Monday, June 26, 2017

Hold on thy way

We have had a tumultuous weekend!  I think a couple of posts back, I predicted some rough waters coming and come they have with Tsunami strength.

On Friday, out of the blue, I got a call from our Neuroimmunologist's nurse.  She told me that our doctor had opened up a couple of hours in her schedule in two weeks in order to see Shelbie.  I asked her if she had received results from Duke University but she said she couldn't say for sure.  So, I'm not sure what that will be about but we will be there.  I'm a little nervous but I believe that this might be the workings of God.  Shelbie is still not moving fluid from her lower extremities and she still has open sores and weeping.  It's a good time for this doctor to see what is going on and has been for weeks.

Spencer has just been struggling so much.  The poor kid never gets a break!  I mean never!  His car broke down.  It will need a new transmission and he doesn't have money for that.  He's been looking for work but his efforts have gotten him nowhere.  He's just in limbo.  But bless his heart, he keeps on trying to do what's right.  He tries so hard.  I don't understand exactly what God is doing with him but I have to believe something good is coming for has to be!!  He has suffered for two solid years, since the very day he returned from his mission.

I don't blame him for wanting to give up.  In my coaching him, all I could think of were the words...Hold on thy way... When everywhere you turn brings more questions and fewer answers, remember what you do know.  I pointed out to him that although this looks and feels like another setback, he is surrounded with blessings.

I thought Sam was doing okay, besides pneumonia...but he's not.  That boy is so good at hiding his feelings until a point.  Well, that point  happened on Sunday.  He and Spencer had been in Salt Lake for the Nitro Circus show and on their way home Sunday, Sam got lost.  He was driving and somehow, no one was paying attention, ended up an hour West of Salt Lake instead of headed North to come home.

It's a bit of a funny story...He had a friend with them as well.  He is in 11th grade I think and his parents were a little unsure about him going with my boys overnight so they had been tracking his phone.  Well, an hour into the trip home, they called very angry!!  They thought he had lied to them about leaving to head home and here they were out past the Salt Flats.

The sad part of the story is that this is Sam's Dyscalculia raising it's ugly head!  He didn't know he was lost.  I think that was the last straw and by Sunday night, he was a mess.  I had tried all day to get him to talk but all he wanted to be was mad.  About 11:30 that night, he came into my room and flopped across the foot of my bed and cried and cried.  He has two more friends leaving on missions this week.  He is not keeping up at school, and...still feels pretty lousy with pneumonia.  He was feeling pretty worthless, and despaired.

About an hour into our talk, Spencer came in to provide 'back up'.  I was so grateful to have help.  Spencer was able to give Sam a blessing and it helped I think.  I convinced Sam to spend the night at home and take the day off from school today which he did.  He slept for 13 hours!! He got up and ate  a late lunch and started on some homework but could not stay awake.  He got nothing done and now he is even more behind!! But, he probably needed the rest.  His lungs still sound horrible.

As I sat on my bed with each of my kids as they spoke of the hard things they are going through, I had this overwhelming thought...

    put off thy shoes from off thy feet, for the place whereon thou            standest is holy ground.

I haven't always been able to look at these kinds of struggles with any degree of holiness, mostly frustration and even anger at times.  Clearly, I have grown up in my parenting just a bit.  I don't like watching people struggle.  I especially don't like watching people make horrible decisions that will clearly make their life harder than it needs to be but I knew in those moments, that God was working something within them. He was building them...building their character.   There was a wrestle in their spirit that could almost be seen with my physical eyes!

This kind of thing has never happened before.  I was grateful for the moment and will count it as a blessing.  Nothing great came of our talk.  They felt heard and validated; witnessed but nothing was solved or resolved.  Maybe it wasn't nothing...I hope they left feeling safe and loved no matter what!

It has always been an interesting thing for me to watch how God chooses to scatter us or how sometimes, we scatter ourselves.  Whether he scatters a nation, a people, a family or an individual...there is purpose in the scattering.  It may be painful and difficult, lonely and isolating but it is never a waste of time.

I think it's safe to say, we have been in a season of scattering.  What a beautiful thought to consider all the ways God gathers us back.  In a way, these long talks I have with my kids in the midst of their trials are a gathering.  I hope they will always know where they can go when the winds of the world, knock out their power, shift their course and scatter them about.  Wherever I am is where I hope they know to gather!

Until we get past feeling scattered, we will hold on our way!
This song is just because I like it and it seems fitting.


Saturday, June 24, 2017

Good Intentions

I'm calling today's post...good intentions because good intentions were plentiful on this beautiful Saturday.

I had all kinds of good intentions for today.  I had high hopes to fix Sam's bed, wrap up some projects that have looming deadlines and that's about it!  I figured I had a good 9 hours of drafting to do today, a job site to visit and all that was after I worked in the temple this morning.

I took a nap last night from 1:00 to 3:00 am then got up wondering where Shelbie and her friends had disappeared to but left every light in the house on...girls!  They got home after a little field trip up to the Teton Valley, around 3:30 am and then I went back to bed until 7:00 when I got up to say goodbye to the boys.  They are going to the Nitro Circus performance in Salt Lake tonight.

Back to my day...

Instead of leaving the temple promptly to start my well thought out day...I ran into an old acquaintance at the temple who was substituting for a shift.  We aren't good friends but we are stop and visit kind of friends.  Her father was well known in the higher up circles of our church and wrote many great books.  My friend M. always has the greatest stories and touching, inspiring thoughts and she genuinely cares about my family.  Her husband died in a glider plane crash the year I was divorced so she's been single a long while too.  Our visit was over a half hour but what a great use of my time this morning.

When I got home, I was so sick of my dirty, dirty car so I decided to do a quick wash on the driveway.  This turned into a two hour project of detailing the inside too.

The girls finally woke up and wanted lunch so we headed for a greasy but good Big Jud's burger.  Then it was Walmart...job site...and finally home to start working on the computer...except...I was so tired, I took a nap!

Who naps on a Saturday night?

Long story short...I'm behind...still but that nap felt amazing!  I should really try sleeping more.

All kinds of good intentions...

Also, at the temple, I ran into some people I know and they said, "Why is your hair grey?" I love the shocked response I get over my never gets old! Yes it does!

"My hair is grey because God sees fit to bless me with a grey hair kind of life!"  and then we had an awkward laugh.  Good intentions I know...but still!  Enough with the hair comments!

At Walmart, I was in the toilet paper aisle.  Toilet paper is the hardest thing in the world for me to buy.  I always feel like I'm getting ripped off so it takes me 20 min. to actually calculate which brand give you the most square footage for your dollar!  It's a problem I should probably talk to someone about!  LOL.  Anyways...I'm doing  my thing and this incredibly handsome young man walks past me and then doubles back.  He was probably in his late 20's.

"Excuse me?  You're not married?"
"Me?" as I look around to find someone young and gorgeous he might be trying to pick up.
"No.  I'm not married."
"Oh my gosh, you are beautiful.  You should be married. There has got to be some lucky guy waiting to find you."....It was something to that effect.
I think I snorted while chuckling..."Well, thank you! That's the nicest thing I've heard all day."
"You're welcome.  I mean it."
"Thanks!"  and then he walked off.

I'm pretty sure that this guy was with his friends one aisle over, having a game of truth or dare and I was their target.  At least he said something really nice as opposed to throwing a water balloon at me! Anyways...good intentions regardless.

So that was my day!  I did get one project sent off tonight and now to clean this mess of a house!  


Thursday, June 22, 2017

Proof there is a God

Okay, this is another health insurance rant...because, why not?  I feel like ranting this week and it just so happens that this week is all about how to drive me crazy.  The best way to do that, is mess with insurance and medical bills.

Yesterday...I got our EOB for Sam and Spencer from their immunology appointment on May 12th.
Here is a picture of one EOB...for one child!  There is another one coming...

This is my reality...$7,248.37 is what our medical expenses are for Spencer for one month!! I will be getting a matching EOB on Samuel soon for close to the same amount since they both had the same tests done at Immunology.  Over $14,000 for the two of them alone in one month!! Not only that, even with bills like this, I still have $3000 more dollars to pay before I have reached my out of pocket maximum and insurance starts paying 100%.

It takes me just over 4 months to make $14,000.   In 6 weeks, Samuel will be costing me an additional $10,000-$13,000 a month for the rest of his life as he starts plasma transfusions.  If any one of them decides to move out of network...we will lose coverage until open enrollment time.

Are you overwhelmed with these thoughts?  Me too.  Everyday, I worry about the day I can't afford to keep this up either because I can't work, run out of work, lose insurance or the very real fear that insurance will become completely unaffordable.

Having a chronic, life threatening illness is expensive in every way.  It's demands a toll be paid that you don't have financially, or emotionally. all the math that doesn't add up, we find GOD.


These tests and the billing was done exactly 36 hours before Samuel lost his insurance.  36 hours is not very long.  One day...if his appointments had of been just one day later, this bill would likely be 100% out of pocket.

So, I am feeling blessed in a small and mighty significant way.  I have all the faith in the world that God can continue working miracles like this.  My faith waivers in myself; my own ability to put all I have in the Lord.  To trust that somehow, it will all work out.  To trust that maybe I can work 16 hour days even though 14 is killing me.  God never seems to make it easy but he always seems to make it work.


Wednesday, June 21, 2017

Borrowed Trouble

365+ Quotes, Facts and Wisdom on Dream, Life and Future | #quotes #facts #motivation #inspiration #wisdom #success:

Had another small blow to our stability this week...after the insurance debacle with Sam, I got a letter from our insurance company, yesterday, to say they will no longer be servicing us as of January 2018. They are pulling out of the exchange.  Their reason is that it is not profitable for them to serve individuals.

At first I felt my blood pressure rising and my anxiety edging into panic but then I caught myself.  Open Enrollment is still 5 months away and lots can happen in 5 months.  I have been with Bridgespan since 2015 because they were the only company I could afford, even on the exchange.

I was listening to some podcast about a couple who was complaining about not being able to 'Invest' in healthcare...what exactly does that mean?  If I invest in something, I expect to get a return, bigger than what I started with.  I must be 'investing' in the wrong insurance company because I am in the red by $25,000 with my 'healthcare' investment.

I don't want to get political and poor me but seriously...I feel like Washington has no clue what it feels like to do this day in and day out.  I work harder and longer than any man I know.  I don't use public assistance of any kind and yet the ACA and the new plans Trump and his chimps are churning out for a revised healthcare are completely out of reasonable reach to a family like us.

I can't go get a full time, normal job because of the situation with my kids and even if I could, the employers aren't offering benefits.  That leaves an individual having to scrounge up some insurance- on the exchange.  Now companies are bailing from that because it's not lucrative so it's a vicious circle.  What is a person like me suppose to do?  Without the exchange,  I will be looking at premiums for my high risk family over $1000 a month with a $13,000-$15,000 deductible.  I work 14 hours days, even when my kids are sick or in the hospital. I can't work any harder than I do.  I am taxed a regular tax and a self employment tax and that adds up to about 30-35%.   It feels like a no win and I'm not sure what the answer is.

I heard someone say last week, "There's no sense borrowing trouble from tomorrow." That's a pretty true statement!  So, I'm going to adopt that mantra for now.  We have plenty of trouble today.  

I've been going to the gym faithfully everyday.  It helps me get rid of some restless energy.  I have to laugh at the warning sign on the machines...I feel pain, faint, dizzy and short of breath just getting myself out of bed in the morning.  I really should consult a physician about the dangers of waking up every day!  Especially if I wake up with a 'Quick Start'!

There's my feeble attempt at humor today.

Anyhow...Sam seems to be improving.  I've been thinking about the plan to keep him on antibiotics indefinitely and I don't think that is going to work very well.  He's my child who gets C-Diff at the drop of a hat so that much medication will kill his already shredded GI tract.  That will be something to sort out when we get to the doctor's appointment for follow up.


Monday, June 19, 2017

Not An Option...

It's been sort of a crazy weekend.  Sometimes, I don't realize just how hard and crazy until, from out of the blue, I start having a little anxiety attack and hit panic mode.  And oddly never happens in the moment.  Tonight, it happened at the gym while on the elliptical.  When I realized I was crying, I looked down and was going 10 mph and had already logged over 2 miles!  It was as if I was running away from my life.  I thought my heart was going to pack up and leave for being worked so hard. Anyways...

Sam has pneumonia again!  I think this is the 4th time this year.  He's had a cold for over a week and then Sunday morning, spiked a fever.  A sudden rise in temperature after a week or more of a viral illness is almost always something serious.  Sam has always been in tune with his lungs so when he came home flushed and fevered, I said, "Well, do I need to take you in?  Do you think you have pneumonia?"  He nodded yes.  So off we went and that was confirmed.

So, before going back home, I stopped at Walgreens to fill the scripts and they told me I didn't have pharmacy coverage. We went back and forth and I made them call my insurance company.  Sure enough, they confirmed that it had been suspended.  The pharmacist said, "So, do you still want to get these medications and pay cash?"

I'd be lying if I said without hesitation that I would take the meds.  Instead, I had this little debate inside my head, wondering if Sam would live without it and by some miracle get better.  But, he is winding up at school and he really can't miss anymore school so I bought it.  Spent the last money I had for two weeks. So...I was a little bugged.

Today, I spent two hours on the phone being shuffled from one source to another trying to figure out what happened.  The problem is, we have three different insurance companies between the four of us.  Sam has his own policy that I pay separate premiums and what not for.  This is not by choice but by Obamacare, 'He' dictated what we each would get.  What Sam has, falls under the umbrella of Medicaid only not the free Medicaid...I pay just like I do a normal policy which makes no sense. When Sam turned 19 in May, they just dropped him off the plan but didn't add him to another. So, for a month, he has had no insurance which means...I've got some major bills coming my way!

The last person I spoke to was very helpful and after gathering the facts and assessing the problem, she said, "Okay, let me put you on a brief hold and try to sort out what in the world happened."

"No!!! (practically yelling at her) You can't put me on a brief hold! I am about to have a stroke that my son hasn't had coverage for a month and I just need you to tell me that you will be able to get him on my policy even though it isn't open enrollment time or now that coverage has lagged...preexisting condition problems. I just need to know that you feel confident I will be today, it will work out..."

"It's going to be okay.  I'll fix it for you.  Everything will be fine.  Is it okay if I put you on a brief hold now?"

She probably got off the phone  and yelled across the room of operators to her manager Bill..."Hey, I've got a whoopticopter on line 12, I'm gonna need back up!!"

To make a long story longer...Sam won't be able to have insurance until July 1st.  I am a wreck.  I want to wrap the boy up in plastic bubbles and put him in the back of my closet until July 1st. I have no choice but to storm Heaven with prayers that nothing happens to him...and he is suppose to be going to Salt Lake this weekend to Nitro Circus.  Ugh... The woman at Idaho Health was really nice.  As she was typing away, she injected little updates like...Well that was easy...Nice, not a problem there.  I think she was just saying that so I wouldn't start crying.  When we were through, she said, "Now, are you going to be okay? I want to make sure you will be alright." LOL!  I will be okay, it shakes my core sometimes.

Not having insurance is NOT AN OPTION.

I texted our doc in Utah to find out if he had made a plan for the boys' immunology health and told him Sam was sick again.  His response was that he sent me an email with his concerns for the boys but especially Sam.  I didn't get that email.  He is out of town but we will head down there in the next couple of weeks.  The doc told me that he wants Sam on antibiotics indefinitely and will likely start plasma transfusions as soon as we can get that authorized.

I told Sam what might be happening and he is pretty upset.  It kind of changes everything now.  No mission for Sam.  That's pretty heartbreaking but I'll save that for another post. And...$26,000 in medical bills per month is giving me an ulcer.  I have no idea how we are going to make it even with insurance and come July 1st...I start all over with deductibles!!!  So maddening.

Then...May called me this morning and the Sheriff had arrived at the mental hospital to transport her back up here to the County Jail.  I feel sick for her.  She was going to try to call me once she got here, if they would let her but I didn't hear back.  She will have to see the judge and then who knows.  Does this seem like it can even be real?  She is 86 years old and could be my grandmother and she is sitting in a jail cell tonight.  I feel sick.  It shouldn't even be an option! If they don't let her drive...then what is she going to do.

I am actually not surprised by these turn of events.  We have had a little break to regroup, and sometimes, I think God creates these breaks to teach us new things for the next round of fiery furnace trials.  I have had these amazing streams of consciousness and increased knowledge and understanding so it makes sense that he will now create some opportunities for me to practice what I've learned.  How exciting!  How scary...I guess digging in my heels is simply...not an option!


Father's Day

 Today I honor my dad.  

There are the typical stories of how much fun we had growing up.  The games, the made up songs and scary stories on warm summer nights when we went camping.  He was always up for an adventure whether it was a mountain to climb, a river to run or some culinary experiment in the kitchen and we had some of those...namely, some sweet and sour sauce that really became a sweet and sour wallpaper paste.  I think we ate it anyways! 

He has always had the most fun with my kids.  There have been times when  he surprised them with his dares and challenges and it made me laugh.  He has taken an interest in their hobbies and hopes and they have always felt loved by their grandpa. 
When I think of my dad...I think of his smile. 

Mom and Dad, Shelbie and Sam in Jackson in 2014. 

Four generations of musical talent.  I love this picture.

This past little while, when I think on why I love my dad, I love that he has been a worthy, righteous man of God.  I love that he loves my mom.  I love that he is a critical thinker.  Whenever he is faced with a problem, he spends a lot of time pondering the solution.  When we were growing up, he rarely raised his voice in anger.  When we would get ourselves into trouble, he would take some time to cool down and think about the consequences.  I've tried to do that as well, but I'm not that good yet.  

I love that he facilitated my mom's hopes and dreams.  He carved out a place in his business for her to excel in hers.  He always supported her porcelain doll hobby and business, hair dressing and quilting. Not only  did he support her in her dreams but he really showed a great deal of interest in them, attending doll shows and getting excited when she won so many awards and ribbons.  

Those are a few things I love about my dad.  Our family has been blessed with his protection, and provisions for us to be the best family we could be.


Thursday, June 15, 2017

Planning for Happiness

I spend more time than most, it seems, worrying about the amount of suffering I feel.  Somehow, I have this idea that if I'm not happy, then I'm failing at life.    Maybe it's because of adages like...

"Life is what you make of it"
"You can choose to be happy no matter what."
"Happy mind, Happy life"
"Life is 10% what happens to you and 90% how you react"

I seriously obsess about the fact that I'm just not trying hard enough to have a good attitude because people who are perpetually unhappy are choosing that.  Apparently.  It bugs me to think that I am choosing this hard life.  It bugs me to think that other people think this about me and I know that they do...I see the little smears of pity on the corners of their lips, as they pretentiously say, "When is life ever going good for you?"

Well, how embarrassing that God sees fit to keep my heels pressed to the refiners fire.  Shame on me for not being overjoyed with the revolving door of trouble...but then again...maybe if I had a better attitude, it is really a revolving door of happiness!

 Then, it doesn't help that we open Instagram or Facebook and see these perfectly, perfect images of people winning at life.  The room that is pulled together in a flawless state.  The love birds, the hunny this and girl of my dreams that. Amazing trips to incredible places.  There are challenges galore that dare us to be happy for 30 days...or worse...100 days.  They call them projects!  Projects?  To be happy?  Is that what happiness has to be...a project?

We rarely post about our mediocre lives.  Why is that?  We are all, nothing more than mediocre so why keep up the pretenses of perfection?  I'm going to start the Mediocre Project. I think maybe I will post pictures for 30 days of my unmade bed, how mediocre is that?  It's so mediocre its perfect!!

So, anyways, my point is...that crap we tell each other about happiness? Is nonsense.

Nothing that builds character, empathy, compassion, courage, peace and even joy, comes from moments of happiness.  Those deep traits of unchanging character comes from...
Suffering...the deep waters, the grit and grime of slogging through life, the trials, the refinement, the setbacks, the lousy decisions, the anger, the words we shouldn't have said, the loneliness, the struggle, the dead ends, the fears, the obsessions, the backtracking. the stumbling, the less than perfect...why would you want to miss all of this juicy suffering for a dip in the shallow end of


Happiness is not what life is about.  It's a rest stop.  A fleeting moment before you hit the trenches where the real experience and meaning of life is.

Surprise...if you are suffering in life, congratulations!  You are well on your way to a real, human experience that money can not buy.

So, how about these adages...

"Life is all about how you suffer! "
"You can choose to be happy, or you can stay in the arena and wrestle with the struggle."
"Happy life...shallow human being"

Seriously though...How do you like this quote from David Brooks...He is seriously my new obsession and joins the ranks with Brene Brown, Deepak Chopra, Byron Katie, Hafiz...

"Someone in internal struggle is building themselves."

How much better would life be if we really understood this and stopped judging each other's building or worse, tearing down what we work so hard to build?  Life is messy and hard and that's all there is to it.  The secret to suffering is that we suffer well.  How do you suffer well?  Make something out of the suffering.  Give it meaning.  Do something productive with it.  Connect with another suffering soul, witness their soul searching, soul building; blessings disguised as suffering.  As Ram Dass said, "We are all just walking each other home."  I love that thought.

Tonight, I shared a real, honest moment with a friend at work.  We dumped all of our suffering out on her desk...her husband's cancer, her ne're-do-well child, my kids, my jobs, the chronic everything...and stirred it all together, and sifted and shared and laughed and cried a little inside and witnessed each other and worked a little on her building of her soul and a little on mine and it was awesome!

We are all just mediocre doing the very best we can...what a holy place that can be if we let it.

Finally..."We plan for happiness- we are formed by suffering." David Brooks.   It's a liberating thought...there is absolutely nothing wrong with a little struggle.  I feel so much better!! How about you?