Thursday, February 27, 2014

Rare Disease Day

I am hijacking my 30 day challenge to bring you Rare Disease Day...Today!  This is the day set aside to recognize those who live with a rare disease and to educate the public, health professionals, politicians, policy makers and anyone else involved in the life of someone with a rare disease.

This international day to recognize rare diseases comes at an interesting time in our life.  This week especially, I have gotten involved in the great insurance battle to get this clinical testing approved.  It has been an annoying struggle to say the least.

In all my work in this, I have wondered why I have to pay for the clinical testing anyways?  I have basically donated my kids to science for the past 21 years.  Whenever any entity needed tissue, blood, marrow, even fragments of bone, we were there giving freely; pushing it through insurance and hoping that someday all the research would pay off.

That day is here, almost... however...what is the pay off? What is the pay off for us?  The hospital stands to gain some recognition for having the research facility that found this new mutation.  The doctors all certainly stand to get some monetary and career recognition and at this point...we don't even get to know the name of the disease! I have to pay to find out something everyone else already knows but me and this claim is going to add a tremendous amount to our lifetime maximum benefits not to mention the fact that I may end up paying for some of it depending on what insurance finally decides!  It's crazy.  I feel like they should send us a corny t-shirt that says,

"My doctor found a rare mutation in me...they got a raise and published in the medical journals and all I got was this t-shirt and some more bills!"

The other reason this day is so important to me is because of the awful things happening in this country to people with rare diseases.  Some are being denied treatment because insurance companies are refusing coverage.  Some do not get treatment because their family can not afford the incredibly expensive medications.   We have two prescriptions a month that run us over $2000 to fill them and that's only two out of many more.  Thankfully, insurance pays for that once our co-pays and deductibles are met.

Most importantly, there are children being taken from their parents and Warded to the State.  There are stories all over the news but the most recent and heartbreaking is the story of Justina Pelletier.  She has been in State custody for over a year.  Her parents have been accused of medical abuse, but, in the care of the State, she is not receiving proper care.  Justina is documented as having Mitochondrial Disease.  Her older sister has it as well.  That is the same disease that my kids have!  This makes me furious and scared.

This is happening at an alarming rate.  One investigation even states that it is happening so doctors can use experimental treatments on these children since they are mandated to State care.  They can do whatever they want, withhold treatment or force treatment, whatever they see fit, even completely change the diagnosis that took years to get!

One mother, is being investigated after her son died.  She kept a blog and documented his life.  Authorities are saying that is evidence that she caused his death!  It's ludicrous!  It's scary...

Wednesday, I found out that our insurance company is denying the request to do the clinical testing, stating that "I haven't taken my kids to the doctor enough in recent months"  I don't even understand how they can justify such ignorance.  So, even when my kids are having a 'good' couple of months...I am being punished?  Accused that maybe they aren't sick enough?  I can't just enjoy a quiet couple of months with semi healthy kids?  And...they completely disregard the $13,000 in claims over the past 6 weeks?

Thursday, they say...well, if you can get the lab to change the coding to one of 3 options, then we will allow the testing to take place without pre-authorization but once the test comes back, we will decide if we will actually pay for it.   ARE YOU KIDDING ME?

This is the reality of life with a rare and chronic condition...times three!

And...people wonder why I am always tired, why I never leave my house, why I hate talking to people and why I need to just run away...This doesn't even sound like it could be real.  This is America but it feels like someplace else.

Tuesday, my Wasband came by to pick up Sam for the evening and I was explaining some other problems related to this and Sam turned to me and said, "This sounds like the Hunger Games!  Can we really be controlled like this by the government?  They can really tell us what we can and can't do?"

I wasn't sure if I should laugh, because it was kind of funny, just out of the blue but it was also very sad and sobering!

When I kissed him goodnight, I told him I had chosen him as our Tribute!  ha ha... "May the odds be ever in your favor!" Just kidding...There was my humor for this post.

So...today is a big day to me!  Not only am I reminded that we are fighting a disease that is stealing away their years but I am fighting the ignorance of law makers, insurance companies, social workers, healthcare professionals...

I know that there are families with bigger fish to fry than us and I worry about them and pray for them.  I am not ignorant to the fact that most of the people around me are probably tired of my broken record problems but still...It's not the life I dreamed of either.  There is nothing fun about how things have been going for us since last Fall.  Through it all though...there is no doubt that God will continue to carry us, even on the days when I feel like giving up for a little while and somehow...I am able to get the bills paid, work the crazy jobs and crazy hours and still fall in love with my kids more and more each day!  That is pretty much a miracle and makes it possible to get up every morning!



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The Most Awe Inspiring Moment

How do you narrow down THE most inspiring moment of the last 5 years?  There have been many, many moments.  Everyday, I am in awe when I watch my kids and the courage they have.  I was really inspired sending Spencer off on his mission to dedicate two solid years to serving God.  I was in awe as I sat by the bedside of some very special people as they left this life and headed back to Heaven.  Meeting Mickey Mouse on Sam's wish at Give Kids The World, left me speechless and listening to a CD my daughter recorded on her wish still gives me goosebumps!

But, there is one awe inspiring moment that I may never experience again and that is the one I will write about today.

The place was the Museum of Modern Art in New York City.  We were there for Spencer's Wish trip from Make a Wish.  There is nothing in the world like the smell of creativity!  The sight of every imaginable color contrasting the creamy white walls and crisp white light is second to none.  It's a place of passion, perseverance, imagination and inspiration!  It's my favorite place to be!

Around every corner was a feast for my eyes...another chance to gasp at the beauty of the Masters but one corner took my breath away!

It was probably the only time I can say that what was lurking behind that corner was something astounding and terrific.  We walked into a large hall, the floor patterned in parquet wood, the walls flanked with pieces of near perfection.  Large partitions stood at attention in the center of the room.  Around one such divider stood throngs of people; gazing and gawking.  I walked with intrigue to see what treasure I too would stumble upon, and as I peered around the corner to catch an early glimpse, there before my eyes hung an original Van Gogh! Starry Night!! One of my favorite pieces of his.


I could not believe it!  I think my heart skipped a beat or two.  I imagined what it could have been like if Vincent himself had of been there.  All of a sudden, everything I had read and studied about this man became real! It all came together, every facet of his amazing life!  He has one of the richest, most intriguing lives I have come across.  His life was nothing short of struggle and torment with few, quiet little victories, hardly noticed by anyone around him.

I have had this odd intrigue for Vincent Van Gogh for about 12 years!  I have studied his life and the book Lust for Life, that was a biography of his life, is in my top ten list of the best books I've read.  I have read that book three times.  When I took a Psychology class down at a nearby technical school, I had to write a paper on a mental illness and analyze the life of someone with a mental illness.  I chose Vincent Van Gogh.  It was a lengthy paper and included so much research. Even after the paper was complete and the grade returned, I continued to explore the world of Van Gogh.  Each one of his paintings is a direct reflection of his mental illness and by looking at the colors he used, you can tell what his mental state was, the deficiencies in his life and his joys. To compare what was happening in his life when each painting was completed is an incredible journey.  I love Van Gogh.

To see an original painting, not a photo copied version I hijacked from the internet, was truly amazing.  It was one of those jaw dropping moments for me.  I didn't want to leave that museum.  Every wall held a treasure; Monet, Manet, Picasso, Klimt and Munch.  Their art and chosen medium holds so many secrets and meanings to their struggling lives as artists.  I could feel their spirits lingering in those halls!








Visiting this museum was an amazing moment I may never experience again!
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Wednesday, February 26, 2014

My Day at a Glance

Today's challenge is to 'bullet' my day.  Are you ready for this?
  • 5:30- Wake up and jump  fall out of bed.  Shower, dress etc.
  • 6:00- 15 min of scriptures, prayer
  • 6:20- Begin telecommuting for Orthopedic Group in Pocatello, write article for their blog
  • 7:30- Make lunch for Sam, let the dog out, get my cleaning supplies stocked
  • 7:50- Drive Sam to school
  • 8:10- Arrive at my cleaning job and have a marvelous time, the highlight and joy of my day
  • 11:30- Arrive at home, clean up, head to appointment at Bank, lunch with Shelbie, call Oncology for testing updates, call insurance company if needed, pick up prescriptions
  • 12:30- Home again- Begin telecommuting drafting job for builder in Pocatello 
  • 2:00- Work on drafting custom home and pool design for new residential client
  • 3:00- Layout scope of project for new healthcare design project- begin gathering resources
  • 3:30- Pick up Sam from School- visit with him and Shelbie, start cannelloni for dinner, instruct Sam and his cooking class partner how to make Nanimo bars for their school demonstration on Thursday, make said Nanimo bars so they can hand them out to the class, get ingredients ready for their presentation. 
  • 5:30- Eat dinner, family scripture reading, clean up dishes
  • 6:45- Drive Sam to Parkour class, head to my night job
  • 7:00-9:30ish- Work at my night job cleaning an office.  If I get done early, head home to start drafting
  • 10:00- Pick up Sam.  Connect with kids, fix bedtime snacks for them, family prayer
  • 11:30- Check email, blog, straighten office, tidy house, shower
  • 12:00- Head to bed...lay there in extreme pain until 3:00 am, capture a couple of hours of sleep...start all over again.
Here's a little trivia- I clean 63,000 sq. feet a week.  That's 37 toilets and over 80 bags of garbage! It's the perfect job for someone with arthritis! 

It's an awesome life, I know.  This happens to be an extra busy week but everyday is always busy.  I change my wake up time and my bed time to accommodate the activities for the day.  When the kids are sick or we have doctor appointments, or I have plans to help someone with something they need or extra jobs, I usually get up earlier and/or work later.  Regardless of the day...my kids come first and I am flexible enough I can move things around, but this is how I think the day today will go!

I miss the stay at home mom days!  Oh how I miss them!  I am not fond in any way of taking time away from my kids.  I am exhausted most of the time and hate that life has to be like this just to put food on the table and a roof over our heads oh and pay for incredible medical bills.  I love to work hard and be self sufficient but I just wish it could be a little more balanced and include a little more time to recharge my brain.  This is pretty much how the week looks from Monday to Saturday.  Sunday is a whole different kind of responsibility and energy but 'rest' is not typically part of that day either...sigh....

I think they call this American Dream...I call it, the single mother nightmare!
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Tuesday, February 25, 2014

Changing One Thing...


Today's challenge question is...

If you could change one aspect of your life that would bring more happiness, what would it be?

This is not easy!! Money.  That would bring more happiness.  Money doesn't buy happiness but lack of it sure creates a lot of anxiety, stress and unhappiness but...that's not my answer! 

There is one thing I have always had a hard time with...okay, make that two but they are sort of related, that if I could figure them out, I would be much happier!  
Image: challengefuture.org

Passion...And...Direction

I am not typically a jealous person.  I pretty much keep to myself and try not to care too much about how I measure up to others but I do get jealous when I see someone with passion; someone who has that one thing they have to do because they want to do it.  That one thing they never tire of that brings them never ending happiness!  That one thing they set out to do and actually accomplish.  I can come up with a million awesome things I get excited about but the excitement fizzles out once I start tackling it!  So frustrating!! 

I believe that with passion, comes direction.  

It's probably one of my greatest regrets in life; to not be passionate about something, anything. In fact, I am probably the least passionate person you will ever meet.  Even when given the best surprise, I am reserved and conservative at best and it comes out as a "Wow! So great!"  

I have never...Jumped for joy!  Clapped my hands in excitement.  Thrown my arms around someone in celebration.  My excitement is quiet and happens on the inside to the point that I want to burst, but it never comes bursting out of me.  The worst question I can be confronted with is "What makes you happy?" Dread...I just don't know...  I am a deep thinker, a quiet soul and there are many things I enjoy...but still finding that one thing!  sigh...

I saw this quote recently and it pretty much sums up my feelings on this subject.

Inner indecisiveness as wide and wavering as the ocean...that's me and completely opposite from passion. 

My own kids have found their passion and many times, I like to peek into their life to soak in all that passion!  

I'm not giving up.  Everyday, I wake up and hope to find passion hiding around some unsuspecting corner!  What is your passion?  
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Monday, February 24, 2014

15 Fun Facts

Today is day 1 of my blogging challenge and today's post is about 15 very little known facts about me!


  1. My name is Kathy but I secretly love it when people call me Kath.
  2. I had my Aura read 9 years ago...the most interesting activity I have done. 
  3. I have this knack for analyzing my dreams.  I don't usually dream but when I do, it's the kind that wakes me from a dead sleep and is almost always terrifying in some way.  The first thing I do is hit my favorite dream dictionary to find out what it meant. It is always meaningful!! Always.
  4. I met an Italian man when I was 19 years old, he was 93.  Every summer weekend for three years, I would drive him to his farm outside of town, pick apricots and plums, dance with him in his one room home to his old records on the phonograph and listen to stories of his life back in Sardinia.  He would come to my apartment and fix me spaghetti and meatballs-the Italian way! His name was Joe.  He promised me that some day, he would be reincarnated and come back to marry me and buy me a black grand piano.  Still waiting for Joe....
  5. I took a 43 year old man to my Senior prom.  Go ahead and chew on that for a day or two...no, he was not my dad, or an uncle or a relative of any kind...just someone I had a wild crush on.  I think it was his awesome grey beard!
  6. I am addicted to Lindor truffles- extra dark.  I have a special technique where I melt the inside but not the outside...then pour the liquid goodness down my throat...mmmmmm.
  7. It has been 3 months since I watched TV.  
  8. I didn't own a pair of jeans until 2002.
  9. I have ridden in the back seat of a police car...
  10. I analyze my colors every 3 months. 
  11. I was born with a birth defect called Congenital Hips.  My feet were pointing backwards!  True story.
  12. I have had 10 articles published nationally.
  13. My dream is to live in a grain silo or quonset
  14. I bake desserts every week, sometimes daily and no one eats them, including me.
  15. The worst thing I did as a teenager was sneak out with my friend from her house at 1:00am when I slept over.  It was her idea and I was terrified! We walked a half a mile in the winter to meet her boyfriend who drove us to town for a Slurpee.  I prayed the whole time that if we made it home alive...I would never disobey again! 
There you have it...15 random things about me!  Mostly, I'm pretty boring... 


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Sunday, February 23, 2014

30 days of challenging questions

Tomorrow is the big day!  I start my 30 day blogging challenge.  I am already scared!!!  This is a huge undertaking.  There are so many options out there for 30 day blogging challenges but I decided to customize mine because most of what is out there seems so boring and blah.  I jazzed it up a bit...over thought a million questions, stumped myself on a hundred more...and here we are!

Here is a list of the 30 things I will be blogging about over the next 30 days!


  1. 15 fun facts about me
  2. If you could change one aspect of your life that would bring more happiness, what would it be?
  3. Bullet your whole day.
  4. What was the most awe inspiring moment of my life in the past 5 years
  5. What is the most important thing I put on in the morning before I leave my room?
  6. If you could spend one day with three of the most influential people of your life, who would they be?
  7. What reality show would I love to be on?
  8. What lesson did I learn yesterday?
  9. What is in my purse...right now?
  10. What is something I intended to do today but didn't?
  11. What three words describe me best?
  12. Parenting clicked for me when...?
  13. My strange addictions...
  14. Foods I can't live without.
  15. My biggest pet peeves.
  16. How did I choose my profession?
  17. If my life had no limits and I could have it all, do whatever I wanted, what would life look like?
  18. With my iPod on shuffle, list the first 10 songs
  19. The one thing I miss about being married.
  20. My favorite childhood photo.
  21. My most embarrassing moment.
  22. That moment that changed my life.
  23. My favorite book titles
  24. My favorite movies
  25. The song that inspires me the most.
  26. Something you miss from your childhood
  27. My death row meal.
  28. If happiness was the national currency, what kind of work would make me rich?
  29. When my greatest fear came true...
  30. How old would you be if you didn't know how old you are?

I gotta go...I've got some serious writing to do!  See ya tomorrow, and the next day...and the next day...
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Saturday, February 22, 2014

Random Acts of...

PIZZA!!!  That's right, Random Acts of Pizza!!!
(image- en.Wikipedia.org)


This is hilarious!

Last month, when I was working on my 29 Gifts project, I came across this website called 'Random Acts of Pizza'.  Here is how it works, people either go to this site to request a pizza or they go to give away a pizza! They ask, 'Are you a giver or a receiver?"

I am not a member of this awesome pizza society but I do have fun visiting their website to see the circumstances people find themselves in when they need a pizza or have one to give away.

Here are some of my favorite entries:
"Looking for a large, open-minded pizza to hang out with tonight. I can host a casual night of relaxing fun as I really like to stuff my face. MUST BE DISCREET. No games, no strings attached unless it's cheese on the pizza. Possibility of multiple eating partners if you are open to that kind of thing, so bring some friends.
Me: skinny build (could use some food), clean teeth, average height, HUGE appetite ;)
You: I prefer toppings rather than bare, must be disease free but grease IS O.K.! I like a pizza with curves that isn't afraid to have a good time and speak it's mind.
PM me if interested, subject must be "stuff my crust" or I will ignore. It does not get more real than ME!"

 I want to buy this guy a pizza just because of his totally awesome request!!! So creative- he deserves PIZZA!  Oh, he got one!!! 

Here's another good one, "Cheese is her favorite. We live in Roseburg, OR. If anyone is more interested in our story I can answer questions.
We're by no means starving - but it would bring a smile to my wife's face and she's been pretty down lately. And yeah, I'm looking for work - any tips or prayers would be more than welcome. :)"

And another...."A pizza would be very much welcome. All last week I was sick with the flu and I missed the entire week of work. On Friday my wife got sick too and ended up being hospitalized with H1N1, pneumonia and an extremely high liver enzyme count (13x the normal levels). The doctors have run extensive tests and can't figure out why her body is attacking itself, so there's no telling how long she might be hospitalized.
I have been existing solely on stress and terrible hospital food since and our finances are dwindling. I won't be getting a paycheck this week due to my missed work and pizza would REALLY hit the spot. Any help would be appreciated. I'm in the US and have Pizza Hut and Papa John's that will deliver."

Some people offer pizza too.  "I am a college student who managed to pull off 18 credits with a 40 hour week the past month. In honor of that I got a raise, and I would love to share it with someone who has a Papa John's, Pizza Hut or Domino's near them in the US"

There you have it!  There is still good in the world and kindness is delivered one pizza at a time!! 

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Friday, February 21, 2014

Finally Decided...

Well, I think for my 30 day challenge, I am going to do a blog challenge.  I am going to write something you don't know about me every day for 30 days!!  This does sound incredibly challenging because one, blogging every day for 30 days is hard and two, I tend to do a lot of self editing and stay on the mysterious side of life rather than letting it all hang out so I'm a little uneasy about how this is going to go.  I already have my list of topics lined out so I am raring to go!

At some point in the month of Feb/March, I will be updating the world on our journey to another disease so some days, the blogging might get crazy!   Oh well, you won't be short on reading material!  I can't guarantee it will always be a riveting read.

So, starting Monday, the blog challenge begins.
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In a rut...

We are stuck.  In a rut.

Why is it that waiting around for this clinical testing has completely stalled our life?  In my mind, I keep telling myself it's not a big deal.  In my mind, I think, it will happen when it happens.  Even when it does happen, it's not going to be that mind blowing...a trip to the hospital, a few vials of blood and that's it.  Nothing too exciting.

Even though my head knows all this to be true, my heart is doing something completely different.  Or maybe it's not my heart...maybe it's the shadowy corners of my mind.  I don't know, but somehow, we are stuck in a very exhausting holding pattern, doing nothing really, and I'm not really sure how to get out of here.

It's weird how one little piece of life changing information can do so much to change the view of everything.

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Wednesday, February 19, 2014

30 Day Challenge

I have been intrigued with the idea of doing a 30 day challenge.   I first heard about the idea after listening to THIS Ted Talk.  Check it out.  I have been thinking about this for months...

I just can't figure out what 30 day challenge I want to do.  Of course there are about a hundred or more fitness challenges.  I have started a fitness challenge but I am doing it for more than 30 days.  It's a goal I want to reach before my 45th birthday which is in about 10 weeks, give or take.  More on that later.

Anyways, I went to the internet to round up some ideas.  Here's what I found:

  • Make a new friend every day for 30 days- This doesn't really interest me
  • The left side challenge- do everything on your left side for 30 days.  Weird...moving on. 
  • No sugar for 30 days- No thanks.
  • Photo of the day- this may have some possibilities but my life is sort of boring
  • No Facebook for 30 days- there is nothing challenging about that
  • Speak 50 slow sentences a day- Huh?  I don't get this one...who has time for that? haha
  • Replace chocolate with love- Nope...Not giving up my Lindor truffles
  • Try a new recipe a day- Hmmmm, maybe...thinking on this one. 
  • Practice a random skill a day- this could be interesting but time consuming
  • Do something that scares you every day- I already do this every day I wake up and face my life ;)
  • Don't complain for 30 days- I don't think I'm a big complainer but I have a hunch this might be harder than I think...I would probably discover I am a complainer! 

I still haven't decided but I really want to tackle something.  I kind of feel a big let down after my 29 gifts project which was so awesome!!!

I will keep you posted!  In the meantime, if you have any ideas for me...leave me a comment!  I would love to hear from you!

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Saturday, February 15, 2014

Love...it's complicated


Well, happy 75% off candy day!  The day after Valentine's really is the best day...candy is cheap, almost dead roses are cheap and...there isn't a waiting time at the only decent restaurant in town!

I usually hate Valentine's day, not because I'm single but because it just seems ridiculous to have a day set aside to remind us to tell the people in our life how much we love them.  This year, I did not buy myself flowers!  Probably the first time in 9 years!!  I guess me and myself are just drifting apart! I'm just not the same person I use to be...I've changed and I'm just not into myself that much anymore.

Love...it's complicated!  sigh...

All day yesterday, V-day, a local radio station was playing love songs.  I love myself a good love song but the more I listened on my commute to work, the more I realized that they weren't exactly playing love songs. Just because it's a ballad, doesn't mean it has a warm, loving sentiment, in fact, just about every song was about love gone wrong!!  Some of the songs I heard were...

  • Part Time Lover by Stevie Wonder
  • I'm All Out of Love by Air Supply
  • Love Song by Sarah Bareilles ...She's not going to be writing him a love song...and breathing is harder...ya, that sounds like love.
  • You've Lost That Lovin Feeling by The Righteous Brothers
  • Coming around again by Carly Simon
Made me smile just a bit...Yep, love...it's complicated!

This week, I have been calling my grandma every day to check on her while my parents are on vacation.  She has Alzheimer's and since she only sees me once a year, I didn't really think she would remember me.  She didn't.  We talked about the same thing over and over and the conversation was mostly confusing but she said, "I miss you so much.  I wish I could hug you through the telephone.  Thank you for calling me...Now, who did you say this was?"  Alzheimer's can steal a lot, but it can't steal love.  Love will always live in the heart, not the head.  To hear my grandma tell me she loved me was a really great Valentine!

Love...it's complicated.

Not to leave out a feel good story or two...this will warm your heart like nothing else will!!  A couple of very sweet stories I found recently about true love. (Source:Marc and Angel Hack Life)

"Today, due to Alzheimer’s and dementia, my grandfather usually can’t remember who my grandmother is when he wakes up in the morning. It bothered my grandmother a year ago when it first happened, but now she’s fully supportive of his condition. In fact, she plays a game every day in which she tries to get my grandfather to ask her to re-marry him before dinnertime. She hasn’t failed yet." MMT  

  "Today, my mother passed away after a long battle with cancer.  My best friend lives 2000 miles away and called to comfort me.  While on the phone, he asked, “What would you do if I showed up at your house and gave you the biggest hug in the world?”  “I would surely smile,” I replied.  And then he rang my doorbell." MMT 

"Today, my 88-year-old grandmother and her 17 year old cat are both blind. My grandmother’s guide dog leads my grandmother around the house, which is normal. But lately, he’s been guiding her cat around the house too. When her cat meows, he walks up and rubs against her, and then she follows directly behind him to her food, to the litter box, to the other end of the house for a nap, etc.MMT

"Today, I told my 18 year old grandson that nobody asked me to prom when I was in high school, so I didn’t attend. He showed up at my house this evening dressed in a tuxedo and took me as his date to his prom. "MMT

Well, that wraps up this Valentine's week...


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Thursday, February 13, 2014

Freedom of Speech

Some people, take their freedom to speak what's on their mind quite literally.  I think some people think their freedom to speak means they don't have to take into consideration their audience, the topic of their speech or if it's any of their business at all!

Tuesday night, before arriving at work, I had to make a quick stop at Walgreen's for some essentials- double sided mounting tape! Apparently, half the town needed essentials as well and both registers were backed up with 8-10 people in each line.

I stood there, patiently, minding my own business, entertaining my mind with magazine headlines on the nearby display.  Quite unexpectedly, the middle aged, nothing to look at man behind me, leaned into me and said, "You know...You should probably consider having a milkshake...or two."

I turned my head slowly, almost slo-motion because I was both confused, and stunned at the remarks of a total stranger. With a tilted head, I looked up at his empty, selfish eyes, "What?"

"You should probably go have a milkshake or two." He repeated.
"I'm good actually."  It was about the dumbest thing I could have said but really, what do you say?  How would you even have anything planned in your head...If a stranger ever tells me I should have a milkshake...I'm going to say.... Who treats perfect strangers like this?  It felt like the store had come to a screeching halt while everyone stared at me!  My face was on fire, flushed from embarrassment and anger. What I really wanted to say would not have been appropriate and probably would have ended with my fist in his throat and collection of cop cars outside with an escort to jail! Since I have kids to take care of, I decided that I should probably not waste my energy on him.

He didn't stop there..."I can see that you are good!  You are certainly toned and trim but you might consider a milkshake or two."

Thankfully, I was up to check out and did so quickly and rushed out to my car.

I would like to say that this was my first encounter with idiots, but it wasn't.  Why is it, that it's okay to speak your mind to a thin person but if you told an obese person anything of the sorts, it would be harassment?

Would you ever tell an overweight person that they should consider the salad bar instead of the burger bar?  NO!! It's none of your business.

I have had these kinds of encounters with doctors even.  Their long winded commentary on my shape drives me crazy, but it's never really directed at me, it's just little statements or undertones they mutter under their breath during an exam.  I highly doubt that they say to the overweight girl... "Wow, sorry this is taking so long, there are so many rolls I have to move out of the way."  It's a ridiculous thought!

How can people, total strangers be so thoughtless?  What did that guy really think he was gaining by being rude like that?  This world is beyond crazy!



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Wednesday, February 12, 2014

IEP meeting done

Well, another IEP meeting has come and gone.  What a disappointment, I have nothing funny or sarcastic to say about the meeting!! That's why I am disappointed!  I thought for sure it would be a joke like the rest of them have been but it was actually pretty decent.  I am surprised and relieved.

The only downside is that it makes for a boring blog post.

Sam did however, manage to get his English back up to a 'C'!  That's my boy! He got that 'F' Fixed just like he said he would.

I'm not sure what it is about this school district but we had a great experience in elementary school.  Middle School was pretty successful and the Special Ed staff and Administration were awesome.  Junior High, the wheels always fall off our little cart, we spend two years falling apart and failing classes and I'm not sure why.  It has been that way with all three of my kids.  By the time we get to High School, my attitude leaves a lot to be desired and I am tired of the run around so I don't play very well because I just expect a load of crap like Junior High.

I am always surprised when they pull it all back together!  With all three of them! Today, they renewed my hope in this broken education system.

I am still a little leery of their plan for Sam for next year.  They plan to mainstream him to a Geometry class.  It sounds like a train wreck to me but we will be open and give it a try.

Sam will be missing a lot of school when we go to Seattle and that will be hard but it seems like everyone is on board so I hope it won't do too much damage.

We can all breathe a little easier now that that is behind us!  God bless the Special Ed teachers and the new Principal!

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Monday, February 10, 2014

The longest month

This is how I feel about February!!


Is it just me, or is this in fact the longest month on record?  It is dragging on and we aren't even half way through!  It seems like we should already be into May or June!

Life is humming along with its usual upsets.  Job issues seem to be the theme of the days and months.  I had an offer for a full time position in an office as a secretary- a couple actually but, I declined them both.  I know, sounds stupid.  They were both 8-5 even longer.  I gave it some thought.  I really did.

I tried to convince myself that the kids don't need me, they are old enough to take care of themselves but this nagging feeling told me otherwise.

They are plenty old enough to take care of themselves but there is something vitally important to me, that I am at the crossroads of their day as long as they are living under my roof.  I believe that the employment sacrifices I have made since getting divorced is what has kept us close and kept the kids from wandering off into dark places in the world.  Not that that still can't happen, but my presence helps them feel that they are my number one priority, even before making money and buying things.

There is something different about raising kids with chronic illness.  They are years beyond mature when it comes to a lot of things but some of the basic things, they are very behind in.  I have worried about this a lot and bring it up from time to time with psychologists but the answer is the same.  It's normal for a kid with chronic health issues to need the emotional support of their parents long after their peers have flown the nest. It's something I still haven't really grasped or understood.

There are a lot of difficult things going on with us right now...not to bore you with the details but the timing of a full time job is just not good.  So, for now, it's back to the drawing board.

In the meantime...I really wish February would march on and move on!  Sam's IEP is tomorrow; that should give me plenty of blog fodder and get some pent up sarcasm out, so stay tuned for that!  Shelbie has her transfusion from Hell on Thursday and that about sums it up!
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Tuesday, February 4, 2014

IEP Meetings

It's my favorite time of year!  IEP time!  Ya, it's not really my favorite time of year, I just said that to be cordial.

I hate IEP meetings, I especially hate IEP meetings that they invite my IEP child to.  There is always some degree of damage control to do afterwards.  I do however, really like the team we have this year and they have been pretty good to work with so that is a plus.

Sam's Special Ed teacher called me today to set up a time to meet.  He said that they have invited someone from Vocational Rehabilitation here in town to come and visit with Sam about transitioning to the 'real' world as an adult with ADD.  Here's where it got kind of funny, in a sad sort of way.

I said, "Um, Sam doesn't have ADD."
"What do you mean he doesn't have ADD.  It says right here that he is on a health IEP because of ADD."
"Nope.  He's on a health IEP because he has a rare bone marrow failure disease, dyscalculia and dyslexia."
"What?!!! This is news to me! But, he doesn't really act like a kid with ADD so I always wondered about him."

I'm thinking...how can this be news to him...shouldn't school records follow the kid each year?  He's been on an IEP since 4th grade.

"Ya. So, why do we need Vocational Rehab there?"
"Well, they want to create a plan for transitioning Sam after High School."
"So, the situation is such that Sam is pretty overwhelmed right now with everything going on healthwise and his classes, so to ask him to consider his future at this point, is going to be too much for him."
"Well, he's standing right here beside me and he doesn't look overwhelmed. What's his prognosis with this disease?"
"I don't know.  His marrow is only functioning at 15% right now and there are only 3 kids in the world right now with this disease so there is no literature on life expectancy."
"Well, he's standing right here beside me and he doesn't look sick.  He is so mature and responsible. I didn't know he was dying."
"He's not really dying...I mean, we don't really look at like that...it's just a hard time right now and before we focus on what Sam is going to do in 3 years, we need to focus on how we are going to get Sam out of English and Math class this trimester."
"Okay, well, let's just plan on vocational rehab meeting with us.  It's not really about academics anyways."
"Alrighty."

For me, it's all about academics.  I could careless about a year from now...let alone 3 years from now!  I am cutting this guy some slack because he was seriously caught off guard. I could feel his discomfort and confusion and then to hear that the kid standing beside him is one of three people in the world with a fatal bone marrow disease...I can see how nothing really made sense in the moment...I had to chuckle.

When I picked up Sam, he asked me what that phone call was all about.  He said his teacher just kept staring at him.

Funny.  It's funny in a sad sort of way.   I still really like this IEP team...I can't wait to overwhelm the Vocational Rehab lady.  She thinks she's coming to transition an ADD kid...boy won't she be surprised! LOL.


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Monday, February 3, 2014

29 Gifts Reflections

I can't believe I finished 29 days of gift giving!  It was much harder than I thought it would be but much more rewarding too.  It really opened my eyes up to the kind of world we are living in.

It is a closed off and isolating one.  It's as if people don't know what to do when a stranger does something nice, it seems so foreign to most; at least that is what I gathered from just about everyone I encountered.  Kindness?  Foreign? Yes.

I have always known, that the best way to deal with your own problems in life is to get out and serve.  It is a belief I have had since I was a teenager.  Looking back, I think the only way I survived those horrible teen years of my own was because of the opportunities I had to serve.  I think it was God's way of preparing me for the life I have found myself in.  Service was always an important principle taught in my family and it is a principle I have tried to instill in my own kids.

When they are being swallowed up in self pity, self righteousness or plain old fashioned selfishness, I throw them in the car and we find someone to serve.  My favorite has been the nursing home but I can't get them to go with me much anymore because they would become attached to people there and then they would die!  We have been to so many funerals of some of the nicest people we met through service.

I knew when I encountered my own foreign feelings of self pity and sadness, I had to find a way out.  There were some days in November and December that I was, in a very literal sense, trying to find a way out.  I wanted nothing more than to run away and disappear and leave the problems for someone else to deal with. The despair and fear I felt were overwhelming and mind blowing that I could reach such deep and dark depths with nowhere to turn for relief.

When I left the house, I pasted on my best phony smile and cheerful can-do attitude but all the while, I was stuck inside, clawing my way out of the life I have come to hate. I was tired...still am, exhausted and my mind is so stretched beyond it's limits, my memory is sketchy at best. Everyday felt like I was stumbling to stay ahead of the madness.


When I saw the book, 29 Gifts...I knew it was 'my way out.'  It has saved me and given me a second wind for this next leg of trouble we face.  I feel closer to my Savior than I did in December.

Here's what I learned in 29 days...

  1. Placing intention on something like giving, is planting it in the rich soil of potential. I had no idea until now, the potential in giving.  The potential it had to save me from my own self pity and sorrow. 
  2. I learned more fully about abundance.  Giving brings more.  I woke up each morning full of thoughts on how I would make someone happy.  It filled my mind with abundance; of something more than work I hate, doctor appointments and the suffocating thoughts of 'what if.'
  3. People have learned to live on 140 characters, sitting in an isolated world of our own, touching each other through technology only.  When we set the phone down, we rush from task to task with barely enough time to stop and say hello to a friend we see in the grocery store.  We hurry behind a display in hopes of avoiding a conversation with people.  We pretend we don't see each other but then give a warm 'thumbs' up on Facebook later that night when we discover she has come upon hard luck. 
  4. I have learned that we are way too busy to care about people like we use to.  It's a sad day when such a small, inconsequential act of kindness surprises people to an unbelievable degree!
  5. I have been reminded that although I may not be wealthy according to the standards of the world or even to the degree of friends and family, I am blessed and spiritually, my portfolio is looking pretty good.    

Finally...if you remember the rules for this project, I had to give away one thing I needed for myself.  Of course, I'm sure money came to most people's mind but that was not it although, some of these gifts did require me to spend money but somehow, it didn't seem to affect my bottom line all that much.

No, the thing I gave away that I needed myself, I gave all 29 days.  Understanding and Non Judgement.  Those are two things I have always needed in life.  Living with such a rare and chronic condition with the kids has kept me on the fringes of everything in life.  Everything, in every way.

I have spent nearly everyday being judged in one way or another.  I chose to serve someone in every phase of life, in varied situations that I have found myself in before.  I chose to serve them without the judgement.  The high school kids and the 13 year old were important gifts.  How often do we think that teenagers are up to no good and just a bunch of trouble makers without a working frontal lobe?  I wanted to give them a break.  I remember age 13.  I hated age 13.  I wanted to bring a little joy to a 13 year old.  I'm sure she loves being 13.  I'm sure her life is nothing like mine was but it was important to me, to acknowledge her nonetheless.  I haven't been homeless or sitting in a nursing home but I have had plenty of days of feeling lonely.  Not just alone.  Lonely. I tried to help the tired mom with tired toddlers, the single mom with teenagers because that burden is something others really don't grasp.

I wish I could say which gift was my favorite!  The nursing home and the homeless shelter had the greatest impact on me.  I was super excited about the anonymous pizza delivery...I loved them all!

If you want something in your life, I know without a doubt, especially after the past 29 days, that you have to give it away first.  When you make sure someone else has what they want or need out of life...it will always come back to you!

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Saturday, February 1, 2014

29 Gifts Week 4

I can't believe the last week of my 29 Gifts project is over!!  Here is the recap!

Gift 24- I made these little bunny rice bags to take to the Pediatric Oncology clinic.  I thought it would cheer the kids up to have a fun little, warm rice pack on their port before getting chemotherapy.  It's the same clinic where Shelbie had two years of chemotherapy so I have a tender place in my heart for kids having to do chemo treatments.

Gift 25- I wanted to give something back to teachers.  I love seeing teachers who still love to teach and who are happy being teachers.  So many are grumpy and cranky.  I know a really great teacher in a local elementary school.  I covered these clothes pins with scrapbook paper and glued a thumbtack on the back so they can use these on their bulletin boards and clip their kids' artwork in a cute and unique way.  They turned out pretty cute.
Gift 26- This was a major gift! It was Shelbie's idea and she signed up for her and her friends to make and serve dinner at the homeless shelter.  It was such a huge undertaking, I asked if I could be involved too.  I was the head chef!  We had such a great time, a humbling and reverent time.  I am going to dedicate a entire post this week to talk about my experience there but suffice it to say...we all left there different than when we went in.  Thanks to two good friends, Sally and Barbara, we served homemade rolls and green beans.  They were so kind in their contribution of these items and made all the difference.  We served about 75 people.
Gift 27- This day, I gave to the teenagers in town.  A car full of high school students got a sweet surprise when I ran up to their window and handed them a gift card to pay for lunch.  Can you tell I really like surprising people with food?  Not sure what that's about but it is so fun!!  They probably thought I was loony but I don't care.
 Gift 28- Blogging is one of my favorite things to do.  Some blogs have hundreds of thousands of readers.  I don't have that many, not even close but I appreciate everyone who shares in our story.  I have been able to use my blog to get me into the world of writing and because of my blog and the number of people who read it, I have been able to write for some big companies like Walgreens, Clipix, Animal Planet...to name a few.  To thank you all...I made two of my favorite quotes into free printables.  If you haven't seen that post yet, go HERE  and download a copy for yourself and your friends if you want!  Thank you for reading!
Finally...Gift 29- I have been thinking about this gift for several days.  I have a dear friend whose son is waiting for his second liver transplant and it's only been a few very short years since his first one!  He is young and has a baby girl and a lovely wife this time around.  He is very close to the top of the transplant list, if not the top by now and he is very, very sick!  Dealing with this kind of thing can only be anything but hard.  I know my problems pale in comparison to hers but I know how fast fear and worry can creep into a day when you are least expecting it.  I wanted to 'fill her bucket' a little with some gifts of 'comfort and joy'.  I know I can't make things right... but I can cheer her up in a small way...a bit of a respite.  She is one tough cookie and an amazing mother!  I included some uplifting and fun books on motherhood, my favorite CD by Mindy Gledhill called The Sum of Grace.  I also filled it with Hershey's Hugs and Kisses and wrote my favorite scriptures of 'Hope' on the bottom of them!

Wow...29 days of giving.  It has been an interesting undertaking.  Stay tuned for my final thoughts on this project on Monday!  In the meantime- remember that one of the rules for 29 Gifts is that you had to give away something you needed yourself.  If you have been following along...can you guess what that was?  Leave me a comment. I would be interested to know what you think.

Thanks for following me on this journey of discovery and gift giving.

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