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 hair...it 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.
"Yes."
"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!  



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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.

BUT...in all the math that doesn't add up, we find GOD.

HOW?

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.

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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.

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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 enough...it 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 okay....like 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!


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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.

















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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?

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?



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Wednesday, June 14, 2017

What's Up?

Oh life...you can tell already this is not going to be a post about how bored we are!

Someday, maybe you'll hear that but life has been a whirlwind of events.

Last night we had another trip to the ER with Shelbie.  She has had a swollen leg for a couple of weeks and sores have broken out and just weep all day, through her pants even.  I've been moderately concerned but that worry escalated over the past few days as her blood pressure dropped to extremely low levels...95/40.  The side effects of a very low blood pressure got out of hand last night and when she had a hard time making sentences and slurring words was more her rhythm, I decided to take her in to the ER.

It's never easy for us to go there.  It's always hard to rehash the history, over and over.  It would be easy if she had something like cancer...everyone knows that.  Instead, when they ask for a history, it ends up being a monologue and not a funny one.  Although, it can be.  It all depends on my mood I guess.  Just when they think I'm done talking, they interrupt with a courteous "I'll let the doctor know." but I start in with the second verse of things they've never heard before...There are several awkward moments and they just want me to shut up and I just want to be heard so they understand the weight of the situation.  Without all the back story and details of how each organ is failing, they think we had nothing better to do with a headache than show it off in a $200/hour room!  Meanwhile, the woman they brought in on a stretcher next door is 69 with chest pain and she fills the ER with importance but we...just have some low blood pressure.  It's frustrating.

Anyways...not sure what is going on but it doesn't look like she has congestive heart failure which was my concern because of the lymphedema in her leg and low pressure.  Cardiac enzymes and EKG looked good, at least initially.  It seems that this is her vasculitis and malfunctioning autonomic nervous system creating heart arrhythmia.  It was an exhausting night. Tonight, she is sort of improving, if I use my imagination.

Out of the blue this afternoon, Spencer got a call from a kid in Utah who invited him to help video some things in Las Vegas for Wayne Newton!  Yes, THE Wayne Newton...the guy that owns the car wash there on the Strip!  Just kidding...the Wayne Newton who put Vegas on the Strip! (it sounded better in my head)  They will also be shooting video for Ferrari, and some other fast cars.  And get this...He will be staying at Wayne Newton's house!  This kid is around Spencer's age and owns a videography business...he sort of fell into it. Spencer has been trying to connect with people to mentor him so this call was a miracle!  Within an hour, he was out the door and will be in Vegas tomorrow.  

I haven't seen much of Sam this week.  Only three more weeks of school and he will be moving home.  Right now, his bedroom is in parts and pieces.  I started re-doing his bed and then lost my interest.  Oh well, you have to pick your battles right?

Lots going on around here.


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Thursday, June 8, 2017

Wonder Woman...

It's been months of ongoing stress around here...that's nothing new but as a family, we use to be so good at unplugging from the hard times to escape into something resembling fun and not tragic. We haven't done that for a very long time, in fact, I can't really remember the last time.

On Tuesday, Shelbie announced that we needed to go to a movie.
"Like, right now?"  I asked
"Yes, why not?" She said
"Well, it's 11:30 in the morning?" as I said it, I was wondering if that was even a valid reason.  Who says you can only watch movies between the hours of 6 and 10 at night?  "I have a major interview tomorrow and presentation?  I should stay focused?"  I had all these reasons that I was trying to coax my head into believing and they weren't working.  "Ya know, that's a good idea, let's go!"

Really, it was the best decision.  I use to be spontaneous with the kids but then life happened, and kept happening.  It was kind of fun to be sitting in an empty theater, at noon, on a Tuesday.  The movie the kids had selected was Wonder Woman.

I am not at all into comic people, super heroes, science fiction, good guy bad guy, beat em up kind of movies.  I'm really into movies about crazy people who defy the odds, rise above their crazy, something riveting like that.  I think the reason I don't like those kind of movies is because Hollywood had to go complicate things because now, they are all friends.  Like Batman or Bruce Wayne or whoever he is, is friends with Wonder Woman...when did that happen.  Other than Robin, I thought he just worked on his own? Now, they are all getting into each other's story line and I don't know, do the DC comic guys like the Marvel guys or are they enemies or have they never met? See...it's too complicated.

My point is...I wasn't thrilled to be seeing Wonder Woman but I was happy to be spending time away from work and with my kids!  But honestly, it was an amazing movie!  I love that she was portrayed as a gentle, woman, full of compassion and love yet had a strong sense of purpose, meaning and leadership.  So many women today are feminists but they are crude and disgusting and rude and just want to start a fight over nothing and they do it in the name of womanhood which is so offensive to me.

Spoiler Alert... (Not really...)

There was one part in the movie when she looks around the scenes of WWII, on the front lines, in a bunker with dying women and children and the men are hopeless and wounded and full of despair and women are mourning and crying and it's this overwhelming scene of suffering and she is moved with compassion. She jumps out of the bunker and straight into enemy lines and of course they open fire on her.  The film pans out and from above she is in the middle of a war between good and evil and she is shielding the bullets and it sends chills up your spine.  And actually, I think we were all a little teary eyed. It was such a clear image of how I feel most days.  It's hard work raising yourself or a family in this world.  Everyday, I do everything I can to shield my family from the horrors of the world and sometimes, we have to do it alone. And we aren't Wonder Woman...or are we?

It was so overpowering.  It reminded me of the true purpose of women.  God needs strong women.  He needs strong women who know their purpose and their worth.  Before this point in the movie, Wonder Woman didn't know what powers she possessed until this very moment.  So it is with us...we often don't realize the strength and power within us to change the world, even if it is just our little corner of the world, or a family, or a child, or ourselves!  Everyday, we shield the people we love from the evils of the world.  We serve willingly and tirelessly because it is in our very nature to care and nurture.

The men who were with Wonder Women were so incredibly respectful of her power and they worked together, each in their own strength, not threatened by each other.  It was the most powerful message and for the first time in a long time, Hollywood did something good with their talent.  Finally a message about women that made sense to me.  She was so gracious and compassionate.  I was really surprised that I like the movie so much.

You should go see it, my rambling didn't spoil anything for you, trust me!  And, bonus if you like Wonder Woman to start with.  Oh, I will say this, I was pretty bummed I didn't get to see her spin around and go from a pant suit to her swimming suit with glitter.

Just a reminder...we all have wonder within us.


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Thursday, June 1, 2017

What has become of you?

It was a rare day, the kind when I had no appointments, no streams of phone calls which is amazing since I have over a dozen design clients right now, three from out of State, like Virginia, Texas and Colorado.

On days like today, I can catch up on drawing and spreadsheets, as I tether myself to the computer and crank on my jams...Today, my 'jams' as the young people say, were Deepak Chopra,  Caroline Myss, Steven Pressfield, Brene Brown, Elizabeth Gilbert...you get the drift.  It was this steady stream of inspiring thoughts, podcasts, presentations and ideas all day long!

I know that I'm not the person I use to be, I'm not the person I want to be and somewhere in between, can feel like an exhausting race to realize who I'm suppose to be.  It's easy for me to get stuck and spin in a million things that will change nothing for me but keeps me numb to hard work of changing a self or finding a self.

Here are some snippets that were deeply inspiring today...

Brene Brown- Do not confuse communication with connection.
                        You can't narrate someone else's life
                        The minute you deny your story, it owns you.
                        Be in the scene you're in, don't play the scene you wish you were in.  (I LOVE this                                             thought...I just wish I could live this thought)

Caroline Myss- "How do you know you are on the right path? You don't betray yourself."

Steven Pressfield- Where do we get the idea that we aren't worthy?

Deepak Chopra- I love Deepak, I always have.  If you haven't read the book, The Seven Spiritual Laws of Success for Families...do that now!  I read that with my kids every summer and we would practice one law every week throughout the summer.  It was empowering!
                            Belief creates your reality
                            You can't change a thought with a thought...thoughts are born, experienced and die

And then, I heard a few quotes by some of my favorites...

 Rumi- "Why do you stay in a prison when the door is wide open?"
Rollo May- "It's an ironic habit of human beings to run faster when they have lost their way."

But the best of all... By Hafiz

This place where you are right now, God circled on a map.  Wherever your eyes and arms and heart can move against the earth and the sky, the Beloved has bowed there- Our Beloved has bowed there, knowing you were coming."

Have you ever heard such a beautiful string of words?  This quote may have changed the way I look at my circumstances.  No matter how hard, or easy, or happy, or sad, or wrong, or misplaced, or strenuous, or fearful, or exciting a moment or a place is, it's where we are suppose to be.  Every place has holiness in it.  Every place is sacred, a place prepared for us, consecrated for us, circled on a map... where we commune with the Spirit, learn, grow, change, struggle, wrestle, become.  That is the very essence of life! That's it. No matter how fast or slow we stumble and sprint through these circled places of Heavenly charting, is not what is important.  What's important is that we remain engaged to stick around and see what happens next.

It can feel more like shame to admit your life isn't all sunshine and butterflies flitting around cheerfully.  Shame can crush your spirit when the rash of bad luck strings you along with no end in sight...It is embarrassing at times.  Embarrassing that your life is so big and unbelievable!  Unbelievably hard and impossible to understand.  Feeling stuck and lost can do a number on the threads of self worth you are trying to hold yourself together with.

But...somehow, this quote is the pass, the get out jail card, a quiet whisper from God..."I've been waiting for you to get here...welcome!"  There is so much comfort in this thought.

So...What has become of you?  This journey has become you.  You are your journey; a composition of the beautifully hard life you live, the things  you can only gather when standing in divine circles on a Heavenly Map.


                         




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Wednesday, May 31, 2017

More testing

I think the last of the immunology tests are rolling in so now we wait while our team decides what to do.  It's pretty clear that Sam's immune system is in rough shape.  Spencer's may be a smidge better but not great.

No word yet on Shelbie's tests that are still pending at Duke on the Adenosine Deaminase Deficiency.  I'm guessing that test takes a chunk of time.

I was surprised to find that Spencer's cardiologist actually posted something into MyChart.  In the past two weeks of monitoring on the loop recorder, he has had 6 events of tachycardia or bradycardia, each one to be of significance.  That's a little disturbing.  His remarks are that he will continue to watch him closely.  The doctor even included images from the recording.  At one point, Spencer's heart rate dipped into the mid 30's!  I didn't even know a person could still be alive with a heartbeat in the 30's.  Apparently, my boys are defying the odds.  We see the cardiologist in a couple of weeks but I'm not guessing he is ready to pull the trigger on a pace maker yet.  Last month, Spencer had 4 problematic events with his heart.

I kind of think that Spencer doesn't even mention his heart issues anymore.  I think in some ways, it's become so commonplace for him to feel lousy.

I'm so happy to report we have had no gas leaks this week!  It's a miracle really! We are really enjoying the abundance of oxygen we have been spoiled with.  

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Sunday, May 28, 2017

Truth or Dare

We have had such an unbelievable week...gas leaks, carbon monoxide leaks, mice infestations, and this morning, I woke up to a racket in my backyard and found a herd of stray cats back there!! In my 6' high, fenced off yard. The cats looked a little beat up...seems they thought my yard was a safe haven.  I think that's a bad omen to have mice in your garage and stray cats in the backyard...Oh well.
I have been consumed with STORY this year.  Each day, I step into a story, either my own, or the story of someone around me.  We are all a part of each other's story, even if only in a passing role.  I have gotten tangled in May's story.  Every day, I take up my place in the story of my kids and every day, there's a stranger or two who crosses my path and I become part of their story too.

Here's a funny example...my hair.  Over the past year, I've been letting my hair decide what color it's going to be.  I am mostly grey and pure white now and I have grown tired of coloring it, but in a effort to let it grow out naturally and spare me the ugly stage, I've been slowly taking years of box brunette out.  I made my last move two weeks ago after my friend suggested I let her just get rid of the last bit of artificial color.  She's a hairdresser so I finally decided to take the plunge.  That's the real story...the truth.  So now...I'm all white and as the little bits of darker grey fill in, it will be natural looking.

Funny thing is...my hair is the talk at church.  Every Sunday, I get a range of comments from people I barely know.

My favorites?
"Are you going through something?  What's with the hair color?" they ask.
"I see you are having a midlife crisis...trying to be like the cool kids huh...with the white hair?"
"Still not happy with your hair color I see..."

I don't get these people really, but this is exactly what I'm talking about...who cares?  I am starting to think that they actually have dinner conversations on Sunday nights about my make believe hair crisis.  They have come up with a story to explain my changing hair color and they are so far from the truth...but they continue to dare to impose their story and opinions as truth.  It's their truth...It's not my truth.

I'm not much better...how many times we tell ourselves stories just to make sense of something we don't understand?

A few weeks ago, Sam was hurt by something his dad said and did.  I could tell he was deeply hurt and sad.  I put my arm around him and said, "I"m sorry Sam, that you are feeling sad and hurt."
His reply was the start of a story..."It's not a big deal, I don't really care."

I am really trying to teach my kids to be honest, and truthful with their feelings.  I think it's the only way we are going to get through these hard times we are facing, so I said to him, "Is that really how you feel or is that a story you are telling yourself so you don't have to feel hurt?"

He looked at me like I had just uncovered his hidden treasures..."I guess I do care but how is admitting that going change anything?"
"It is not but it's better to speak your truth than live a lie."

We talked about how it's okay to be disappointed in people, even people you love.  It's okay to admit to whatever it is your feeling.  I think there are big lessons to be learned in the stories we tell; the ones we tell ourselves, the ones we tell others and the stories we fabricate to make sense of the people and situations around us.

It's been an epiphany for me to realize this truth.  I've dared to consider how my own stories keep me small, or distant.  I've dared to not let the stories that other people tell about me, be my truth.  Sometimes, you have to stop and look at the story line you are living.  Is it true?  Is it congruent?  How is it changing you...what is it changing you into?

I think as a mom who lives with multiple challenges of being a single bread winner, taking care of three children with a chronic, unbelievable, progressing, disease, and my own dwindling health, there is no end to the stories I tell myself.  Many of which are the very stories that keep me going because sometimes, facing the truth might kill me...but still, they keep me at arms length from really connecting with this world.  I tell myself, no one wants to hear about my problems again!  That may be true but I really don't know.  I rarely venture to dare to find out the truth but continue along telling myself stories that everything is fine.  I'm fine.  We are fine...It's fine. But all the while...people around me are making up stories to squeeze me into and that's starting to not feel okay anymore.

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Thursday, May 25, 2017

Another Gas Leak

We got everything taken apart and put back together again by last night. It was tricky I guess, because it took three men to do the job.  I think the tricky part was getting the slope right in the main duct that joins the water heater to the furnace.

They assured me that everything was fine and I didn't have to call the city for an inspection.  They turned the gas back on to my house and I hesitantly decided that we would stay home last night.

This morning had to catch up on laundry, dishes and getting the house back in order.  We had a horrendous wind storm here yesterday my house was full of dirt because the workers had left my front door open because the door handle broke!  (Insert eye rolling here)

This afternoon, I thought I could smell gas again but that seemed impossible since they went through everything last night.  It wasn't long before the smell was filling the main floor, not just the basement so I called the company back that did the work yesterday.

Sure enough, another leak!  There was a leak from the gas line to the burner of the water heater.  I swear someone is trying to kill me!  How does this just happen?  I don't get it.  I don't understand how a water heater that has been installed for 12 years, been repaired three times, suddenly has three gas leaks.  It makes no sense to my simple mind.

If I wasn't crazy before...It's maddening really.  I'm feeling a little paranoid tonight and worry about sleeping here.  We have brand new carbon monoxide detectors and those haven't been registering.  The guy from the heating company said, "Well your levels of CO are only 1200 parts per million so that's good."

1200?  Shouldn't you have 0 PPM?  I want 0 PPM!!

I have this irrational side to me that wants to go out and buy a brand new water heater and start over.  Maybe that one is just too old and parts are getting corroded and leaks are common when they are so old...but water heaters are expensive.

I don't know what to do but I am extremely bothered by it all.


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Tuesday, May 23, 2017

On Second Thought

Years ago, I read a book called Practical Intuition.  It's about listening to your gut...the first time.  I have worked on this over the years, off and on.  This year, it's something I've been working on.

That first thought I have about anything...I act on it, if it's something to be done, or I'll write it down, if it's an idea or direction for my life.  It's been an interesting adventure.

Today...I'm a little overwhelmed with my first thoughts but glad that I didn't wait for my second thought.

It's been a weird day...Spencer has been out of it all day and slept on the couch for more than awhile and when he was awake, he wasn't really awake.  I kind of thought he had overdone it at the trampoline park last night.

I have been so tired all day, dizzy and a headache for the 7th day in a row.  Between us, we've almost emptied a bottle of Advil which is odd for me to have headaches.

I went down late this afternoon to get some stuff out of the food storage room and it smelled like gas. I didn't really think much about it because this has happened off and on all winter and it seemed to go away or I forgot about it.

I started dinner but had a thought to go back down to the basement.  I'm so good at talking myself out of things.  I hate to feel like a drama queen but I knew I should call the gas company.  They showed up within 5 minutes and as I walked him downstairs, I was going on about how it was probably nothing and I'm sorry to waste his time.

"You can smell the gas right?"  I asked.
"Nope." he said.

So...I was feeling like a loser to make a big deal of it but he got out all of his special tools and didn't take long before he said, "Geez...you've got some problems here!"

We have a gas leak in two places, a 1/4" gap in one area and the furnace was back drafting into the hot water heater.  There were scorched marks on the water heater.  He shut the main gas line off to the house and tape over all the gas connections with 'Danger' tape and Red ticketed us which means we aren't allowed to turn the gas back on until our HVAC duct work has been redone to meet code and then inspected.

He wouldn't let us stay in the house...plus we have no hot water or heat.
You can see where the metal is burned on the water heater. 




Shelbie had already left so Spencer and I opened all the windows, turned on all the fans and then left to get dinner.  We weren't allowed to turn on lights, run anything electrical etc.

This is our second evacuation for this reason!  How can they not get this right?  How have we survived all this time?  We all had enough symptoms today, I'm certain if I hadn't have listened to the prompting to call the gas company, we would not have lived through the night.  FYI...we have carbon monoxide alarms that are brand new but they didn't go off.

It's kind of a sobering thought on so many levels.

For the past two days, the dog has been a wreck,whining and crying all day and restless all night.  Monday night, he sat at the foot of my bed barking and whining.  This morning, he wouldn't leave my sight and would run to the front door scratching to get out.  He never, ever scratches at the front door.  When I would grab my purse to leave, he would jump all over me and cling to me.  Now, I get why he was so agitated.

We will be staying in a hotel until this gets sorted out.  Not exactly how I wanted to spend my money but such is life.

It's crazy to think this could have been our last night on earth!  In all seriousness...this could have been the end of our sad tale of existence.  Huh...it's weird to think about it.  I'm pretty sure this is going to haunt my thoughts for weeks to come.  If I am being honest here, there was a part of me that wondered about how great it might be to be done with this mess of a life.  I'm tired.  Tired in so many ways!


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Monday, May 22, 2017

The Bathroom Wall



Sometimes, I wonder what in the world I am doing here.  I'm not entirely sure my purpose, my plan, or what gives my life meaning.

At times, I feel like all we do is exist on a big bathroom wall.  We carve our name into the powder coated metal that is already rusting in the corner of a forgotten gas station in the middle of nowhere on the way to who knows where, and leave our mark...a subtle note that we were somewhere, we existed, and something inside us, urged us along to be seen...right there on the bathroom wall...or on any old wall for that matter.

The more time I have spent with May, the more I realize that we all want to be seen.  We want to be seen beyond our crazy, in spite of our walls and illusions of okay.  On every visit with May over the past 20 years,  we say our goodbyes and she says, 'thank you for remembering me.'  and inside, a little voice of my own whispers, 'thank you for remembering me.'   With every piece of paper she stuffs into her heavy laden car, it's as if she has placed another carving of herself on the bathroom wall...I was here.

Last Fall, on a particularly rough weekend, Spencer and I ran away to Bannack State Park; a ghost town and it changed me in so many ways.  Who was that last person left to lock up a town and walk away?  Did they carve their name on the wall to mark their existence?

As we walked through the buildings, some visitors had left their name.  I find the names of strangers so intriguing.  I catch myself wondering what they were like, why they were there.  As I read the walls that afternoon, I came across two that I couldn't shake from my mind...'David McC' and 'Cliff McC' from Radford College.  June 2, 1978.

Image result for when my soul was in the lost and foundIt's been months now and I still think about these two men often.  Two total and complete strangers who crossed my path decades ago.  For some reason...I do this...I can't not, find out about them.  So, I did.  I've been looking for these men since that day and I found 'Cliff McC'.  I found him in the folds of Facebook.  After waffling about what to do, I sent him a picture of his name he wrote so long ago with a note that said, "I found you."

He was happy to be found and part of me wonders if he's ever been lost.







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Saturday, May 20, 2017

Dreams for Sale

What does a dream go for these days?  I suppose it depends on the dream.

It's never easy to sell out; trade in a dream for a different model...

Today, I found myself wading through dreams...some more profound than others.  Some were sold and some are incubating til the time is right.


I love that I got to step away from the computer and sit and watch Sam showcase just a smattering of his Parkour skills at the Gymnastics Center.  Today was the equivalent of a recital for the gymnastics world. Sam works hard and his little struggling heart works harder and his lungs burn and his muscles ache but that's the price of a dream these days,  for Sam at least.

                 


Spencer sold his dream last night.  His van is gone.  The beloved  1985 Vanagon, the one that we all got attached to.  The one that was suppose to carry him out of this world and into one where he could explore and live and expand.  The time isn't right for that dream.  He found that he couldn't gather the resources to outfit it the way he wanted to.  The way he needed to for his dream.  Not all was lost.  He made over $4000 profit on the sale and another young man, with the very same dream will give it a shot.

And Shelbie...She's still dreaming.  Searching for that one thing that fills all the voids and seals the cracks of sorrow with gold.   Tonight, she is with her friends in Utah at the Lantern Festival and I think, when she lights that lantern and sets it free, a little bit of her heart will go along for the ride.


Just a thought:
                         "When a flower doesn't bloom we fix the environment in which it was planted,                      we don't try to fix the flower." Alexander Den Heijer

So often, we try to fix people when maybe it's not the person that needs fixing... So often, we try to fix ourselves into something different but maybe it isn't us that needs fixin'.  Have you ever wondered about that?
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Friday, May 19, 2017

Medical updates

Some of the boys' immunology tests are starting to roll in. It's times like this when I try to decide how much I love the 'MYChart' concept.  You see the results long before you ever get to talk to the doctor about the findings.  It can be a mental challenge more than anything.

Immunology testing is hard to interpret!  There is not one familiar term and it's not like they are measuring white cells- at least the neutrophils or granulocytes I know all about.  It's complex.  So, I can't say for sure how things are looking.  I could easily tell that Sam has not held titers to any of his immunizations and that is not a good thing...I know that.  Spencer seems to be looking in better shape than Sam.  I was actually hoping his immune system would hold some key as to why he can't eat anything without getting sick immediately afterwards.  Maybe it does and we'll just have to wait.

I have blown it this week in any follow up appointments.  I was suppose to get Sam in to our Cardiologist because things have gotten worse in that department.  I really don't want to take him back to our Genetic Cardiologist because he couldn't explain the heart issues last time and was pretty perplexed.  I did appreciate his honesty but it wasn't helpful.  I think he needs to see a cardiologist who specializes in the electrical outputs like Spencer sees but I don't love Spencer's Electrocardiologist at all!  He has a horrible bedside manner and sees to be annoyed with questions but, it seems weird to have all my kids with a different cardiologist.  I'm so conflicted about what to do, so I have done nothing!

I also didn't get Sam scheduled for allergy testing so we can start the prophylactic antibiotic.  Sam doesn't deal with his health issues very well because of his processing issues.  I was hoping things might calm down a little bit for him before we undertake new testing, especially on his heart.  He has a job he absolutely loves and to hear that he can't do that because of the stress it creates on his heart would be devastating to him right now.  With that said, in my own heart, I know he shouldn't be doing what he does but at what point do you just let them live as normally as possible and pray for the best?

It's a tough place to be and I don't have the answer quite yet.

Shelbie continues to struggle with her bulging disk.  She had a couple of good days but the pain still plagues her.  She doesn't complain though, she's a trooper.  She has a new boyfriend and he seems alright by her definition.  He seems to be respectful and that's a bonus! Boyfriends create this angst for her...at what point does she tell him about the health issues?  Again, a tough place to be.  Not that this is going to end in marriage but he asked her how many kids she wanted.  He wants 6! Conversations like that are a strained reminder that life is different for her.  As much as she wants to be normal, she isn't. The more he probes to get to know her, the more difficult life gets.

As far as Shelbie's testing goes, again, it's hard to say for sure but in my inexperience and study of Catecholamines, it seems that her testing came back low.  I'm not sure what low means other than depression, anxiety and other issues like that but high is what we definitely didn't want.  High  Catecholamines are responsible for brain tumors, which Shelbie has but not caused by Catecholamines it doesn't seem.

I may be changing my whole tune after I talk to the doctor because I may be wrong on all accounts but this is where we stand.

I feel neutral about all this right now.  I am still sufficiently worried but it's not disrupting my day.  I know the doctors are doing all they can right now...I do need to get over my denial and get Sam into the heart doctor...not going to lie, heart issues scare me and a 19 year old with a pace maker scares me even more.


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Tuesday, May 16, 2017

Mothers day 2017

 For the first time in...oh...I don't know...a million years at least, Mother's Day was tolerable!

Why?

Because it was Sam's birthday and I got to spend the day doing what I love, taking care of the people I love.  I mentioned some things from our rough week, there were other things I'm not really going to discuss at length but it put a whole damper on his birthday weekend.  I tried really hard to make it fun but there was a definite current of sadness that showed on Sam's face.

I don't usually go to church on Mother's Day but I had to play the organ which still brings me a great deal of anxiety but right after, I left.  I picked up Shelbie and we went down to see May and take her some chocolate.  She was in really good spirits this week.  A bit confused but she seemed to have a let a little of her resistance to the situation go this past week.

We hurried home and I finished getting a big dinner made and put the finishing touches on Sam's cake.  I invited their cousins over for dinner and then they all played games for the evening while I cleaned up and called my mom.



So, my mom is great! It was nice to take a minute to write her a little letter and talk to her.  She has taught me some of the most valuable skills in life.  I learned self reliance from her.  I learned how to problem solve, cook, sew and love others. She is wise and soft spoken and has come to my rescue so many times when the kids were little and I was sick for a couple of rough years. I love my mom and miss her!

My kids didn't really say much about Mother's Day all day but at 11:00 Sunday night, they walked me down to the family room with my eyes closed and surprised me with this!!!




This video is probably the greatest gift I've been given.  I love that my kids took the time to do this, it means so much to me.  I was speechless, just like I am now.  Mother's day has always been hard for me.  It was the day, some 12 years ago that I felt like the biggest failure in life as I faced a divorce.  Somehow, these kids make everything alright.
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Sunday, May 14, 2017

19 Years and Counting

Today is Sam's birthday!  19 years old!

19th Birthday
Last night, we went to his favorite restaurant Buffalo Wild Wings for a little birthday dinner and then came home to open his presents and have all his cousins over for S'mores and games.


I love these kids.  They are technically not my niece and nephew, they are my Wasband's but they still call me Aunt Kath and they come over a lot.  I love that they are all here in town going to school and that they get together often to hang out. I'm glad I didn't have to divorce them too!  I love them and I love their parents!  There's always a lot of laughter and fun when they come over.  So, Sam had a fun night in pre-birthday celebrations.

Sam has had a really tough week!  His heart is struggling and the doctor is concerned that he may need a pacemaker.  His heart rate is lower than ever and at our appointments this week in Utah, the doctor couldn't get a steady beat, lots of extra beats going on.  His blood work is also not looking good in terms of immune issues and the doctor is fairly certain that Sam will be starting Plasma transfusions soon.  He is running a few more tests but the preliminary results are not favorable.  If the insurance company didn't need more tests to justify the treatment, he would have started this week.

  In the mean time, while we wait for everything to roll in, he is starting some daily antibiotics but...there is only one that they dare try with his heart and liver situation but the problem is Sam has a history of allergic reactions to this one med.  So...I have to get him to the Allergist this week and retest him for Sulfa to see if he's outgrown the allergy so we can start it.  Sam continues to struggle with viruses and bacterial infections and his white count is so low! As much as it kills me to see him get to this point, I know it will improve his quality of life.

We also have to get back to the Cardiologist since his heart has suffered a decline in the past year.

So, needless to say, I'm glad I have these kids around to help me buoy him up.  He's a little depressed this week.

But!! What a trooper!  I love him so much.  He has handled school like a champ.  It hasn't been easy but he has pulled through.  He started his new job this week as they prepare for opening day at the trampoline park.

What I love about Sam is his ability to work with his deficiencies and find a way around them.  He reminds me of a mountain stream.  He is gentle and carries a feeling of calm and peace with him, yet he's mighty to forge new paths when something gets in his way.  He always sees a way to get around any obstacle.  I suppose that's why he's so good at Parkour!

I love the way he pretends to be annoyed by me but he's a softie at heart.  I love his sense of humor and I love that he lets me tag along with him when he goes long boarding! He is thoughtful and caring and listens well to help others...especially the girls!  They all rely on Sam for advice with parents, boyfriends, friends, jobs...Sam is always the one they turn to because he makes everyone feel important and special.

I am so proud of Sam.  I'm proud that he continues to be worthy of missionary service even though that probably isn't officially going to be an available option for him because of these health issues.  I know that he worries about what people think of him but I don't care.  I know his heart and it is golden!!

Here's to many more amazing years to watch this young man continue to Become.

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Wednesday, May 10, 2017

I think we're going to be okay

Maybe I've always felt this way but maybe not, I don't remember.

I realized today, that it's May 10th.  The day I got married for time and eternity a would be, 26 years ago!  26 years!   This coming Sunday is the day my Wasband called it quits and 21 days later, a judge agreed and 12 years from then, here we are.  Still stumbling along but still here nonetheless.

Of course, I still have plenty of thoughts left about these days I mark with a number and a feeling.  Plenty of regret.  Plenty of wondering what our family would be like if things had of worked out.  Plenty of wondering what I would be like.  Different.  We would be different for sure.  Better?  Who can say but for sure, different.

Last night, I had a thought, the kind with a little decidedness behind it, that we are going to be okay.  We might just make it.  It was strange to me, that this is the feeling that surfaced without coaxing, without convincing, just bobbed it's way to the surface of the churning thoughts I often drowned in. It felt good to try that idea on.  Yes, I think we might be okay. After all these years and wondering if I would ever get through this to something more hopeful...it came, however fleeting it was, I felt it.

Our FIRST picture as a family of FOUR.  They were so little. It's a horrible
picture,because I had a random 7 year old who was playing at the park take it
but really,
It's a sweet irony to me.  We always make do with whatever resources
we have. 
I wish that meant it was going to be easy now but these young adult years are hard on me for so many reasons.  Looking back, I feel like I've been running in a series of back to back triathlons and I am exhausted and in some ways, I feel like the next heat is starting again...and that has a certain tone of dread with it but I'm going to hold on to that clarifying moment that I think we are going to be okay.

Certainly, I couldn't do it without some great kids who are teaching me, forgiving me and offer up a team I can't refuse, to play out the rest of this game with.  What's really ironic...the day I was called by my attorney to tell me the Judge had signed the papers, I was sitting in the PICU at St. Lukes Hospital in Boise, all alone with my three sedated kids and it was the saddest moment I will never forget and here we are again, alone in another hospital, awaiting tests that will be sent to one specific location on this continent, thousands of miles away and here I sit again...alone with these thoughts and these amazing kids that are still here!  And I'm still here!  And, I think we're going to be okay.

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Tuesday, May 9, 2017

Life

It goes on...Life that is.

I need to get back to my daily writing.  It's much easier to journal when it's done daily...hard to believe but it's true.

Anyhow...Had a bit of a surprising weekend.  Shelbie ended up in the ER Saturday evening.  She had mentioned earlier in the day that her leg and back were bothering her but other than taking note, I went on with my day and so did she.  By 9 that night, she was pretty miserable and asked to go to the Urgent Care.  I was pretty concerned that what she was feeling was nerve pain and wondered if those large lymph nodes or the granulomas in her abdomen were getting larger and putting pressure on some nerves so I opted for the ER.

The past 6 months, it's been a crap shoot going to our ER.  For over year, they had awesome docs staffed and it didn't matter who we ended up with, they were kind, compassionate and competent.  Now, not so much.  There are two docs we always seem stuck with and they are not that great so I was really hesitant about going anywhere.

We lucked out and got a good doc.  We hung out for 6 hours until after a few tests, its was determined that she has a pretty bad bulging disk in her lower back and it was putting pressure on the nerve channel and that was causing her pain. I was relieved it wasn't the lymph nodes growing.  In fact, they saw those and they were stable from last year so that's good! I'm mean, it's not good she has a disk problem now but still...She has been in so much pain but it seems the meds are starting to work a bit better today so it seems more manageable.

Sam learned some life lessons this week.  His boss isn't happy that he got a job at the trampoline park.  It kind of upset Sam and we spent a long night discussing the situation.  It will be fine and he's learning a lot about how to handle difficult people.  On a funny note...he has two roommates from Albania and they suggested they have a nice apartment lunch on Sunday.  They said they would be in charge.  So...they ordered a food box from Gobble.com.  Ha ha...Salmon and Chicken and some other fancy food.  Once it arrived, they weren't exactly sure what to do to prepare it so Sam took over.  I'm not sure he really knew what he was doing...I mean, the boy who thrives on a 100 ways to make Ramen.  I guess it turned out great.

Spencer is doing alright.  His arm still isn't healing very well but he is out of the soft cast.  Tomorrow, he has a minor procedure on his thumb and that's unrelated to the arm issue so he may be out of commission a little longer.  He was so sweet on Saturday night.  I got Shelbie home from the ER close to 3 am.  He waited up and had the dishes done, and turned down the covers on my bed!  Isn't that the sweetest thing?   Sometimes, it's just the little things that keep you going.

In other news...I saw May again on Saturday.  I just see her slowing down before my eyes.  The first week she still had so much energy and now, she looks worn out and exhausted and seems like she is giving up the fight. I took her a bag of things I thought she might like but they confiscated everything but the bag of Milky Way and new reading glasses.  That made her really angry.  I called her tonight and she said she hasn't been feeling well yesterday and today.  I wish I knew how to better help her.

So...life.  It's interesting....and it goes on.




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Saturday, May 6, 2017

Weekend Update

This has been a memorable week!

Tuesday we had a little neighborhood action.  Strangely enough, I was home from work early and I noticed Police officers milling around but that happens every now and again so I didn't think much of it but then I noticed a couple of people wandering around, then a few more so I went out to see what was going on.  A 10 year old girl was missing.   As I got closer to the police officers and the father of the girl, I realized that I knew the father but didn't realize he had moved in down the street two weeks ago.

I talked to him briefly and then followed them back to the main road where more police officers were gathering.  Me, along with a few other neighbors stood back as the police gathered around one of their cars and talking on the radio.  More people gathered and more chaos started to ensue with all the extra bodies standing around so I approached the officers and suggested that perhaps they could tell us all how to help.  I also asked if anything had been posted on Social Media to which they responded, "No.  Can you do that for us?"

"Okay.  Tell me what to write."  They were talking fast and I was typing as quickly as I could on Facebook.  It was still so early, they had no pictures of the girl.  By the time the police were called, the girl had been gone just over an hour.

It wasn't long before we had tons of people ready to search and more Emergency Services arrived, an ambulance, the crime scene truck, a fire truck...it was all hands on deck and very impressive. The police were organized and gave assignments to everyone there. We all spread out going door to door, showing her picture and asking everyone to watch for her.  Shelbie and I were given a street to canvas that was two blocks from our house.  The very first people we spoke to had seen her walking towards the highway.  I ran as fast as I could back to the command center to give them word.  They immediately dispatched police to the outskirts of town.  By now, we were over an hour into things.

Long story short...she was found just before 10 pm several miles away, in the country.   This poor family has had a very difficult year with an ugly, public divorce among other things.  I felt pretty bad for this poor single dad.  Just before people started gathering, I asked him if there was anything I could do for him.  His eyes filled up with tears and I gave him a hug and said, "We are going to find her.  I know we will.  Just keep the faith."   It was a jarring night and by the time I got to bed, I was emotionally spent.

Wednesday, we attended the funeral of our friend's son.  It was a beautiful service for a beautiful spirit.  We fell into line for the procession out to the Interment.  Two years ago, we attended the father's funeral so when the hearse turned away from the direction of the cemetery, I became confused as to why the boy wouldn't be buried beside his dad but we were along for the ride.  We came upon a cemetery but it was clearly not the right one.  The Funeral home circled back around and after a long detour, we arrived at the right cemetery.  I felt like we were being punked.  As the family sat down, the undertaker came up and apologized that he had been on the phone and wasn't paying attention to where he was going!  Ha ha...Props to the guy for admitting that.  I have never in my life had a funeral director go to the wrong cemetery.

Afterwards, we stopped at a hole in the wall place for a late lunch.  We were in the smallest town possible and we like to make a habit of trying out places off the beaten path and this certainly was!  It's a bar in the back of an old gas station.  The gas pumps are the old fashioned kind and it brings back so many memories!   The place was packed with farmers.  We got the last table available.  Just as I suspected, the food was pretty darn good.  The biggest surprise came when the waitress came to tell us that there was no bill for our food, a man who had been sitting at a far table had covered our bill!!  I couldn't believe it!  I asked her if she knew the man and she said she had never seen him before.  I don't know if that's true but what a great thing!  I was very appreciative.

                                

Spencer and I made it to the temple this week and that was a nice change.

The rest of this week has just been busy with work.  When I wasn't working, I've been decluttering.  I seem to do this every other month so it's a wonder I still find junk to toss.  I even got rid of Sam's twin beds that were in his room.  I have decided that it's time he got a 'big boy' bed!  Seriously, he's been a good sport to sleep on a tiny bed for so long.  When I wasn't working and decluttering, I was getting things coordinated and ready for our medical stuff this week.  I think we are ready.  It takes a lot of work to get all the necessary papers and orders from Duke to our Hematologist and Consent forms filled out for the studies we will be doing at Harvard.

Shelbie has been having more episodes when she stops breathing.  It's getting a little unnerving because I don't hear her when it happens at night.  She can't yell or scream for me because she can't breathe.  She tries to run for me but collapses from lack of oxygen.  I started looking into what it would take to train a dog to sleep with her and alert me when she has problems at night.  A friend suggested I try a baby monitor but I'm afraid I wouldn't hear that either.

I have a good lead.  I asked my doctor about it and he just happens to train dogs on the side and he got me in touch with a lady in Salt Lake who trains medical service dogs.  I am hoping to meet with her this week on our trip down!  I don't know if I could afford a service dog, I know they can be a fortune.  I just need a dog to bark or come to alert me when Shelbie goes down. That's all.  I watched a Standard Poodle being trained at Huntsman on our last extended stay there.  She was being trained twice a day just outside Shelbie's room so it was fun to watch that process.  We'll see...

So...lots going on here.  This coming week is going to be a big one.  There's a huge chance I'm going to lose my two office cleaning jobs on Monday!  What a circus that has been and now...I may lose them to someone who undercut my bid by $500 a month.  We'll see.  I hope I don't lose them but if I do, I'll figure something else out.

There's also a good chance that Spencer will need to start plasma transfusions just like Shelbie.  Part of our visit will be to determine that.  With everything going on politically with the healthcare debacle, losing work and the possibility of starting another $13,000 a month treatment...well, let's just say I'm trying not to worry.

Whew...Life is happening fast!



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Sunday, April 30, 2017

Through the trees

It's been a week of deep thinking, new challenges, a few good things and some not good things.

Friday was another milestone of birthdays for me.   I really didn't want to celebrate or even acknowledge my birthday.  Birthdays have become a reminder that another year has come and gone and I have nothing to show for any progress I've made in life.  Still trying to find the forest as I make my way through all these trees!  Most days, I still feel like I'm 10  years old and wonder why in the world I've been left with so much responsibility.  Other days, I feel like I'm 80 years old and wonder why in the world I've been left with so much responsibility...I'm too old to be working the way I do!

At any rate...it was just another day.  Well, not exactly.  We got word late on Thursday night that our 'Santa' Mike who passed away two years ago, had a son who was expected to pass on Friday.  He was their only son and was born with Downs Syndrome.  I remember how Mike would take such tender care of his son.  Mikey had to have surgery to remove some necrotic tissue but in the process became septic.  Mid week, the doctors let the family know that there was nothing more they could do so they gathered on Friday to say goodbye.

All day, I was emotional at the thought of this sweet family saying another hard goodbye but at the same time, I felt so much clarity about death and Heaven.  I could see so clearly Mike being in that hospital room with his family, comforting them and ready to receive Mikey back to Heaven.  In my mind, I saw spirits of love mingled with all the love on this side of Heaven.  I saw that young man surrounded with loving care.  I imagined how his mom must feel to be passing their son off to her husband who has been watching over them on the other side of Heaven.  It was a sweet thought, but hard to say the least.  Shelbie was going to go down to the hospital to capture their goodbyes in photographs but they decided to have her at the funeral instead, later this week.

I spent a few hours with May at the mental hospital again on Saturday.  It was a hard visit.  She is really not happy there and she doesn't understand why she was committed.  To her, Schizophrenia is her way of life, she doesn't even see herself as sick.  Living in her car makes her happy.  She doesn't understand why they won't leave her alone and let her live her life.  She was also upset with me that I didn't get very far in breaking her out of there.  That broke my heart but she has renewed hope in my efforts this week.   She thinks I work at the hospital  now and that frustrated her that I hadn't come to sneak her the master key to unlock the locked doors so she could sneak out.

May is such a sweet and tender spirit.  It's extremely hard to believe that at 86 years old, you could be arrested and committed.  Most 86 year olds I know, are settled nicely into an assisted living home, not walking laps at a mental institution. She has walked 28 miles!!  Down two short corridors.  For every 10 miles, they give her a reward.  This week, she got a stress ball and 5 phony dollars to 'spend' at the Canteen but became upset when she had to pay $1.50 for one bite size of a Milky Way bar.  When she reaches 35 miles, she gets a pair of sunglasses.  In her mind, the people who get to 35 miles seemed to go home right after getting their sunglasses so she thinks that's the whole point to being there- just get the 35 miles, collect your sunglasses and voila!...you get to go home. She doesn't realize that those people who made their 35 miles were just shuffling along for months!!! Not two weeks!  The dilemma is, she has no home and now she has no car and they have taken away her drivers license.  Just imagine that frustration and pain to feel like your entire world has been taken away and you have no idea what you did wrong?

I left with a promise to return with Milky Way bars and a pair of reading glasses and some brochures for assisted living places.  She plans to reach the 35 mile mark by Monday (tomorrow) so that she can get her sunglasses and leave.  The cellulitis in her leg was much worse on Saturday and she had a flare in her Scabies.

It's hard with each passing week of difficulty to see beyond all these trees!  It's so easy to get lost and turned around and strain to see the big picture.  I had a bit of a wake up call on Thursday night and into Friday morning with the kids.  They all have their struggles in trying to balance their health, or lack thereof with what they can do in life.  It's so hard for them when they literally can't travel the usual and expected path in life.  I haven't had time to be as present in helping them and lets be honest, I'm dealing with my own demons of undetermined expectations of life and just getting through the day is about all I can handle.  The wake up call came at about 11:30 pm when we were all arguing and Shelbie said, "How can you sit there and preach to us about how much God loves us and how we need to have hope yet you have lost your faith too!  You are the one I hold on to.  You are always strong and happy and I know if you have faith then I can have faith too because I trust you and I need you to be strong for me!  For us but I don't even know you anymore!"

Whoa...I was quick to clarify that I have not lost my faith.  Not even a bit of it.  There is a big difference between losing your faith and being completely exhausted and lost.  I don't understand why we struggle when others are blessed to find a swift end to their struggling.  I don't really understand the whys of it all but I'm willing to hang in there until I find those answers.

Wow!  A long post I didn't plan on. At any rate, we continue to wend our way through this forest of trees even if it means circling back a million times on a lost trail.

Ohhh...but in good news, Sam was hired to be an instructor and coach at the new trampoline gym coming to town next month.  He is so happy!  I haven't seen Sam so incredibly happy in such a long time!!  He started contacting the owners over a month ago and kept calling every week until they interviewed him Thursday.   He will primarily be over the Ninja Warrior course and the head Parkour Coach as well.  I'm really proud of him.  It's so nice to see him full of energy at this new adventure.

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