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Showing posts from February, 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 hos…

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 passi…

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, prayer6:20- Begin telecommuting for Orthopedic Group in Pocatello, write article for their blog7:30- Make lunch for Sam, let the dog out, get my cleaning supplies stocked7:50- Drive Sam to school8:10- Arrive at my cleaning job and have a marvelous time, the highlight and joy of my day11:30- 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 prescriptions12:30- Home again- Begin telecommuting drafting job for builder in Pocatello 2:00- Work on drafting custom home and pool design for new residential client3:00- Layout scope of project for new healthcare design project- begin gathering resources3:30- Pick up Sam from School- visit with him and Shelbie, start cannelloni for dinner, instruct Sam and his cooking class partner h…

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!  
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…

15 Fun Facts

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

My name is Kathy but I secretly love it when people call me Kath.I had my Aura read 9 years ago...the most interesting activity I have done. 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.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 …

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!

15 fun facts about meIf you could change one aspect of your life that would bring more happiness, what would it be?Bullet your whole day.What was the most awe inspiring moment of my life in the past 5 yearsWhat is the most important thing I put on in the morning before I leave my room?If you could spend one day with three of the most influential people of your life, who would they be?What reality show would I love to be on?What lesson did I learn yesterday?What is in my purse...right now?What is something I intended to do today…

Random Acts of...

PIZZA!!!  That's right, Random Acts of Pizza!!!

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 ;) Yo…

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.

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.

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 meThe 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 boringNo Facebook for 30 days- there is nothing challenging about thatSpeak 50 slow sentences a day- Huh?  I don't get this …'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.'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…

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…

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 ar…

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 wanderi…

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."

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 …

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 s…