The Status Woe

Rising above mediocrity one mishap at a time

Retrain The Mom Brain


Photo credit here 

Parent training II

You may remember this post about my first time working with Issy here.  Or you can just check out this video.

Well, you will be glad to know that it got better!

She tends to get angsty to me.  Always has.  I think that is pretty typical for most kids (even “normal” ones).  They always seem to have a short fuse when it comes to their parents.


Our behavior plan is AMAZING!


Right from the start Issy’s aggression has gone down.  And by down, I mean nearly disappeared!


Well, we saw a spike in behavior when I started working with her.  14 years of her having a short fuse with me is bound to affect her.  However, our behavior plan is so kick-ass that even with me implementing it, her aggressions have gone down!

We’re on the right track!

When our insurance company saw the data, and the behavior spike, they determined that the behavior treatment wasn’t working anymore and that they were pulling funding.


Of course, it was explained to them.  They didn’t care, they were done.

No problem!  We’re ready for her to come home.  And most importantly, SO IS SHE!

So I explained the behavior plan in this post here.

It’s intensive, meaning that when you’re on duty, you’re busy!  But her behavior plan isn’t rocket science.

To put it simply, she gets tokens.  She turns in her tokens to get things she wants.

Sort of reminds me of something…

Oh yea, life.

Well, she earns token much faster than most of us earn money.  And we give her tokens constantly for doing the right things.

When I am working with her I have to carry a boatload of things:


Token board (with Velcro so it all attaches)

Two timers


Ponytail holder

Baseball cap

Obviously, I need to carry tokens.  The token board has to be close for Issy to actually put the tokens she earns on it.  We time many activities so it really helps to have TWO timers.  The counter is when I need to count something.  For example: if she starts to get aggressive, I need to count how many times she hits me, herself, or property.  The counter is the easiest way to do this.

And if she does get angsty, it’s best if I get this mop of hair into a ponytail and put a hat on.

I found this belt on Amazon.  I took off the chains but I love all the loops for hooking things onto it.

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Matt calls it my batman belt.


I love that man!

Here is a video of Issy trading in tokens for ipad time!

Nightly prayers.

Some personal thoughts on my training:

What my instincts are, as a mother, to do with Issy are almost always wrong.

Here are some examples:

If she is sad about something I should NOT go and try to comfort her.  She gets no comfort from it and I’ll likely get hit.

If she wants something I should not give it to her.   She has to earn everything.

If she is sitting quietly for long periods of time I should not try to talk to her.  She’ll get mad and hit me.  I remember feeling that way about my mom and I’m NOT a child with autism!  Hahaha!  Soooooo totally normal?

If I have to tell her “no” and I feel badly about it.  It does no good to explain.  Once we wanted to go to the fair.  We got there and it was closed.  I said how sorry I was and it was a bummer.  I used my (sincere) but sad voice and got hit.  Just saying “no” and moving on is better.

It’s generally better to avoid her.   I need to step in when I know I’m going to be successful and not get hit.  We have 14 years to re-shape.

Going up to her at any given time and hugging her and telling her I love her.   Yea, that doesn’t thrill her.  So am I doing it for me?  Or her?  I don’t want to spark an aggression so I’ll just love her from afar!  Or wait for her to initiate a big ‘ol hug for me!

There are a million more examples.


But to sum it up.  My parenting with her is nearly the opposite of what I have to do with my ‘neruro typical’ children.  For about .05 seconds a day I feel very sorry for myself.  The rest of the day, I’m so grateful that I’ve figured it out.  Because clearly, I wasn’t doing a great job for the last 14 years (well, I did fine.  The best I could under the circumstances, but it will be better now.)

So the next chapter in our saga is her transition home!

Thank you for reading!



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Team Issy Shirts

Issy’s treatment is going really well.  She is responding and the data shows that her instances of aggression AND the intensity are going down!  Yay!!  We still do not have treatment fully funded.  The insurance company (MESSA- not really an insurance company, but close) wants more information.  They will pay for Issy’s treatment until March 22nd.  With donations we can cover Issy’s therapy until the beginning of May.

A $3 donation = 6 minutes of therapy

A $10 Shirt = (math) minutes of therapy.  She is worth it!  I promise you!

The Team Issy Shirts

These are 100% pre shrunk short sleeve cotton shirts

Black with Hot pink lettering.

Front: Team Issy and a puzzle piece ribbon logo

Back: #autismawareness Helping advocate for all of those who have been “Issied” by the system

100% of the profits of these shirt sales goes to Issy’s treatment.  That’s because these amazing companies sponsored the shirts!  Please go to their Facebook pages and websites and show them some love  ♥

Britten Banners

In Home Health Care Services

Graceland Fruit

Curtis Insurance Agency

Crystal Lake Glass.

Corner Drug and Corner Toy Store

Honor, Frankfort, and Onekama Building Supply

I’m on the left wearing the team issy shirt.  I’m wearing a size adult medium (and a black shirt under because it’s cold here).  I like my shirts roomy and this was perfect (usually I prefer large but the large was a little too big). Hope that helps…

photo 4 (1)

Team Issy shirts are no longer available.  Thank you for your support!

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Meaningful Work

I had lunch with two of my bffs, Vickie and Wakako.  They are both amazing women and it was bliss to sit and have a grown-up lunch with them.


At some point in the conversation Wakako asked me:

Wakako: What’s Issy going to do when she gets older?

Me: Well, she will be home.  She can’t have a job. Can you imagine the first time her boss asked her to do something she didn’t want to do?!  I really just want her to be happy.  I guess she can watch movies ands surf youtube…..

Wakako.  Well, I think she can to do something.  She can do something that’s meaningful AND contribute to society.  I don’t know.  Maybe a chocolatier?

Me: I guess she could learn to melt chocolate and pour it into molds.  I could have her sell the chocolates to the local stores.  Maybe?

Wakako:  Well, that or something else.  You’re just going to have to pick something for her.

Me: Pick something for her?  Like a career?

Wakako:  I’ve had students that were “typical” but extremely indecisive.  I told their parents to just pick a career for them.  If they changed their mind later, fine. But at least they were working toward something rather than just fumbling through different courses in college.

Me:  Well, Issy’s smart.  She can learn ANYTHING!  She’s only 13…. so if we started working on skills now, well heck, she would be able to do millions of things!

That moment Wakako  seriously changed my life!!! I was so excited! I didn’t sleep a wink that night.  I was going to find “meaningful work” for my daughter.  It was time that she started a “job”.

In ‘normal’ life, most 13 year olds do not have jobs.  However, most of them do homework or participate in sports and/or any number of extra curricular activities.  Issy however, doesn’t do any of those things.  But instead of those things, she will have “work” or she will go to her “job”.

A huge problem we have with Issy, is boredom.  She just doesn’t enjoy that many activities.  Sure she loves to go to the water park but clearly, we can’t do that very often.  So she has a lot of time where she is just hanging out at home.  The more unstructured time like this, the more we see her behaviors.  During the weeks she is busy with school. On Saturday she is really happy to just hang out at home watching videos or playing on the ipad.  But by Sunday, she wakes up full of rage.


Is it because she is board?  Is it just a habit that she has to rage on Sundays?  We’ve tried to structure Sunday’s but failed when we tried to take her to church (she had a melt down. I was hit several times. It was horrible for the congregation to see.). We also live an hour away from a shopping mall or fun activities like a bowling alley or large movie complex.  Sundays are just bad news for us.

Back to my point, Issy will now have to do work daily.  It is going to be a part of her schedule just like going to school is.  In fact, she will go to school ride the bus home, have a snack, then go to work.  Just like other kids go to sports practice or whatever.  She will also have “work” on the weekends.

“Work” will be in a different place than home.  Our church offered the use of one of their rooms.  She will go to work, stay for a reasonable time, and then come home.  “Working” will help structure her time and may even give her the opportunity to earn her own money.

Currently, Issy is in residential treatment.   I told the behaviorist about Issy’s “work”.  They are incorporating Issy’s “work” into her daily schedule.

So what did I decide to do for Issy’s meaningful work?

Ready for it?

Drum roll…….


Yes, crafts.

meaningful work

She will be able to make crafts that we can sell at our two local art fairs in the summer.  I’ll also set up a website where she can sell her crafts. Maybe someday we can purchase a craft tent for shows and/or maybe eventually a building for her work in!!  Who knows?!

So for now, Issy’s work is using this paper punch to punch out pretty scrapbook paper, fold it into an envelope and use a small piece of double sided tape to secure the envelope.

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I doubt that there is much demand for a large number of mini envelopes.  I’m thinking that we may not do any craft fairs this year.  But the point is that she is learning to use the double-sided tape (she has to be careful and only use a small piece), she is using a paper punch, and she is doing SOMETHING.  There is great value in her just doing something.

So I’m on a quest to find crafts that Issy can do, but not childish looking craft projects.  So please comment if you have any ideas.  Oh, and have you SEEN PINTEREST!?!?!  I’m getting some great ideas there.  I even started an Issy board!  Let me know if you want permission to pin to it and I’ll add you (and be forever grateful to you).

I don’t know that Issy will do crafts for her entire life.  At 13 years old, and starting now, she may develop into quite an artist.  Or maybe we’ll switch over to making candies and chocolates.  She may, at some point, be able to tell me what she wants to do.  Can you imagine that day?!  We would turn the world upside down to offer her any opportunity she wanted.

So what about ‘meaningful work’ with your children?   Have you thought about it?  What have you decided to do?  I would love to hear your ideas and feed back.

Thank you for reading!  This is a picture of me giving you all double high 5’s!!!!!


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Day of Reckoning

This is the day that Issy would have been released from the treatment facility.  She has been in for 30 days.

Conflicted and grateful is the best description of how I feel.



I’m so glad she is getting treatment. So very glad.

I miss my baby so much. She spends her days and nights with people who are working with her, but they don’t love her.  All children should see someone they love EVERYDAY.  We see her once or twice a week….we all miss her.



My last blog post got a lot of attention (you can read it here).  Because of it, state politicians know about our case.  The insurance providers know about our case, and we are getting media attention.  The most amazing thing of all is the incredible amount of donations.  Let me just say for the record that Matt and I were completely against taking donations.  Really, our CMH or the state or BC/BS insurance should be paying for this because we pay in for services.  However, we can’t really be too proud.  She only has 30 guaranteed days and we need more.  Many more.  Friends, family, and friends we haven’t met yet (a better term than strangers) have donated for Issy.  Incredible.  One person donated a whole day! That’s $760.00!!  Another donated $1,000.00.  Can you imagine!?!?  We are so overwhelmed… so humbled….so grateful.

To date donations are enough to pay for another 20 and 1/3 days of treatment.  With the 30 days (I’m going to do some math here.  I’m blonde so be patient…)

That is 50 days of treatment!!!!

50 days!

50 days!

Now… let me talk about my daughter!!!!

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When Issy was 7. One of my favorite pictures of her.

Through something called a “functional analysis” they can figure out why Issy is being aggressive.  Is it because she is trying to get out of something like school work or chores?  Is she trying to get attention?  Does she like to look at tears (I mention this because she looks at you tube videos of crying babies a lot!) ?


What they learned was that Issy can’t tolerate being told no, or not being able to get what she wants.  Um….. Sound like every teenager on the planet.  Amirite?!  But add in her autism+ hormones+ whoknowwhatelse = aggression several times an hour (yes, an hour.  Remember the video in the last post?)

More math:

Autism+hormones+whoknowwhatelse=a large can of whoop ass


When a normal beating just won’t do

So now we know!  And this is a completely fixable problem.

Now let me tell you about an extinction burst.  I googled for an example and google did not disappoint:  The following is copied from here—->

If someone’s gained some reward every time for a particular behavior, the behavior will persist.  If suddenly the reward stops coming, it’s likely that the person or animal will not immediately give up the behavior. Instead, they’ll try it again and again, harder, faster, more emphatically.  It’s a burst of activity.  If the reward still doesn’t come, eventually the behavior will extinguish, or become extinct.  So, the burst of behavior before extinction of the behavior is called an “extinction burst”.

My favorite example is the elevator button.  Let’s say you ride the same elevator every day.  You get in, you push the button for your floor, and you’re rewarded by the doors closing and the elevator taking you to your destination.  One day you get in and push the button, and nothing happens. Do you immediately say, “Oh, this must not work anymore, I’ll just take the stairs to the 11th floor”?  Or do you push the button again?  And again? And harder?  And faster?  And in special sequences?  That’s the extinction burst.


OK, so Issy is at the facility for three weeks and they are seeing her problem behaviors.  And some of them are the start of extinction bursts.  That’s great! Only problem is she is due to come home in a week.  If her aggression is going to get worse, perhaps much worse (Picture the elevator), she’s doomed.  Seriously, we are all doomed.

The treatment center is asking for is a little more time….because they feel they can help Issy!  She just needs more time.

In comes the Michigan Education Special Services Association (MESSA) who provides our insurance. They oversee our benefits like insurance.  They aren’t really insurance, but you can read about them here.



Even though our BC/BS insurance will not cover any of Issy’s treatment, this association offered to pay for two more weeks of Issy’s care.  TWOMOREWEEKS!!!!!!!

Meantime, at the facility: They have seen Issy’s behaviors (she has injured three of their workers, destroyed all of her personal property including a flute and ipad, plus broken two of their phones).  They estimate that in a perfect world Issy would need possibly up to eight months of treatment.

More math:

30 days (paid by Medicaid and CMH)+20 days (paid by donations) + 14 days (paid my MESSA)= 64 days of treatment.  Fabulous news right?!  Yes!!  We are beyond thrilled.


The facility recommends 240 days.  After my recent visit to the treatment center and based on the data I saw, I think her treatment will be somewhat under that (we hope) but it’s going to be significantly more than 64 days.

We are reluctant pioneers


In a phone call with my MESSA advocate, she called us “pioneers” because people will be coming after us and hopefully getting the treatment they deserve.  Already, so many parents have contacted me with our EXACT story!

Big high 5s and hugs if your life is a Pat Benetar song.  I know what you are going through.  YOU ARE NOT ALONE!!!  There are many of us trying to help our children. Stay strong.  Help is coming!


First and foremost, I need to get Issy’s full treatment financed.  Secondly, I need to be very loud about how this is done.  Thirdly, I need a big audience because it will be hard to deny a little girl treatment if the world is watching.  Fourthly (is that a word?) anyone who is living this level of aggression needs to be able to ask for help and GET IT!!!!  These are PROBLEM behaviors.  Not “annoying” behaviors.  Not “pesky” behaviors.  Not “typical” behaviors.  These are OHMYGODHOWDOPEOPLELIVELIKETHIS  behaviors.  I never want another parent to have to tell this horrible story.  Put themselves “out there” for criticism and back yard quarterbacking (just look at some of the comments on my blog!).

If you are dealing with problem behaviors you should be able to get help.  Your local doctor should know who to call, your local school should know who to call, your local community mental health, should know who to call.

Our story has gone viralish.  We have a lot of attention.  But in order for this to really make change, we need more.  Please share our story.  Share with your politicians, medical professionals, journalist, favorite websites, favorite bloggers, favorite celebrities.  If one celebrity notices and does something, the world will change for families like ours.  Please help.

And FYI, if you contact any of the above people, be sure to include your contact information so they can reach you.

Please help me make sure the world knows and watches.  Spread the word on twitter and facebook.  I created this little picture to help get peoples attention:


Facebook: Team Issy 

Twitter:  @TeamIssy

Jesus: Issy Stapleton

The donation page is here, if you would like to donate.  $3 is 6 minutes at the facility.  Every minute counts!  Thank you so much

Thank you for reading….  Go team Issy!!!!

p.s.  Our local NPR station did a story on us.  If you would like to listen you can find the show here—>


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You found WHAT in your baby’s mouth?!

This article was originally written for my bff Joy Rose and her Museum of Motherhood fundraising project:

I remember distinctly being at the beach with my 10-month-old daughter. I was spreading out the blanket and organizing our little beach space when I looked up and saw her reaching for a very small, but definitely dead, fish. Now, let me remind you that at 10 months old, babies like to put things in their mouth. And by “things” I mean EVERYTHING. My daughter was no exception. I watched in horror as she grasped the fish and with lightening fast speed, had it in her mouth.


I ran to her but she had already spit out the fish. That didn’t stop me from rinsing out her mouth with a bottle of water. Poor baby, it must have felt like water boarding but she had a DEAD FISH IN HER MOUTH!!

We are each unique, just like everyone else. So I figured I wasn’t the only mom to have a mommy fail moment. So I approached the mommy communities on my Facebook pages (here) and posed the question: What was the worst thing you found in your baby’s mouth? Below is the list for your reading horror:

Live spider
Unused tampon
Pebbles from the beach
Wet, meaty cat food
Part of a pop-up book
Live cricket
Rubber band
Organic dog food
Dog poo
Silica gel pack
Placenta from a younger sibling’s home birth
Cat poo
Wood louse
Poo with straw/hay in it
Safety pin
Unknown animal poop from the park
Half of a slug
Huge locust
Human poo
Twix wrapper
Large piece of confetti
Rectal thermometer after use
Live minnow
Entire tube of lip balm
Sick goldfish from a pond
One of mom’s “special” toys
Entire tube of lubricant
Moth ball
Already chewed gum
Balloon fragment
Toilet water-dipped Oreos
Half a cock roach
Hands…right after a dunk in an unflushed toilet
Gum from an unknown source

Please tune in for my next blog submission where I share with you a list of the worst things found in a baby’s diaper…

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Little Things in Little Ways

I wrote this piece a while back to help benefit the Museum of Motherhood (MOM).  I’m a huge fan of Joy Rose and proudly call her a bff.  Please be sure to check out the MOM’s website and visit this amazing place the next time you are in NYC!

Little Things in Little Ways


My youngest daughter is 10 and I have yet to complete a scrapbook. I don’t blog so I have no record of accomplishments from any of my kids. I could go on and on about how busy I am. The truth is however, I have the same 24 hours everyone else has. But honestly, I feel like life is passing by far too quickly. So for the last few years I’ve been working on documenting some little things, in little ways.

I started writing in books. The books I read to the kids and the books they read to themselves. I make comments on the inside covers and in the margins. When the kids outgrow a book, I add it to a shelf of books I intend to keep forever and ever. I picture their kids reading these books some day. Won’t that be fun for them to read the books and all of the little messages inside?

I write in cookbooks. I tweak recipes in them. But better than that, I write about how my family members feel about the dishes I make. I write a few sentences and sometimes add drawings. It doesn’t take any time. I enjoy it. And in the decades to come, I will have a great record of how horribly I cook and how ungrateful my kids are.

I write on artwork, sort of. I have original art, prints, and crap posters adorning the walls of my house. I don’t have art just for aesthetics. I have it because it means something to me. So I write why I own it on the back of the frame. I add the facts about the acquisition (gallery, gift or garage sale), why I like it, and anything else relevant.

Recently, I started writing on appliances. I know, I’m getting out of control, but this is quickly becoming my favorite thing. I have a sharpie on my dryer and write the items I find. Here is a partial list: coins, safety pin, guitar pick, barrette, ChapStick, money, poop, sunglasses, teeth (after a trip to the dentist), rocks, keys, and string cheese.

I have a journal book that floats around the kitchen and dining room. My husband and I leave notes to each other in it. The notes are sweet, angsty, amorous, antagonistic. You name it. But it’s a great record of little moments.

And finally, I keep a calendar like everyone does. I started adding a little more to it. It’s not much really. Not like a diary filled with reflections. But it’s about the best I can do for now.

Bio: Kelli Stapleton graduated from Kalamazoo College in 1995, and went on to work as a scientist/molecular biologist in both academia and industry. She gave up her short term genetics projects to work exclusively on three long term projects. They are her children McEwen, Isabelle, and Ainsley.

In her free time, Kelli is the producer and host of the wildly popular Birth Stories on Demand internet radio show. She is also the author of the Birth Stories on Demand Presents series of books written to entertain and inform women about childbirth. She manages the BSOD website and spends far too much time on social media.

Kelli is also aspiring to take over the planet!



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Going to the Deadbangers Ball

Photo Credit

I have yet to meet anyone who is as excited about dying as I am.

Let me just say that I am NOT suicidal.  That is something completely different, and I don’t want to freak anyone out.

Back to the original point—> I’m not afraid to die.  Not one bit.  I’m actually excited about it happening.  Preferably before I lose all of my teeth, my bodily functions (exemption for when I sneeze), my good nature, and skin elasticity.

Definition—>  Death: the act of dying; the end of life; the total and permanent cessation of all the vital functions of an organism.

Also referred to as:

  • To breathe one’s last
  • Assume room temperature
  • To count worms
  • Wearing a pine overcoat
  • Negative patient care outcome
  • Deadbangers Ball
  • Moved into upper management
  • Going organic
  • Rottingham
  • Eating a dirt sandwich
  • Pay one’s debt to nature
  • Dust to dust reunion
  • Metabolically Challanged

I am a proud Catholic that sporadically attends a Lutheran Church.  I don’t mean to brag or anything, but I am one of the most prolific sinners I know.  Surprisingly, I believe that I will go to Heaven.  I believe in Heaven’s existence so much that I’ve already started making plans for when I’m there!  Seriously, I never get to talk to my friend Marni, so I shrug it off and remind myself that I will have lots of time when we’re in Heaven together.  I know I can’t be the only one who does this?!

Have you seen any of those shows about people who have near death experiences?

Photo credit

If I am ever in some sort of horrific accident, I’m running (not walking) to “The Light”.  If God says, “It’s not your time Kelli”. I see myself clinging to his robes and R-E-F-U-S-I-N-G to go back.

Now here comes a little irony.  I have a daughter significantly disabled with autism (but higher functioning than Britney Spears).  I CAN NOT DIE!!!


Thank you Four Sea Stars  for the image!  Blog=awesome= here—-> (

As the poster says, I have to make this child ready for the world.  But also, I have to make sure she is  SAFE when I’m gone and living on the other side in the pearly gated community.  She needs to be safe from abuse, exploitation, neglect, theft, and so on.  Remind me to tell you about a worker we had that faked a pregnancy and then accused my daughter of causing her miscarriage.  My little girl was 11 at the time. *sigh*

What would keep her safe (and not burden her brother or sister too much)?

ImageImage from google


How much money will it take to make sure that she has a home, staff, cameras installed EVERYWHERE, comforts, and safety?  I did some quick mental math and decided that it should be AT LEAST 5 million dollars.


How much have I got saved so far?  Well….I don’t even have a savings account yet…..

I’m a very hard worker.  I have a successful talk show, website, book.  I’m a public speaker and events host.  But I need to ramp it up a notch or two if I’m going to make it to the 5 million mark.

But let me pause here to just say, I would feel MUCH (MUCH!!) better if it were 5 babillion.  That’s right FIVE BA-BILLION DOLLARS! People can be/and are horrible.  I want this daughter of mine SAFE and HAPPY.  Also, I want those that care for her to be HAPPY.  Really happy!  I want them to LOVE their job!

Things I’m considering to do to earn 5 babillion dollars:

***Internet porn- but with the bloom of youth gone, and 20 pounds overweight, well…. no one wants to see that *sob* (ok, my husband would, but he isn’t about to pay anything… cheap ass)

***Great Lakes Pirate- This honestly excites me more than a little bit.  I think I could come up with a FABULOUS outfit, great make up.  With the help of youtube, I could watch HOURS of Johnny Depp and work on my accent. *arrrg*.  I need to find a boat, learn to navigate, and somehow board large lake-going vessels and rob from the rich to give to me.  Clearly, this isn’t something that I can start tomorrow.  Oh, and I only want to do this for June, July, and August.

***Make a sexy calender- see above for internet porn

***Start a ponzi scheme-I can’t even convince my mother that the “Lindsay Lohan” self-tanner orange look is out.  I’m not entirely convinced I could get people to actually give me money.

***Reality show- Dear God in Heaven please let TLC see this.  If effing Honey Boo Boo can get a show, surely I could!?  My exploitation of this family would know no bounds!  Yes! Yes! Yes! (pssst TLC email me maybe?

So the irony is….

I want to die.

I’ll never be able to earn enough to die.

When I do die, I’ll be the world-record holder for oldest living person. I will have  lost my teeth, control of my bodily functions, my good humor, and skin elasticity.  I just KNOW it….

Care to bet 5 babillion dollars?

*lip kisses*,


Photo credit=Rick Steive

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