Thursday, December 13, 2018

What's New?

Christmas is coming up fast!  As a family, we are enjoying our little efforts to 'Light The World'!

It makes all the difference in the day, when we can engage in even the smallest kindness.  Kindness is such a powerful act of survival.  We don't realize just how much it can shift the day.

This week has been a bit crazy.  I decided to quit cleaning houses.  It was such a hard decision to make.  I have spent a lot of time worrying about what to do.  I had applied at a company in a nearby town, about a month ago to do 3D drawings and animations.  I really didn't think anything would come of it but after a lengthy interview and a test project, I was offered the position and I accepted it.  I tried a hundred different ways to hold on to my clients that I clean for but I knew in my heart, I had to let it go.  It's been a 12 year career, and though it was hard, I worked for very nice people who have been extremely kind and patient with me, especially this past year as my life has been going sideways and I had to cancel a lot, so I could take care of my kids.  I will miss those people each week.

Shelbie has been in rugged shape this week.  She's been fighting a cold for about three weeks but seemed to be improving a great deal, in fact, I would say she had kicked it.  Tuesday night, she was running a fever and broke out in petechiae.  I was worried that her platelets were dropping again so I ran her in to the Urgent Care before they closed for the night.  She has no physical signs of an infection but her white count was triple what it normally is for her, so that was concerning.  They started an antibiotic just to be safe, since clearly, something is brewing. 

From Tuesday night, until Wednesday night, Shelbie slept 18 hours straight!!!  She was up for just a couple of hours, before going back to bed and slept again until this morning at noon.  Today, she's been stumbling around, mixing up her words and feeling nauseous but still, no real signs of infection except for a fever that waxes and wanes but never above 100.  Her blood pressure, on the other hand is out of control.  It's been hanging around the 96/ 64 which is extremely low!  When she has seizures, she ends up sleeping for extended periods of time but I haven't noticed that they affect her blood pressure.  It's hard to say what is happening.  She is really not doing well.  Next week, we are back in Salt Lake for Pulmonology which is probably going to be a waste of time but maybe having another set of eyes on her won't be so bad.

Life is moving fast as usual around here but I'm trying to keep a Christmassy perspective and savor in the beauty of this season.


Saturday, December 8, 2018

The Best Gifts

I love this time of year.  I love walking through a mall and seeing all the people hustling along with their gift giving list in tow.  I know that one could argue in the worldliness of it all, but I like to think that their hearts are full as they thoughtfully consider the one they love. 

I reflect on my own love of giving gifts.  I really can't wait to watch my kids opening a gift I've spent half the year hiding. 

Photo: LDS.org
On my way home from the mall, with carols playing on the radio, I considered for a moment on the Wise Men, and precious gifts they offered baby Jesus. These weren't just men in the town of Bethlehem who thought to drop a little gift by the new baby down the street.  These were men of important reputation.  These were men from far away places who brought gifts of great significance; gifts that symbolized what they knew about this child, born into a poor and lowly family.  They had yet to witness of the width and breadth of Christ's short life on the earth but they journeyed for months to minister to this family.  Regardless of the circumstances of his birth, he was thought of as royalty.


Gold, Frankincense and  Myrrh were the gifts given.  Not only were they of great worth from a worldly view but spiritually as well.  The gold, symbolizing his precious, everlasting purpose as a Savior of the world.  Frankincense to symbolize his healing mission as he ministered to everyone he met and Myrrh.  Myrrh is my favorite gift to learn about.  It was used, in the day, to embalm the dead but not only that, it was a healing oil.  To me, Christ's death allows us all to experience an eternal healing from the battle scars of mortality.


So, what about the Shepherds?  They didn't come with gifts of worldly worth.  They had nothing to offer and in fact, Shepherds at the time, were thought of as dirty, often shunned people yet they were the first to be privileged to see and hear the Angel announcing the birth of Christ. They went right away.  They obeyed.  They witnessed the miracle of birth; the Savior of the World.
Art: Carl Bloch


And then the Angels...they never left the side of the Mary and Joseph.  They stood by faithfully, they led the way and they accompanied Christ in the most difficult of circumstances as he grew and suffered in his final days of preparing the greatest gift we could receive.

What are we to learn from the Advent of Christ?  Christ is a Savior to all; the wealthy, the poor, the sinner and the saint.  His birth was a gathering of all.  As we minister to those around us and light their world, are we gathering all, as Christ did?  We all have a place in lifting the burdens of others.  We can bring the gifts, the worldly things that matter; a meal, a tank of gas, warm clothes, priceless treasures even.  We can be like the Shepherds and arrive quickly and witness and revere the struggles and trials of those we minister to.  We can be a listening ear, stay near and offer blessings and balms of spiritual healing.  We can be an angel and lead others to those in need, stay close always. 

Whatever gifts we choose for the ones we love and the ones we are led to serve, give them the best gift...the gift of you.  Whatever you offer it matters not, just show up, be a light. When service is done in love, it will always be the Best. Gift. Ever. 

Wednesday, December 5, 2018

Never Worry Alone

There are lots of ideas floating about that involve donating to food banks, being a secret Santa, sending cookies to the neighbors, shoveling snow from the widow's driveway, but very few ideas about the emotional labor we can do for one another; the things that cookies and casseroles won't exactly fix...though those can be a welcomed respite.

We all know someone struggling with one thing or another.  We all see their problems that seem to have no earthly answers but have no clue, the fear they tend to.  What then?  How do we light their world at this time of year that can be so difficult despite the Fa-la-la-ing around us?

For today's idea...Never let someone worry alone.  I heard this idea from a highly esteemed Neurosurgeon. One of the hardest things to do is worry alone.  Those worrisome thoughts roll around in our anxious minds with a weight that can be paralyzing.  The fastest way to fix a load of care begins with a thoughtful ear.   You won't have to look far to find someone who needs to share their burdensome thoughts, someone who has no one else to shoulder the worries of life.

Image: Simon Dewey
 This thought occurred to me a few weeks ago as I sat in church.  We were asked to introduce ourselves to the people sitting beside us.  I sat beside a woman who's husband had recently had a massive stroke.  His once energetic body had become nothing more than a shell.   She herself was not a specimen of health though she was the sole caregiver for her husband now.  She was weary and worn.  I saw so much of myself in her.  As she poured out her worries that were far from an introduction, I felt the intensity of her emotional laboring she did.  I made a point to visit with her afterwards and she was more than willing to share her worries.  When all her tired thoughts had tumbled out, she had a tiny light in her eyes once again.

I know that those few moments didn't change her world, but for those few moments, she didn't have to worry alone.  We exchanged ideas of how to cope in chronic situations.   We shared a light and a love even though our situations have no resemblance to one another.

So, this week, slow down the frantic pace of Christmas prep and stop to share a worry with a sweet soul in need.


Monday, December 3, 2018

Ordinary Power

We've all been asked the question: If we could have any super power, what would we choose?

So, what would you choose? 

Would you be more powerful than a locomotive, faster than the speed of light, able to leap high buildings in a single bound?

Not once have I ever heard anyone say their super power would be just some ordinary thing that we are all capable of.   That would be silly, ordinary power is just so...ordinary.  We all secretly wish to be more than just plain, old, boring, ordinary. We long to find some great passion and purpose to define our days in this life; some legacy we leave to the world.

With the first of December, our church launched their annual, Light the World campaign.  It's a month of sharing our light, daily, with those around us through acts of love and service.  The world will not be saved by great people doing powerful things but by the ordinary, humble, human spirit of light and love we intentionally share. 

One of my favorite songs is Brightly Beams Our Father's Mercy.

 

Phillip Bliss wrote this popular song when he heard the story of a ship trying to get into the Cleveland Harbor on a stormy night.  The Lighthouse shone bright and could be seen, but the lower lights had gone out.  The lower lights guide the ship into the safety of the harbor.  Without those lower lights, a ship has little chance of getting safely to the shore.  The tragic ending, is that the ship missed the entrance of the harbor and smashed into the rocks.  Everyone had lost their life that night. 

The Lighthouse is a super bright light that is seen for miles, the lower lights are much dimmer but of equal importance...an ordinary light, you might say. 

Christ is our Lighthouse, but we are the lower lights.  We are the light that cares for others being tossed in the storms of life.  We are the ones, through our acts of love, who rescue and save those around us.  There is power in one...one person, one deed, one act, one love, one little light.

For this month, be ordinary.  Do the things we do best in our little ordinary corner of the world, serve and love those around us.  There is great power in a shared hope, a borrowed faith, an ordinary light that changes the world in powerful and amazing ways.

Sunday, December 2, 2018

Hope

Where is the time going?  In my effort to simplify my life, it's become a whole lot more difficult. 

Just when I think everything is working out, a wrench appears from nowhere and it all changes again.  I'm learning that hope isn't something you master in a day but every day is a new opportunity to hope. 

I love December.  It feels like an unwinding of a world that has been wrapped up so tightly in worldly matters.  We all seem to take a collective exhale and slow down to, at least in moments, help shed a little love and light upon the those around us we deem to be less fortunate than ourselves.  It's almost like a rebirth of hope that humanity will actually pull through.

This week, my hope was dashed on several occasions.  Health insurance continues to be the thorn in my side it was designed to be.  Work is full of problems but the biggest blow of all came with a call from Huntsman.  We've been waiting to get Shelbie's PET scan done and every other day, I've called to remind them the appointment still hadn't been scheduled.  They finally responded on Friday by saying the head of the Radiology Department, some doctor we have never seen or heard of,  denied the request for Shelbie's scan.  He claims that she had one last year and it is not necessary to do another one.  I immediately contacted our team, via email with a very frustrated, somewhat Mother Bear of an email. 

The back story is, that when we met with our Neurologist in early November, she gave us a 10 page scholarly article on the prognosis of CVID and the progression of the disease.  The article clearly states that once the granuloma tumors have left the confines of the lungs, treatment needs to be more aggressive in the form of chemotherapy.  Shelbie has tumors in her abdomen, and her brain.  I asked in my email how they can educate me on the precarious position Shelbie is in and then they sit around humming and hawing about when and if to start treatment and then...some random doctor who has never been involved in our case gets to pull rank and determine the course of treatment...or lack thereof. 

So, all of this, and some low moments this weekend, left me wondering  what to do with hope.  What do you do when hope seems like a waste of time and no match for the way those around us can screw up the plan?  Hope is this intense belief that everything is working out.  When it appears that this isn't the case, there goes hope.  Life everything else in life, I am learning, as I pause to ponder on such things, that maybe there's more to hope than I thought.  Maybe hope can be nothing more than a 'hope' that everything will make sense. 

I love how a small shift, a pivot in our perspective can take an overwhelming angst and make it manageable. 

I don't know how this is going to end for Shelbie but I hope that as we move along on the path of everything going wrong, we will at least see how it comes together to make sense.  I hope that a deeper understanding prevails, in the end.  At least I hope.


Tuesday, November 20, 2018

The Thing About Faith

I've been trying to take some time to reassess my life, make some new goals, decide what 2019 is going to look like, you know, making the assumption that I have a say in the matter.    There have been some big changes in me as I've sat to ponder on these things, send out some love to the Universe. 

In wading through these big thoughts I stumbled into my faith crisis. 

It's probably not what you're thinking.  I'm not losing my faith.  I'm not questioning all the whys and hows of life but I am questioning the lessons I've been taught about faith. 

From an early age, prayer and faith and are kind of lumped into the same lesson.  At age 6, you lose your favorite toy and  your dutiful, Christ centered mom says, "Well, did you pray about it and ask Heavenly Father to help you find it?"

Huh?  Well, no...

But you try it out with the help of your mom and when you're through, you open your eyes and there is the toy.  Like magic from some distant land of God, it appears.  "That's Faith!"  you're told.  So, it becomes a pattern.  Like all the important things in life, a pattern evolves and with each challenge and trial, we navigate it with our new found tool of faith and prayer.  Time and again, it works. 

As we get older and the problems a little bigger, the process takes time but don't worry...now they teach you about God's time and how he really doesn't track time the way we do so in HIS time, the answer will come.  You stumble along the so called Heavenly time frame and more often than not, the answer arrives in the nick of time, because remember, God is an 11th hour God...not a God on the first watch.

So many rules when it comes to God and Faith...and the rules we thought were unchanging at age 6 just got all switched up into something more complicated and hard.  Faith is hard!

Now I'm in my 5th decade of life and the concept of Faith required of me now,  has little resemblance to my 6 year old faith.  I mean...that makes sense...I've grown, I've seen some things...hard things.  I'm done looking for my lost toys.  Where do you go with your faith when the magic of it all disappears and waiting on the Lord means you never get the answer?  What is the next faith level?

These questions fill my thoughts nearly every hour of every day.  For months now, Heaven has been an absentee friend as I search and pray and ponder and wrestle and plead and cry and weep and wail and gnash my teeth and shake my head and even fall apart in humility.  I pray more, read more scriptures, do more good and still, the answers aren't there.  Is it me?  Is it HIM?

I think I'm realizing it's me.  With every stage of life, a new version of ourselves is required and so it is with faith.  Faith really isn't magic.  It's not a reward because we prayed.  Things don't always work out, people remain sick, it rains on our parade, frogs remain frogs no matter how sweet the kiss.   The faith I am learning to have now is faith in the character of God, his heart, his mind, his kingdom and that is where my trust needs to be.  It's starting to make sense. 

When we are young, faith is an experience; an enjoyment of blessings realized.  Now, I'm learning that faith is a relationship. Whatever God chooses to do, Faith is about remaining with him.  Choosing to stay.

Sunday, November 18, 2018

Pursuits of Happy

This weekend, Spence has been in Oregon shooting a music video for the punk rock band Roseburg.

Spencer has been sick for the better part of 12 weeks...since he was in Mexico.  He came home sick and has been struggling to stay on his feet ever since but, in true Spencer fashion, he refuses to slow down.  Of course, the logical thing to do is take a road trip to the Oregon Coast. 

He and the band arrived at 2 in the morning.  They slept for 3 hours and made their way down to the beach to film as the sun was rising.  Since Spencer has been a young adult, he has developed this fascination for the sunrise.  He loves the morning fog, the way it teases the morning light.  I think there is something in the way the light creeps in and before you know it, and almost all at once, the world floods with light.

I talk to him every day, not because I can't let him go but because I love to witness his life.  I'm so smitten with my kids and fascinated at the way they pursue their happiness.  Sometimes, I think he is like the sunrise...his life can often be hiding in moments that are the darkest, just before dawn. Nothing makes sense and he fumbles along but then all at once the light wins and his pursuits in happy and purpose, throw the shadows as they stand as big as the light.

I stole this picture from his Instagram Story.  I love this.  I love to see him working, pursuing the passions that light up his life.  It might be my favorite picture of him. It's just him on this photo shoot.  There is no team of photographers, videographers, light or sound guys...it's just him.  This is Spencer in his happy place.

 A picture he took of the Oregon beach, just as the sun nudged its way through the morning fog.

 

Saturday, November 17, 2018

Cardiology and Concerts

This week, we had two cardiology appointments, one for Sam and one for Shelbie.

I pretty much had Sam's appointment figured out in my head before we even got there.  The hospital sends me quarterly reports on the boys' pacemaker so I can see some basic information.  I knew Sam was pacing a lot more than when he first got the device.

He is pacing at nearly 70% of the time from the wire that is placed in the upper chamber of his heart, the right atrium.  When he first got it, he was pacing around 40% ...if memory serves me correctly.  The part that surprised me was that the lower chamber, the right ventricle started pacing.  17% of the time, the ventricle is misfiring.   Our doc was a little concerned about this because it will wear out his heart.  He made some adjustments and we are going to see how things go for the next 6 months.  It makes me a little weary thinking that his heart is getting weaker and needs more help from the pacemaker.  I could worry about this but I'm really going to try to put it aside and move on to something else, at least for 6 months.

Shelbie is kind of the same story.  Her heart is okay-ish, at least nothing they can fix.  It's all the other things that are stressing the heart, not the heart itself.  We had an embarrassing visit for Shelbie's appointment.  I should mention, the kids appointments were a day apart from each other.   My physical exhaustion continues but even more so, my head is a mess.   I think that we've been at this for too long and I am plain and simple, worn out.

In the past, I've been like a walking encyclopedia when it came to the kids and their myriad of diagnosis but this week was different.  I was unprepared for the appointments.  I had no questions and nothing to say at either appointment.  I was caught completely off guard when our cardiologist asked me to go over the boys' Dyskeratosis Congenita symptoms...Ahhhhh...I drew a blank.  I had no clue what one single symptom of DC was.  I felt ridiculous.  There was literally nothing in my brain.  I even completely forgot that just 6 weeks ago, Shelbie had the Transesophogeal Echocardiogram.  I forgot about the neurologist we met with in the cardiology appointment.  I forgot we had met with a cardiac surgeon 4 weeks ago.  There was nothing in my head!!  That is a first. 

I could tell our doctor and his nurse and the PA were confused that I was dumbfounded.  They probably thought I was making it all up...at least that is what I felt like.   I couldn't get out of there fast enough.  Even now, that I've had a day to think about it, there are million questions I should have asked about Sam's ventricle issues.  Ugh. I didn't.

I'm worried I'll never get back to my normal self again.  Whatever that is.

At any rate...we salvaged the cardiology pain with a surprise from Shelbie.  She bought us tickets to the Air Supply concert in Salt Lake.  Some weeks ago, we were on the topic of concerts and she was stunned that I had never been to a concert before in my life!  So this was some surprise!  It was so much fun! 
We had a few minutes to get to the hotel and get ready.  She paid for a nice dinner and then we walked to the concert hall.   We stopped at art galleries along the way.  I love art galleries.  There was a special glass display commemorating Veterans Day.  There were art displays of shards of stained glass collected from all the churches that were destroyed across Europe during WWII.  It was beautiful.  Then we stumbled upon a gallery with a temporary display of Carl Bloch.  I love Carl Bloch.   The art galleries alone would have made for a perfect night.



The concert was amazing!  It was so fun.  I was worried that Shelbie wouldn't enjoy it since the group was long before her time and far from the kind of music she enjoys but she loved it too!  I honestly can't remember the last time we felt relaxed.  On our walk home, there was a man playing a guitar and singing.  Some drunk people were dancing around him so we joined in!  Completely opposite of my personality but even that was fun. 

Sunday, November 11, 2018

Snippets

Life's been cruising along...

Shelbie is doing so much better as we wrap up the week.  Last weekend, I attended a Neuro-Immunology conference on 4 of the most rare, neuroimmunology diseases.  I'm talking super rare diseases that our doctor treats and she is one of just a handful of doctors who specialize in immune diseases of the neurological system.  Common Variable Immune Deficiency or CVID, which my kids have was one of the diseases discussed.

When I say discussed, I mean...a 2 minute run down of symptoms and the time it takes to say, "We don't have any good data on this disease."  In a room full of close to 100 people with these rare diseases, only one other person in attendance had CVID and that diagnosis was still up in the air. 

At first I felt like I had wasted my time but the more I considered the day, I realized many things about myself and the way I advocate for my kids and have tried to engage the despair I felt at first, instead of running from it and being angry. 

On a related note, the first line of treatment for CVID is plasma transfusions.  Shelbie and Sam are both dependent on this and will be for the remainder of their life.  This week, I was notified by one of our specialty pharmacies that there is a shortage of plasma and they have to spread out the supply they are able to get, among all their patients, which means, they could only guarantee us two weeks worth.  I have reached out to some people on a few of the support groups I am in and many have received the same message.  I'm not sure the nature of the shortage but I'm really hoping we don't have to go without. 

I have a few big things in the works around here...I've been busy over the past 6 weeks creating.  I've decided to start a wedding/party rental business.  I'll be renting backdrops and table centers.  I've got 4 different backdrops designed and built and three different styles of table centers as well as other props like lighting, Christmas trees, sleighs, lanterns, display boxes, candles, and more!   My goal is to have photos taken this week with a formal launch next weekend!  It's a been a huge undertaking but something I'm really happy with and excited to get started.  I really want to make weddings affordable.  I've helped out with a few weddings this year and it's astounding how expensive a wedding service is.  My theory is that people have more time than money.  So, everything is ready to go.  They will pick it up, put it in place and return it.  I'm hoping to stay out of the equation but we'll see how things go.

I am also done with my health and wellness course and should have my certification done in two weeks.  I'm exploring what to do with this now.  I have my niche of people I want to service and I have a doctor who is willing to help me with referrals as well.  More to come on this as it unfolds.

Finally, I applied for a 3D designing job.  Right about now, I'm sure you are wondering what on earth I am doing my life!  Me too!  Actually, there is a method to my madness but it's still unfolding.  Ultimately, I'm undergoing a remodeling of sorts so, stay tuned.

Saturday, November 3, 2018

Hard week

We had to make a Salt Lake trip on Thursday in order to meet with Shelbie's Neuro-Immunologist. 

Early Thursday morning, Shelbie woke me up just before 4 AM.  She was clammy, sick and laying on the bathroom floor.  She kept saying that something was wrong...clearly, something was wrong but at the time, I didn't make any connections.  She kept saying that she knew she was biting her lip but couldn't wake up or stop the biting.  I still didn't make the connection that she had had a seizure and judging from the past two days, I am guessing she lost consciousness at one point.  When a person loses consciousness from a seizure, they sleep for a few days afterwards because of the toll it takes on the brain.

I got her back into my bed and she fell asleep.  We were trying to leave for Salt Lake and I could hardly get her awake or to stay awake.  It was really odd.  Yesterday, we were at the hospital bright and early and she was really struggling to stay awake, still and her blood pressure was 92/48.  They were a little alarmed so they ran her through some orthostatic blood pressure testing and it stayed pretty low. It was one of these rare moments when the doctor actually saw what I often talk about...the things that happen to her that scare me.

We were suppose to get the marching orders for chemo today but that didn't happen as planned.  Instead, they want a PET scan of her brain, some additional infusions to try to get her stronger and then we will decide on chemo.  There is no guarantee that it will shrink the tumors and that is the hope, especially since the granuloma tumors have spread from her lungs and are in her abdomen and brain.  As far as we know, her liver and kidneys clear.

The downside is, that the chemo will definitely cripple her immune system and leave her extremely vulnerable to overwhelming infections, in which case, we may not want to do it and live with the growing tumors until we have no choice.  If the granulomas in her brain have grown or spread to more vital areas of the brain, then we will have no choice and they will do chemo. 

I learned something very interesting...CVID often presents with Dyskeratosis Congenita and presents first! In many cases, they are unable to find the gene mutation.  Our doctor was also saying that once they spread to the heart, they often create so many issues with the electrical system of the heart that they end up having to have pacemakers!!  Sam was just diagnosed with CVID earlier this year and what do you know...he has a pacemaker and while we know he has AVM's around his heart, we didn't look for granulomas in his heart.  He has a couple of small granulomas in his lungs. 

Our doctor also reviewed all the systems of the body that CVID affects and one of the common infections for CVID patients is Salmonella and other GI issues.  Spencer has not been diagnosed with CVID yet because his immune system numbers are low but not low enough to make the call, so we've been watching him but he has all the symptoms of the disease minus the granulomas...but he's never been scanned for them.

So, it's been a tough week.  Shelbie is still not well.  They are worried she is just having so many deep tissue seizures and her brain and body is struggling to recover from them.  It's been a little scary.  They did double her epilepsy medication dosing and she will start taking it twice a day.  I hope that will help. 

Friday, November 2, 2018

Trick or Treat

I'm late posting our Halloween fun.

Last weekend, Shelbie decided she wanted to put on a Halloween Party for her cousins and siblings.  She planned all the food, decorations and games.  She did an amazing job!  I despise Halloween but because this was so important to Shelbie, I wanted to do everything I could to make it a great night.  That meant, I had to dress up! 

I haven't dressed up for Halloween in over 3 decades so it seemed funny to be making the effort now but honestly, it was kind of fun.   Shelbie went as a deer, I went as a broken wind up doll and Sam went as a Firefighter.   The cousins all came in costume too.  She had fun food, great games but most of all, it was just great seeing everyone so happy.

The dessert table, caramel corn, 'used' band-aids, grave yard dirt cups, jello 'shots', cookies, and witches brooms.

I made a cheese ball in the shape of a pumpkin and rolled it in crushed Doritos

Hey, there's Stumps- our emotional support friend hanging around

Sam and his girlfriend as a firefighter and Dalmation

Me being a broken doll

The photo booth.  Shelbie took photos with her phone and then printed them out right away on Polaroid film.  It was so cool so most of the pictures I have are Polaroids!  

My Deer Shelbie! 
She was so happy and I was so happy to see everyone laughing and having fun.  We did some pumpkin ring toss, donut dangle and soda pong.

So, that was our Halloween!  Super fun.  We are already planning next year's festivities.  It's times like this when I feel so blessed that my kids and I can still have fun together!  We really missed Spencer but we kept in touch throughout the evening and shared pictures back and forth.

Monday, October 29, 2018

Bloom Where You're Planted

Every year, it seems, I come back around to this notion of blooming where you are planted.  I am always intrigued by people who successfully pull this off, in fact, I search out people who are doing this because I want to be that person.  I try to 'bloom' where I am, digging deep to accept what is, but I often fall short.

I follow a man on Instagram who was diagnosed with ALS-I'm not sure how long ago but I have watched him deteriorate before my eyes.  Contrary, he has not only bloomed but blossomed in the diagnosis of ALS.  I'm sure he and his wife and family have their moments of despair but they have really suffered well, at least in the glimpses of living they share.  They aren't just existing, they are living.  When he could no longer feed himself, he did an Instagram series about "Who's feeding Topher". He did a series of short videos of him lip syncing with his kids and acting silly. Today, he posted a video of him dressed like Frankenstein for Halloween singing, Putting on the Ritz with his friend.  He can't speak very well anymore but he can act out a killer Frankenstein.

It's so interesting to me that he is working in that space between reality and perspective.  The reality is, he is dying a very slow death.  Little by little, the faculties that we rely so heavily on for our mortal experience, are deteriorating.  He could very well sit in his living room feeling sad and sorry and no one would blame him.  Instead, he uses what tools and resources he can.  He directs plays at a Utah University and continues to learn and hone his gifts and talents.  He is an inspiration.

In that narrow space between reality and perspective lies this little shift that I think makes all the difference.  When life throws a curve ball and transplants you to a place you had no intention of dwelling, we often say..."Why did this happen?"   What would happen if instead, we asked, "What am I going to do with this?"  I've already asked this question at least three times today as I see things moving in a direction I'm not exactly happy with.  Just a simple shift in words, breeds hope.

Life isn't about whens and thens...it's about the here and now.

Friday, October 26, 2018

Happy First Birthday

Happy 1st Birthday to Spencer!!

It was one year ago today that he unexpectedly had a "Factory Reset" on his heart. I'm so glad that he managed to make it back so I could have another year with him!

A few weeks ago, when we were in Salt Lake, we met Spencer and his friend for dinner- the same friend who performed CPR and saved his life at 4 in the morning while camping in Zions National Park.  I have thanked him a million times but we have never spoken about the event.  I find that some things are better left unsaid...for the time being.   Over dinner, I finally asked him what that did to him and he was honest and it was not easy for me to hear.  He said he's never been so scared in his life and to this day, he still feels traumatized by it.  After it happened, he had to get a sound machine in order to go to sleep.  The two of them are still roommates and he said if Spencer starts coughing at night, his heart races and he immediately panics.  I feel bad that he has to deal with the remains of this.  I have watched my kids lose consciousness and it is something you never forget.

Spencer and his friend use humor to survive hard things like this, so while Spencer was in the hospital down in St. George, his friend recorded a series of video clips of Spencer, all with songs that had to do with dying.  They laughed about it then and afterwards but I didn't dare look at it until dinner a few weeks ago.  Anyways...I gotta hand it to them...They are kind of funny.  I mean, I have to look at them with my heart a safe distance and then I can laugh just a little.

Here's the YouTube link if you want to see what they did. Blogger won't let me upload it here.



So, it's been an interesting week.  I've been doing a lot of studying and research lately on stress and trauma.  This week, I suffered a major setback in my health and my doctor is getting pretty concerned.  80% of my joints are extremely swollen and red hot.  He did ultrasounds again and they are full of fluid.  He was going to try to drain some of them but he said, "There are too many to drain."  So, I'm on a mean dose of steroids plus he gave me another steroid injection and I'm on some other anti inflammatory meds.  I can't help but think this flare is directly related to this anniversary.

We think that we have dealt with trauma because we moved on; time passes.  We function.  I remember that early morning hour when I got the call.  I remember how I was afraid to even breathe!  I remember how I tried to go about my day in disbelief of what had happened.  One day fell into the next and we seemed to move along.  Every now and again, it takes my breath away when I catch myself remembering moments of this event.

At any rate, I'm glad we get to celebrate his life still.  That's a good thing.  I've learned a lot this week about life and how we deal with it and how it deals with us!

Thursday, October 25, 2018

I Hate This Blog

I'm going to be honest here.

I hate this blog. 

Every night, around the time I typically sit down to write, I feel nothing but dread.  Well, that's not true.  I feel dread and horror and frustration and anger and anxiety...and some other irritating feelings.  I want nothing more than to have something great to write about!  I would love to write a post that says...

Guess what, I got a full time job with amazing benefits and it's not cleaning up after people who can do nothing but complain!

Guess what, my insurance company loves us so much, they dropped our premium by $300!

Guess what, someone found a cure and my kids can now resume their normally scheduled life that was intended for them! 

I wanted this blog to be something good to read.  Something inspiring.  Something interesting.  Something that instilled the power to become in someone else.  Not something dramatic, depressing and boring but that is what I am afraid it is.  I don't want to write anymore.  I don't want to keep this going. 

I have been thinking about what to do, non stop, and trying to find clarity and purpose in it. 

I think this has become a sad and vulnerable place to be.  I've always had it all together or at least managed to appear like I had it all together but I don't, not anymore.   We are going through something hard and the hard times don't appear to be ending in the near future.  Things are becoming so hard, there is no way out and not just for me, but for my kids. 

I feel so stuck and so helpless.  Believe it or not, these feelings are foreign to me.  I have had moments when I felt stuck but they were fleeting, not lasting and so suffocating. 

But...

To quit the thing I love the most- writing, learning and teaching would be the same as dropping the final nail in the coffin of giving up.

So, I'm going to rededicate myself to this blog.  I'm going to rededicate myself to my life.

I'm not sure how things are going to change in my life but something has to.  I want this blog to be about thriving in chronic illness, not just surviving.  Here's to new beginnings...

Monday, October 22, 2018

Firefly

It was quite some time ago, when I met my first Firefly.  I remember reading about Fireflies, but it wasn't until I saw one up close, that I could see how magical they were.  On that warm 4th of July night, the dark sky all around us lit up in surprises of light.  The kids chased those lightening bug constellations across the grass, late into the evening.

Lightening bugs, as they are often referred to, light up to attract another lightening bug of the same species.  Scientists have found a species of Fireflies like none other in Indonesia.  Rather than lighting up sporadically to catch the attention of another Firefly, this species lights up simultaneously. There is no 'leader' they just light up together.  They found that 82% of these Fireflies find companionship in a night compared to the American species who only experience a 3% success rate when they go it alone and light up whenever they want.

So, what's the point?

The point is, we get farther when we have a tribe, a clan, a group, a safe place to shine. When we work together and help each other, we have more success in life.  I like the idea of the Indonesian Fireflies and I wish we could all be more like them. 

In family news...we are entering into week 6 of the kids being sick.  Spencer is still pretty sick.  He's down 5 more pounds in the last two weeks.  Work is becoming harder and harder for him to do.  Sam sounds horrible but he thinks he is improving and Shelbie is into week two of her virus.  No one has been to the doctor so we are just toughing it out.  I hope this isn't a theme for this winter. 

I found out on Saturday that the woman suing me for $25,000 settled at $8600.  I'm not happy with her at all.  I'm trying really hard to let go of the ill feelings I have towards her but it might take me a little longer before I can move on. 

Still no resolve on the health insurance battle.  I didn't even follow up today because I wasn't prepared to hear more bad news. 

So, that is where things are at this week.  Two more weeks until we head back to Salt Lake and finalize Shelbie's treatment. 

  


Sunday, October 21, 2018

The missing pieces

"If you can trust a puzzle company to make sure every piece is in the box to complete the puzzle, then why can't you trust God, that every piece of your life is there for a reason?"

Have you ever stopped to think about this? 
I have not ever thought about this until recently and now I think about nothing else.

How many times, have we gone to buy to a puzzle...if that was a thing we did often, of course, and stood there questioning what we would do if all the pieces weren't there? Surely, we would never buy another puzzle if we had such trust issues!   I don't imagine that is even a thought that crosses the mind of puzzle buyers when they go shopping, unless of course, they shop at a thrift store with hand me down puzzles, then you almost assume it will be an unfinished puzzle and you will forever be missing one piece. 

If I'm being honest, sometimes, I think my life came out of the lost and found box on the other side of Heaven.  I feel like lately, I am just wandering around trying to find my missing pieces and thinking to myself...There's got to be more than this...like when you opened your sack lunch at school and stared down the lonely peanut butter sandwich and said...this is it?  You're starving and a peanut butter sandwich is the taste of disappointment. 

I'm disappointed for a lot of reasons but mostly disappointed in myself.  I'm disappointed that I am so tired of trying.  Disappointed that I know what I need to do but I don't have the courage to do and disappointed that I don't have a clue what I need to do...it's the paradoxes of life that make it all so interesting and exasperating.  I'm disappointed that for most of my life, I had few problems trusting my Puzzle Maker to the fact that I would be given the pieces to my puzzle just as soon as I finished 'all the green pieces'.  Sure enough the pieces came. 

But lately, I'm questioning if everything that happens really is part of a plan and holds some eternal purpose other than mastering the art of complaint.

At any rate.

Life is about the line upon line concept, so it's no surprise that this concept of trusting in a God who bought my safety and eternal security with his one child he KNEW he could count on to save all the rest of us, is increasingly more difficult.  The stakes are higher it seems.  It's not enough to learn it once and you're done I guess. With each difficulty, a new and better version of my faith is required and some days are harder to show up with that fresh hope than others. So, this week, I stand  here, shaking my box of pieces back and forth in a effort to trust that it all means something and it really will all work for my good.



Friday, October 19, 2018

Life Hacks

It's Friday and you know what that means?

Another installment of Life Hacks by Kat...

Just kidding, it's not a thing but I do have a life hack or two for the week...not the usual life hack though.  This is when people do things to hack into your life and completely screw things up.   A little twist you weren't expecting, surely not on this boring, blog...

I think last week I mentioned the insurance problem I encountered because Spencer turned 24...it's a problem that continues to burn brightly in my life.  I thought I had it sorted out but I don't.  There is an election coming up and one of the issues in our State is that of expanding Medicaid.   There are debates on both sides of the issue and only recently, have I educated myself on this.  In my opinion, this is not really a conversation about Medicaid, it's an issue about the working poor.   That's me. 

Let me show you by numbers.

Not only was Spencer arbitrarily removed from my insurance plan, which I purchase through the exchange and get tax credits for, but all of us were forced from the plan and I had to go back in to the exchange and reselect a new plan!   Of course, I selected the same plan we've had because it's October and I have already 'paid' my out of pocket maximums of $6600 or something like that.  However, that's not how it works... The new plan, which is still my old plan, with a small income increase jumped up to $10,000 out of pocket plus an increase in the monthly premium by $400. 

What this means, is for the month of October, they are making me start all over with deductibles and crap!!!   All of our medical bills this month, would only count towards this new deductible because the government forced me to reselect a plan on the exchange!!

Before I freaked out, I did the math of what this would cost me for the year.  Based on an income of $42,000 /year and after paying all medical premiums, deductibles, out of pocket, mortgage, house and car insurance, car payment and utilities, I would be left with $7000 for the year, to cover food, clothing, gas, phone, entertainment, Christmas and birthday gifts, and weekly trips to the hospital in Utah, car repairs and maintenance...Just in the past two months, I've spent $1200 on car maintenance.

That is an impossible situation but that is the situation I am currently in.  I do not qualify for any government assistance programs, nor do I want to.  I was taught to work hard and manage my money, which I do.  I was taught the value of being self sufficient which I try every day to be.  I can not get a full time job that would allow me benefits and even the full time job I had at one time, refused to offer any benefits to me because of our high risk.  So, I have no choice but to be self employed, work 6 part time contract jobs and pay nearly 30% in taxes every year and get my own insurance plan so at the end of the day, I can still be dirt poor but also exhausted, frustrated, anxious and sick from all the stress.

This problem is what I have feared every day of my life.  Any hiccup in insurance or income, results in near devastation.   It happens without warning.  So, the problem in this country isn't the poor, nor is it the wealthy...it's me.  The person trying to do the right thing and working hard and working any horrible job in order to make ends meet...sort of. 

Spencer is still without his medication.  If I don't pay cash for what is sitting at the pharmacy right now, today,  he will lose it and we will have to start all over at the doctors for new prescriptions, because of the nature of the medication.  The cash price is going to be close to $300 but another doctor appointment will be half that, plus time so I'll probably pay it. 

I hate complaining, I really do but these problems I face on a daily basis are heart wrenching to me.  I don't know what to do.  Everyday, I face impossible situations like this.  Currently, all three kids are sick. Spencer has been sick since the middle of September with C-diff and a lung infection.  Sam got it and he's been down for almost three weeks and now Shelbie has it.  Their blood counts have tanked but I can't let anyone go to the doctor because according to the system at the pharmacy and doctor, we don't exist with insurance and I can't afford to pay non insurance prices. 

Thankfully, I have a really nice insurance company that is going to bat for me today and will appeal all this and try to sort it out. I've been doing it alone for three weeks but she reached out to me yesterday so I'm hoping and praying she can work some magic and put everything back to the original crappy plan I had and I won't have to start all over...because keep in mind...I start over regardless, come January! 

So, this installment of How your life is hacked...is brought to you by the United States Government.  Oh...my debit card was also hacked this week and I stood at the grocery store with $300 worth of food in my cart and no way to pay for it...It's been a red letter week around here!!  Yippee!! 

Wednesday, October 17, 2018

Nobody Told Me

I've been getting bored with my usual Pandora stations and Ted talks that keep me occupied while I sit for hours at the computer, in my car or cleaning offices.  Spencer was telling me about some Podcasts he listens to often and so I decided to check out the world of Podcasts.

More than 10 years ago when I was working full time at the Architects, I listened to Podcasts all day, every day, but in 10 years, they have certainly evolved and have grown in popularity.  As I was searching for something inspiring to listen to, I found one called, Nobody Told Me.  It's a mother and daughter who interview all sorts of people on every topic under the sun and the one question they ask at the end of the interview is...What was the thing that 'Nobody Told You'?  I love hearing what people have discovered along the path of life.  I love how each guest, from the top FBI Terrorist Negotiator, to the woman who wrote a book about losing her mother to breast cancer, there is something to relate to my own life.

https://www.nobodytoldmeshow.com/

Each day, as I listen to more and more of these Ah-ha moments, I can't help but think about my own "Nobody Told Me" thoughts.

Nobody told me I would need to be so independent.
Nobody told me that as soon as you figured it all out, everything would change.
Nobody told me you could be surrounded by people and feel so completely alone.
Nobody told me that politics and religion would be more important than friendship and connection.
Nobody told me that I would love my children with a love that is completely indescribable.


What is your Nobody Told Me truth...?

The next time I have my kids cornered in the backseat of the car, I am going to ask them what their truth is.  I'm thinking this would be a great tradition to start on New Years...To name your truth for the year and see how we change and evolve from year to year.

Tuesday, October 16, 2018

The Rise and Fall

Sometimes, I think if I were to write a book about my life, it would be called, The Rise and Fall.

There are times and seasons when we have it together and we rise to whatever the occasion presents.  At other times, we fall hard and fast.  I've experienced each of these moments so many times over the years, especially this year. 

The good thing is, with every fall, there is a rise. 
The good thing is, with every rise, there is a fall...It's all good. 

There are things to be learned on the way up, while on the top of a mountain with a breathtaking view, and on the way down, in the valley, where the water runs cold and clear and carves out a path through the rocks and wildflowers.  In the valley, it's lush and thick with new growth.  On the mountain, the trees are old and wise and the view like nothing else.


I think I'm currently in the valley.  I'm choosing to refer to my recent fall in life as the valley.  Instead of considering all the ways I have fallen short, I'm learning to see how the sun hides between the far reaching trees and casts a shadowy lace along the path.  The ground is soft and the lazy river feeds the moss and trees and it begs you stop trying to climb the slippery slope.  Somehow, we've been conditioned to like the mountaintops more than the valleys.

There are some pretty amazing views from down in the valley.


Thursday, October 11, 2018

Of Bark and Leaves

She calls me Kat.  For two hours, I unplug twice a week, set my work aside and close the door on the world of half-truths and mean people.  I shake off whatever the chaos of the day has been and enter the imagination world of 6 year old, little girl, dreams.  We make up silly songs, talk about mermaids and dancing.  We create and adventure.  We bake cookies and makes messes and we laugh like nothing else matters.  Maybe it's just me, but we leave each other better than we were to start, I think.

Shelbie had a photo shoot during our play time today, so we tagged along, down by the river banks.  The sun was wringing out the last bit of afternoon sun, the clouds chased circles around the sky, and the air was crisp. We sat on our stools of rock, made dinner of bark on plates of leaves. We ran through the trees, made walking sticks and found the river and stumbled on an amazing world that only exists when you play.


I love this time with her and the memories that flood my mind of days so long ago when I played in the haystacks on long summer days by myself, tended the field mice, dressed up the cat and hid in a happy world in the sunflower house, my dad planted.  In her eyes, I see my own kids who were once that small and full of imagination and dreams and it seemed I had all the time in the world to play with them but it all went by too fast!

I thought of this song by Priscilla Ahn...one of my favorites.

I was a little girl alone in my little world

Who dreamed of a little home for me

I played pretend between the trees
And fed my house guests bark and leaves
And laughed in my pretty bed of green
I had a dream

That I could fly from the highest swing

I had a dream
Long walks in the dark through woods grown behind the park

I asked God who I'm supposed to be

The stars smiled down on me
God answered in silent reverie
I said a prayer and fell asleep
I had a dream

That I could fly from the highest tree

I had a dream
Now I'm old and feeling gray

I don't know what's left to say about this life I'm willing to leave

I lived it full and I lived it well
There's many tales I've lived to tell
I'm ready now, I'm ready now
I'm ready now to fly from the highest wing
I had a dream

I still ask God who I'm suppose to be and how I ended up here but on these days, each week when I get to babysit this darling little girl, it doesn't really matter much, I'm where I like to be.  She feels like a gift to me. In these moments, life seems almost bearable. 

Wednesday, October 10, 2018

Updated Appointments





We had a welcomed change of plans in Shelbie's medical drama this week.  Our Neuro-Immunologist sent me a message and she has opened up a morning at the end of the month for her to see Shelbie.  She is on board with starting a trial of extended, high dose steroid or Rituximab, a chemotherapy agent.   I'm not sure if we will have a choice or not but we have not had good results with past efforts of high dose steroids.  The side effects are horrible and hard and the results are short lived.  Rituximab also has hard side effects but they are better managed and the results are more long term.  The downside to Rituximab, is that she will need a port placed, and it will completely kill off what little working immune system Shelbie has left.  She's on plasma infusions so that covers her but it isn't 100% perfect or protective. 

We have a couple of weeks to think it through and get some inspiring thoughts together. 

Last week was a tough week.  I joked on my social media that I just couldn't be emotionally there for Shelbie like I have been in the past and that I should get her an emotional support animal. I ended up getting her an emotional support person- a skeleton of me!  My kids call me Stumps, so that is what we called our new emotional support friend; for those moments when I am emotionally unavailable. 

Honestly, we are goofballs but it got us through a hard week!

I stuck a pin on her bones that says, "Normal People Scare Me"  Ha ha....truth right there!




Tuesday, October 9, 2018

Letting God be God

One of my favorite scholars; spiritual leaders, of all time, is Neil A. Maxwell. In my book of 'buoys'...the words and thoughts I hold on to for dear life, when things aren't making sense or hard with a serving of distress, I read his words...

"While we may be ready to move on, having had enough of a particular learning experience, our continual presence is often needed as part of the learning environment of others."

So, my personal plea is...Could you all please learn your lessons from me so we can all move on from here??!! Please?  Pretty Please? 

UGH.

When it rains, it pours and I don't see any sign of it letting up. 

In my effort to scale back my million jobs, I gave away two nights of office cleaning to my friend.  I figured, just one week ago, that I could still manage financially and it felt like the right thing to do.  Today, I found out that the Government decided to cut Spencer from my health insurance.  We found out after a doctor's appointment yesterday and while trying to fill a prescription, that he was no longer covered- since his birthday last month. 

Today, I had to spend the morning arguing with the Department of Health and Welfare why I wanted him on my policy until he was 26- 2 more years; which I have always understood was the law under Obamacare...The healthcare I love to hate.  They gave me all sorts of flack, raised my premium by nearly $400 and threatened to penalize me when I do my taxes, because they don't believe he qualifies as a 'dependent'.  Honestly, I had zero energy in my soul to argue with them so I just reassured them he did qualify, so they would get off my back because honestly, he needs his heart medication today, and I'm not screwing around with the government while he goes without.

The powers that be neglected to figure in young adults with chronic illness.  For Spencer to get his own insurance, his premium will be $400 minimum with a deductible of thousands!! He is barely making enough money to pay rent because he still hasn't been able to find steady work, just contract work so I will ultimately end up paying double premiums and double deductibles and that is far more than I have the capacity to make.  I'm not sure how to handle this.

I was able to talk to my insurance adjuster about the ridiculous demand for settlement I received over the weekend from the woman Spencer hit in April.  They are offering her $4600.00 which is still $2600 above and beyond chiropractic treatments she milked all summer.  He thinks the worst case will be that they end up paying her $8-10,000.00 which is still insane!!  Either way, it's coming back to bite me.  My premiums have already gone up exponentially.

At times, and without effort at all, I put God in a box. I lose sight of the point to life and as these problems, through no fault of my own, roll over me, I feel doomed.  I can see no way out from under it all.  I recently walked with a friend through an ugly, heart wrenching divorce trial.  It's been months of preparation.  Months of guessing and second guessing the outcomes. Months of listening to her weep for hours about how devastating each setback was to her case.  Months of hearing myself say to her..."Just be patient."  "Let God put his meaning on this."  "It may look bad now but somehow, it will all work for your good!"  Over and over, I told her of my deepest and heartfelt belief in the things I know to my core about God. So, it's really frustrating when I can't hold these truths for myself.

Tonight, I am trying to let God be God; to let him continue to allow these trying times, these discouraging moments that are beginning to feel like life itself and less like moments. I'm trying to watch how it will all come together for my good but even my best effort feels like a drop of sweat in a tumultuous ocean of trial.





Friday, October 5, 2018

Done.

Disclaimer: If you are looking for a feel good read...move on.

This week was everything I thought it would be and more. Hard. It was hard. The hardest week I've had in awhile, which isn't saying much.  Monday and Tuesday were so frustrating and by the time our last appointment of the day happened, I was done being patient and I had somewhat of a come apart with our Pulmonologist.  I am done with the tests.  I've lost track of how many CT Scans we've done to look at the same thing.  About the time when she suggested they do yet another 'walk' test to see what her oxygen saturation rate does, I lost it. 

"You know what? No!! We aren't doing another stupid walk test.  It's a 2 minute walk back and forth down the hospital hall that represents  nothing but a 2 minute walk.  Do you really want to see how my daughter is doing?  Let's all go for lunch down at the mall.  Watch her try to get from the parking garage to the escalators.  Watch how she has to stop every 3 minutes to catch her breath!  Spend the day with us, watch what I have to watch every minute of every day.  Watch how crappy her quality of life is.  Don't keep watching one single number that means absolutely nothing to me."

Of course, I was upset and my voice was shaking and I could feel the Fellow sitting at the computer, staring nervously at me and my face was hot and my heart was racing. 

"I can't do this anymore.  I can't keep chasing this disease.  What I want is for one doctor to be brave enough to just say, 'We can't fix this.'  That's what I want!"

I gotta hand it to this doctor.  She didn't defend herself, or medicine or any of our other doctors.  She simply said, "I know.  I don't live your life so I don't know exactly, but I know you are tired.  I understand you're done.  I don't know that any of us can fix this, it's so rare and complicated but I know we can try something."

That's really all I wanted to hear.  I'm tired beyond words of the run around with test after test.  After my little rant, she did tell me that she had reached out to our Oncologist and Immunologist with a plan and the consensus was it was time to start either a long term, high dose of steroids or chemotherapy.  The preferred treatment for CVID is chemotherapy, especially in light of her lung dysfunction and the fact that the natural course of the disease is lymphoma.   She wanted to get the opinion of our Neuro Immunologist still but chemo is her gold standard as well so I think that is where we are headed.  It still may take a few more weeks before that happens.  Shelbie will need a port because the last 9 months of chemo she had a few years ago destroyed her veins.

I'm upset.  I don't want to watch her go through chemo for a third time. I honestly don't know how much more we can manage.  Every day feels like another day we are drowning.

We got home late Tuesday night.  I was able to work a whopping 7 hours on Wednesday.  We were down again yesterday to meet with the cardiac surgeon and cardiac neurologist.  We practically got killed because of a serious road rage incident on the way down so by the time we got to the hospital, my last nerve was gone.  The short version of our appointments, is that they can't/won't repair the hole in Shelbie's heart and they believe the shunting of her tricuspid valve is due to pressure growing on the right side of her heart because her lungs are diseased.   The cardiac neurologist agreed that they shouldn't attempt to close the hole and she thinks the dose of epilepsy medication is too low so she bumped that up.

It was a long hard day!  We didn't leave the hospital until nearly 6 and met Spencer and his friend for a quick dinner before heading home.  We ended up in a broken elevator with a 5 year old girl.  I have no idea how she ended up alone in an elevator in the bottom of a parking garage but there she was.  We could hear her mom yelling from above..."Elsie, push the help button!  Push the button with the star.  Elsie!!! Can you hear me?"  The little girl was laughing but then her face would get serious and she would say, "I need my mom!" 

We kept yelling through the elevator door that the elevator was broken.  Shelbie was trying to get the mother's cell number but I was already calling Spencer who was up in the restaurant.  He found the family of this little girl and told them that she was with us and safe.  5 minutes later, a whole crew of men from her family came running to her rescue, through the parking garage.  It was pretty cool to see Elsie's dad and 4 Uncles all coming to save her! 

We got home at 11 pm and I had to drop Shelbie off and go to work.  On my way home, I stopped to get the mail.  In the mail was a letter from an Attorney.  I am being sued for $25,000!! The woman who Spencer hit back in April is suing me and my insurance company.  My insurance company has already paid out for her $5000 in medical bills but now she is claiming Psychological damage and loss of enjoyment of life!!  LOSS OF ENJOYMENT OF LIFE???!!! Don't talk to me about loss of enjoyment of life.  The police report says Spencer was going 10-15 mph.  The woman in her report claims Spencer, 'Slammed' into her.  She even wrote a sob story about how it has put stress on her marriage since her husband had to be patient with her because she was now a mean person and he had to drive her around quite a bit.  And, she had to take a week off from studying for her Master's program which caused her to nearly fail her class. 

I am so tired of people;  whiny, crabby, mean people who take advantage of others without any thought but a selfish, dishonest one.  I don't even know what to do with this situation.  I feel absolutely overwhelmed in the worst way possible.  I can't even approach this until next week.  I have an entire day in Court tomorrow to support a good friend and a wedding in Wyoming I am decorating for all day Saturday.  It never ends... 



What's New?

Christmas is coming up fast!  As a family, we are enjoying our little efforts to 'Light The World'! It makes all the difference in...