 Years Young



The start of her Birthday Month:






Robin's Birthday Party!


Tuesday, December 9, 2014


With immense heartache and yet some peace, my Momma Robin Kavitzpassed away. Surrounded by her family and dearest friends, she put the battle against FTD and ALS to rest. She chose a sunny afternoon on St Nicholas Day ... how very fitting. I can only imagine the beautiful dress, fancy high heels and glass of wine she has chosen in heaven.




Robin Kavitz, 59

Died Dec. 6, 2014

Robin Kavitz, 59, of Hudson, passed away Saturday, Dec. 6, surrounded by her family and dearest friends as she put her battle against FTD and ALS to rest. Her loving daughter Ashley said Robin chose the perfect moment for her journey to heaven. She was dressed in pajamas covered with glasses of red wine on a sunny St. Nicholas Day, the beginning of her favorite holiday season.

Robin was born and raised in Owatonna, Minn., by her parents Marvin and Donna Kavitz. She grew up on the family farm, one of five children. She graduated from Medford High School in 1973.

Robin began a career in advertising at the Owatonna People's Press before moving onto Mankato and finally to Hudson where she served as the advertising director for the Hudson Star Observer for 10 years. Leaving advertising behind, Robin became a popular local realtor with a reputation for her innate sense of style and design. She was a successful member of the Hudson business community for close to 25 years.

Robin had a well-deserved reputation for making the ordinary extraordinary, all while wearing very high heels. She was always providing homeowners with decorating help including providing her own home furnishings and ornaments from her extravagant Christmas trees.

Robin was never happier than when she was traveling the world with Ashley, her family or any of her many good friends. She was an avid fan of the heat in Palm Springs, Calif., the dazzling life in Las Vegas and the grandeur of Paris.

Ashley knows her mother is now staging a fabulous white party in heaven wearing a beautiful dress, fancy high heels and sipping a glass of wine with her beloved nephew Chad Jones, her good friend Brett Weller, her father Marvin Kavitz, uncle Tony Kavitz and aunt Dortha Kavitz.

She is survived by her daughter Ashley and constant supporter Nicholas Yoder, mother Donna Kavitz and siblings Paul Kavitz, Dale (Jeannie) Kavitz, Dolly Jones, and Todd (Camille) Kavitz as well as many nieces and nephews, cousins and friends around the world.

A memorial service will be held at 5 p.m. Saturday, Dec. 13, at Faith Community Church, 777 Carmichael Road, Hudson, followed immediately by a celebration of Robin's life at Stone Tap Gastropub, 517 Second St., Hudson.


In lieu of flowers, memorials preferred to the family.

Tuesday, December 2, 2014

Hospice

When I heard hospice, I just heard white noise in my mind. I didn't know what it was and I didn't want to know. But it's a reality of mine and was the topic of conversation lately with Mom's Doctor and Nurses. 

So just like the others steps of this journey it was time to do research, lean on other's experiences, understand the pros and cons, the financials, ask Paula to do her research, decide where and how, and then accept that this moment would come.

So what is hospice:
"When medical care cannot offer a cure, hospice provides care, comfort and support for persons with life-limiting conditions as well as their families. The hospice team works to make the person comfortable and relive their symptoms and pain for the entire length of their illness."

CARE and COMFORT ... well, that's exactly what my Mom needs.

The decision of when, where and how my Mom would receive this hospice care did not come easily. There was some denial in the process as I now understood what it meant. Yes there is no cure for FTD and yes Mom passing is imminent. 

Over the course of the past 2-3 weeks she was declining more noticeably, her discomfort was obvious and her smiles were few and far between. I approached her Doctor about some possible medication changes last week and his response was that of concern - that hospice was needed soon. I thought, I'll put it off until after the Thanksgiving holiday, soak up the family time and think about it more. 

Friday morning after Thanksgiving, she had a fall. Although no major injury and she appeared to be ok, it was another sign. I chose one of the many highly recommended options and specifically one her Doctor works with, St. Croix Hospice. I met a Casework/RN Sunday afternoon for their assessment and since then her hospice team has all been over to meet Mom. 

It's absolutely true what I've heard about hospice - their truly compassionate hearts bring serenity and peace to the journey. I'm already anxious to spend more time with each of them, soak up their gentle manners, and teach them more about my Mom, because I know they care.

Moving forward, Team Robin's focus is on comfort and happiness. Every one of you in her lives can bring her this ... if ever there was a time to see Robin, it's now, as she is still with us.

I'll offer again that if anyone wants to visit at ANY time, please reach out to me. I'd be happy to give you advice, accompany you, or arrange a small group to visit. She welcomes visitors, will remember each of you, and you might get a beautiful Robin smile out of it!

xoxo,
Ashley & Team

Ashley.Kavitz@gmail.com

truly failing healthcare system

I am not one to rant about our political system and all its flaws or successes. Having lived abroad twice, the USA is really superior to many governments out there. I keep my mouth shut and appreciate what we do have working and hoping some mastermind like a Steve Jobs or a Google Exec will take over and run it like a Fortune 500 company.

With that being said I will speak from personal experience about our truly flawed health care system. I don't have the answers on how to make it perfect but I can say for certain it is beyond confusing. Since Mom's health issues began, navigating Doctors, insurance and benefits have single-handedly been the most difficult part. The hours spent trying to just understand the resources available have taken from my precious time with Mom.

Some of you have offered help, advice, knowledge, and assistance. So here's the update...

-Social Security Disability Insurance (SSDI) - Robin was determined "disabled" under a compassionate care allowance due to the nature of her disease. They backdated to November 2012 and she was paid benefits starting 5 months later. The amount is based off of what she has contributed in her lifetime of working and paying taxes - with no regard to her rapidly progressing disease.

-Medicare - Federal benefit to supplement medical insurance - Robin is not immediately eligible because she is under 65, so there is a 2 yr + 5 mo waiting period from determination of SSDI. Therefore April 2015 she would be eligible ... to apply.

-Medicaid - MN State benefit to supplement medical insurance - Robin is not eligible for this until there is very little money in her name and her income is minimal. Her income is only from SSDI and goes straight to her care facility costs.

-MN Sure - Minnesota's version of ObamaCare ... it could be called many awful names but I'll keep it PC for now. Most anyone is eligible to use MN Sure but how much the state will help subsidize varies person to person, mostly based on income.

I went through the first year of MN Sure in early 2014 and the site was terrifyingly confusing - so much so that I accidentally purchased her a PPO but only with Allina Network - not sure how they can define it that way. So all of her medical expenses this year have been "out of network" with a very high price tag deductible of $10,000.

Now I'm in the process of purchasing her insurance for 2015 ... I filled out the application on day 1 and it's still processing 2+ weeks later ... meaning I can't enroll her in a plan until the application is processed. Besides that, getting logged into their site that crashes multiple times while using, navigating the numerous plan options, and really understanding what's best for her short term needs is a nightmare.

I work with benefits in my job, am educated on ObamaCare through trainings, and yet still feel completely incompetent in the entire system. Enough of my ranting ... if anyone ever needs assistance with the above mentioned, I'm willing to share my knowledge over a glass of wine or strong coffee.




Sleepover!

Pictures from an October sleepover. First time in quite a few months we brought Robin out of the Alton for an overnight sleepover. It went fairly well after she was situated.







Friday, October 3, 2014

Join us for the Remarkable Robin Benefit October 16th!





Sunday, September 21, 2014

Walk to Defeat ALS

We've all seen the Ice Bucket Challenge that swept the country this summer in response to raising awareness for ALS. I was inspired and touched as my Mom suffers from the disease and decided to take it one step further ... create a Team Robin for the ALS walk. 

Our team raised $1,070 and had 8 walkers the day of. $490,000 was raised by the Twin Cities walk - a huge record!






precious moments

This weekend we were so lucky to have Robin's oldest niece Sheila in town from Phoenix. She was Robin's favorite as a child and watched me grow up. Sheila and I have a unique connection in that we both moved far away from family at a young age and both lived in Europe. We share in those stories and also struggles of how difficult it is to be far from home. So grateful Sheila make it home for the weekend.

Saturday we spent the afternoon giving Robin a spa day! Bath including shaving her stick legs, a good facial, manicure and pedicure, lotion rub down and of course eyebrows.

Here are the moments captured...








Wednesday, September 17, 2014

yum protein shakes


Since Robin has struggled more and more with eating enough, I started making her protein shakes filled with healthy nutrients, fruits, proteins and fats. She absolutely loves them and eats until the cup is empty. So glad we found something she can enjoy!




Tuesday, September 16, 2014




Please spread the word about the Remarkable Robin Benefit!




Tuesday, September 2, 2014

4 shirts


At dinner tonight with Robin, I realized she was wearing not one, not two, but 4 shirts! It's slowly progressed to wearing an excess of shirts. While a year ago this might have made me frustrated and crazy, I now just realize "it is what it is" and laughed it off. Where and how the brain disconnected ... I don't know nor is it important. Find joy and humor in the small things! 

Friday, August 15, 2014

Hudson Star Observer story by Meg Heaton

Thank you Meg Heaton, journalist at Hudson Star Observer, for your beautiful article on Robin and the FTD Disease. Your long time friendship has been such a blessing to us both and now your words truly exemplify where our life is today.

Click the link to read the article:


Thursday, August 14, 2014

dysphagia ... what it is

A symptom of FTD and ALS is the atrophy of muscles and especially within the throat area. This leads to difficulty swallowing which is called Dysphagia.

Here are some facts from Mayo Clinic on the disease:
-"Difficulty swallowing (dysphagia) means it takes more time and effort to move food or liquid from your mouth to your stomach. Difficulty swallowing may also be associated with pain. In some cases, you may not be able to swallow at all."

-"It takes about 50 pairs of muscles and nerves to accomplish the simple act of swallowing, and a number of conditions can interfere with this process."

-"Difficulty swallowing can lead to:
  • Malnutrition and dehydration. Dysphagia can make it difficult for you to take in enough food and fluids to stay adequately nourished and hydrated. People with difficulty swallowing are at risk of malnutrition and dehydration.
  • Respiratory problems. If food or liquid enters your airway (aspiration) as you attempt to swallow, respiratory problems or infections can occur, such as frequent bouts of pneumonia or upper respiratory infections."
Robin's Dysphagia symptom has really progressed in the past few weeks. We are having speech therapy evaluations to determine her diet and what is best for her nutrition. She is consuming only thickened liquids (has been for some time) and all pureed foods. This part of the disease is truly scary because she is not eating nearly as much and not receiving the nutrition need to help her immune system. We pray for a solution to get her the nutrients needed.

Tuesday, August 5, 2014

motherly instinct

Today was a bad day in the book of Robin. She didn't take her morning dose of meds which threw her off for the entire day and spiraling downwards. She was combative, aggressive, weeping tears and not eating. I arrived after work, was able to feed her meds, shower her, curl hair, mini pedicure, brush teeth, and then bring to her the National Night Out Party. 

The Alton was hosting a great front lawn party with music, dancing, food and fun. Robin stayed for quite some time onlooking the music and young kids dancing.

After a while we came back inside to settle Robin in. She sat on the couch and I sat next to her. As I am completely exhausted, I naturally laid my head on her lap. She gave me the motherly touch of stroking my hair and brushing it back, tickling my shoulder, and squeezing my hand. It was perfection. 


Wednesday, July 30, 2014

a few old pictures...




  



Robin and Sister Dolly + Elissa and Tony

musical cards

Music is therapeutic. They say it's great for people with dementias or cognitive impairment. I think we all agree music soothing or uplifting or whatever it needs to be in the moment. 

While Robin doesn't sit still and listen to music, she does have a few favorite artists and songs. Queen - Bohemian Rhapsody - a absolute FAVORITE of hers. Brings a huge smile to her face.

She also really enjoys musical cards. Any with songs or where you can record your own voice.

Here's a snippet of that smile...


Thursday, July 24, 2014

visit from the Burgs

California visitors!

9 years ago when I moved to San Diego for college, I met one of my best friends on my dorm floor Lynsie Burg. Since then we have lived together in many places including Spain, traveled the world, attended concerts, had many a bottles of wine, and truly savored life. We both have incredible families and value that relationship. Lynsie is the other daughter my Mom never had and Lynsie's parents were my family away from home in San Diego. John and Sheri Burg were in the Twin Cities for a quick stop and were able to visit Robin.


Thankful for them, Lynsie, the entire Burg family and all their love!

research, news, and understanding the FTD Disease

Many of you know I have done extensive research on the FTD disease. Even before diagnosis I was reading about signs and symptoms. When it was confirmed FTD, I scoured the internet for more understanding of why, how, what happens, and what can I do. I attended 2 conferences in San Diego and have participated in a few support groups based on the FTD disease. 

Since it is taking my Mom's life, I want to know WHAT IT IS. I want to create more awareness in society, help others struggling through it, participate however I can in research and make a mission to find a cure. I'm drawn to this purpose.

Fortunately the 9th Annual FTD International conference is being held in Canada this year, close enough to travel to. I applied for a travel grant for caregivers and was awarded a generous amount of money. I'm still on the fence as to if I'll go as it's time away from work and a significant cost still. 

But I wanted to share the link to the conference for anyone interested in learning more:

Also the link to the Association for Frontotemporal Degeneration. This website is extremely helpful in learning more about the disease and the latest in research:

This video also shares another perspective on the disease - "It Is What It Is"

Additionally we have a local writer, Dan Browning, of the Star Tribune in Minneapolis that wrote a very personal and touching series on his wife's battle with FTD. She passed away this Spring at age 53. His blog is tough to read so prepare with kleenexes. I thank Dan for sharing his insight and giving more exposure to the disease.

Wednesday visits

Robin's Sister Dolly and Nephew Tony make regular visits on Wednesdays. Dolly is a massage therapist and gives Robin the deluxe treatment. She loves a good foot massage and it's truly the only thing that will keep her sitting for long periods of time. It's a blessing to have their visits.

Sisters 

Tony and Robin 

Kisses!




Monday, July 21, 2014

walking in style

Thanks to Robin's Niece Elissa and her two kids, Dreah and Tae, Robin has a stylin walker outfitted with purple dazzling!



The nieces and nephew visited this past weekend. Dreah was all hands on board to help Elissa and I give Robin a nice spa day with a soak in the bath tub, pedicure, massage, and hairstyle. The kids helped clean up Aunt Robin's room and smiled the whole time. 

Thankful for their love and cheer!