Sunday, July 31, 2016

Instead of Shoes


The youth in our ward just returned from a pioneer trek at Martin's Cove and Rocky Ridge.  In church, some of the youth spoke about the adventure.  There were a couple of talks that were outstanding.

One of the speakers told a story of a pioneer who was crossing the plains in the winter and had no shoes.  His feet were obviously in very bad shape and should have been amputated but he knew that if the rescue team coming for them, would bring him a pair of shoes, he would be alright and his feet would be spared from amputation. I'm sure this young man offered fervent and exhaustive prayer to be gifted a pair of shoes for the remaining journey.

The rescue team did arrive but there was not a pair of shoes for him.

Instead of shoes...

He was given a blessing of healing.  His feet were miraculously better the next day.  Completely healed and he walked the remaining leg of the journey...shoeless...in the winter...on a rocky ridge of ice and snow.

The story wasn't expounded upon but I like to think that because this man was a pioneer, he had immense faith.  He was mortal too.  I'm sure that for a moment, he felt shortchanged by the Lord when all he wanted was a pair of shoes.  Was that really too much to ask?  He wasn't asking for a free ride to Zion.  He wasn't asking for the trial to be over.  He wasn't asking for the Pony Express to save him...he just wanted a pair of shoes.  He just wanted to keep his feet. A simple request but what he got instead was a miracle.

There is no hierarchy to the problems we suffer or in God's ability to bless us, even with miracles.

It made me think how often I have prayed for...'just a pair of shoes'.  A simple request but the pair of shoes never come.  In some cases, I am still waiting on that prayer.  In many other cases, the pair of shoes came in the form of something much better, more profound, the very thing I needed but for whatever reason, didn't think to ask for.


I'm so good at living far below my privileges when it comes to the blessings in store for me.  I think many of us are good at being underprivileged. This lesson is a timely one for our family.

I've written before about our plethora of backwards blessings...We face so many trials and the blessings are there but they are hidden behind...yet another trial.  I get a bonus at work but the car breaks down and costs the exact amount of the bonus...A blessing but a trial at the same time.  It's hard to see these sorts of blessings.

It's hard to teach my kids or convince them that the blessings are there.  We have to be able to see with our spiritual eyes, even more so than our physical eyes.  As life happens to this family, blow by blow...or so it feels, my challenge as the matriarch and loving mother who wants more than anything to have my kids for eternity...must set the example to see life, not blow by blow but blessing by blessing.

That is going to be hard because really, we are all feeling battle bruised and weary.  I have let my confidence in God slip.  All I can see, all I want are the shoes that in my narrow and short sighted view will fix everything!  I know deep down, that I am not going to get those shoes...I am going to get something instead of shoes.

My final thoughts on this Sabbath is a quote from Jeffrey R. Holland

      "We must feel confident in God's hands.  This may be one of the Saviour's commandments that is, even in the hearts of otherwise faithful Latter Day Saints, almost universally disobeyed, and yet, I wonder whether our resistance to this invitation could be any more grievous to the Lord's merciful heart?  I am convinced that none of us can appreciate how deeply it wounds the loving heart of the Saviour when he finds that his people do not feel confident in His care or secure in His hands."

For this week, I'm going to look for something more than just 'shoes' and I am going to strive to feel confident in the hands of God who I know, gives good gifts to his children.


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Friday, July 29, 2016

Week 2

Last night, very, very late, we got home from two long days at the University of Utah hospital with Cardiology/Pulmonology.

15 hours in clinic
4 CT Scans
6 Pulmonary Function Tests
7 IV's
3 VO2 Stress Tests
3 Echocardiograms
3 Electrocardiograms

...half a dozen or so little melt downs of frayed nerves.
These hospitals are beautiful...I'm glad they are at least nice places to spend two days. 


We got some good news but we mostly got the news that at least two of the kids are advancing in their lung problems.

It's so very complicated.  I suppose the reality came slapping back in our faces that the best doctors in this country have never treated such a rare disease so all they have to base their exam on, is the normal, healthy-ish public or even the yardstick of the common diseases they deal with on a daily basis.

Let's start one by one...

Shelbie- There has definitely been an increase in growth of her granulomas in her lungs and Pulmonary Arterior Venous Malformations that are scattered about.  Sadly, there are many AVM's that are too small to fix but big enough to cause problems.  Still no word on the pulmonary embolism.  There was an error in the ordering of the CT scans and the first round was done without contrast so they couldn't get a good look.  Shelbie did a second CT scan late on Wednesday afternoon, but as of yesterday afternoon, the results still weren't back.

Her echo showed that darn hole in her heart.  With every beat, blood is crossing over where it shouldn't be.  The current trending studies, do not recommend fixing it because of complications but after two 'events' they will consider it.  Our doctor felt that the mini stroke Shelbie had last November was in fact a blood clot that had managed to pass through that hole and likely came from her lungs.

She did okay on her stress test that measures how the heart and lungs exchange gases like oxygen and carbon dioxide.  Her heart and lungs are only functioning at 44% of someone her age.  They expected her heart rate to jump to 192 during the hardest part of the test but it only got up to 166.  The doctor said that was a surprise and borderline low but still better than where he could get her heart with a pace maker.  So...she will have to continue to live with it.  Since this is the kids first V02 test, this will serve as the baseline but we don't know if it is lower than it would have been if we had done it last year or stable.

Our plan for Shelbie is try some inhalers and get her as much relief as we can but ultimately, they aren't sure what to do.  Her symptoms are so much worse than the numbers are and they don't feel that they can completely correlate the granulomas and AVM's in her lungs to her difficulty in breathing and functioning.  I have an opinion or two about this I will share later.

Spencer- Spencer has a great heart and great lungs!  No holes in either.  His pulmonary function tests came back nigh on perfect...but...he has severe asthma.  He can't even get through the pulmonary function tests so it makes no sense that he is having as many issues as he is but the tests don't pick up on it.   With Spencer, we have actual physical abnormalities that prove he isn't processing oxygen correctly because of the clubbing in his fingers, purple fingers and some other things so nothing adds up. It's confusing and perplexing and extremely frustrating.  Even our doctor feels lost as to what to do.

When addressing Spencer's passing out spells he has had for most of his life off and on, the doctor suspects that the problem lies in his brain, like the autonomic nervous system or in an electrical problem of his heart that wouldn't show up on any imaging.  Spencer gets to wear a heart monitor for 30 days.  I'm not holding my breath that any helpful information will come from this.

Spencer's heart response in the stress test performed just shy of perfect; at 93% what is predicted for a 21 year old.  He did show some stress and issues with his lungs even though they didn't catch that on the Pulmonary Function testing.  His lungs only performed at 78-88% of what was predicted. We will probably follow up with a pulmonologist.


Samuel- Bad new for Sam.  It looks like he is trailing down the same path as Shelbie.  A nodule showed up in his left lung.  It is likely a granuloma or it could be a larger AVM but I think they are more convinced it is a granuloma because of what the Echo showed.  Sam has many, tiny AVM's in his lungs as well, but again, too small to fix but big enough to cause issues.  His echo did confirm the AVM's are creating some shunting but it doesn't seem to account for the fact that Sam can hardly do active, physical things anymore.

I have watched him go from extreme activity and training to not so much.  He can't even make it up the stairs in our house without being winded.  When he was in the middle of his training, his resting heart rate was 55bpm...very low.  Sometimes, we saw it dip into the high 40's.  This week, his resting heart rate is 35.  That is crazy low!  An advanced athlete in his age group rarely gets below 45. An elite athlete like Lance Armstrong is in the 35 range.   Sam is not an elite athlete so this is worrisome.  When activity wanes, the resting heart rate naturally goes up, not down.  The doctor wasn't sure what to think of this but it isn't normal or good really.

Despite all this going on with his heart and lungs, Sam nailed the V02 testing and by 'nailed' it, I mean, he performed 118% over what was predicted for his age group.  Granted, this was an 8 min. bike ride and my kids excel at pushing through anything, especially 8 min. So, I wonder how much we can really invest in this and like the doctor mentioned, we don't know how much any of the kids have dropped off the charts because this was the first test we've done to measure any of this.



It's just so frustrating to have reports that contradict what the kids can do.  The technicians running these tests even make notes of how much the kids were struggling to do any of these tests so I know it's not just in my head!  It's an unbelievable thing to see.

I asked around on the DC support group if our experiences sounded familiar and sure enough, it was a familiar routine to many parents...the tests seem okay but the kids are suffering and some have even passed away, with tests that showed they were fine.  It's crazy and emotionally draining.

I have some theories that I am checking out with the National Institute of Health but they are just theories.

I wanted to make this trip a little bit fun but it really wasn't.  We were tired and frustrated and our one plan to have fun fell through and I hadn't taken into account that we would have to spend an extra day at the hospital.

As a single mom, all I ever get is the homework, the illness, the chores...their dad gets the weekends of fun.  I spend the weekends trying to get work done that I couldn't do during the week because of sickness or medical trips.  I want my kids to experience one normal thing like a family vacation that doesn't include doctors! Or a vacation that I don't have to limit what we do because money is so horribly short in supply.  I can really get so resentful and bugged at times.  This was one of those weeks. Still...we try to laugh and have as much fun as possible.  And, someone left an envelope of cash on my door late Tuesday night.  It was such a blessing and helped immensely with hotel costs, gas and food.

Sam and Shelbie finished their V02 tests an hour before Spencer so we went to find them some food since it had to be done fasting.  There was a sculpture outside of 4 little kids (you can see it through the window) so Sam, Shelbie and Abby (Spencer's girlfriend) pretended to be the statues.  It was fun!  Abby is a great sport to join in our craziness! 
 We did make a run to Park City because they have tube rides done the ski jumps at Olympic Park.  I thought that would be a fun thing to do but they had to cut the rides short because of other events going on so we missed the opportunity.  We did sit and watch them ski jump into a huge swimming pool.  That was pretty interesting.
The free trolley ride. 
 We wandered downtown and spent some time in art galleries and the Family History place downtown.  They took our picture and had a little visit with some missionaries. It was so blazing hot in Salt Lake, unbearable for my little troop!
Park City after the testing was all done.  There is a restaurant called Fletcher's so the kids wanted me to stand under it...since my maiden name is Fletcher...but you can't see the sign very well. 

I wore my favorite t-shirt to the hospital yesterday...you can't see if very good in this picture but it says..."I literally cannot."  Truer words have never been spoken!



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Sunday, July 24, 2016

We come. We go.

One of my favorite quotes is by Rod Steiger...

We come. We go.  Somewhere in between, we try to understand.


Sometimes, I think I come and go from my own life so much, there is more, I realize, to learn about myself and try to understand.

We come and go from each other's life as well and hopefully, in that process spend more time trying to understand than judging.  After all, in many cases, it is in the understanding of others where we learn about ourselves.

This week, a girl from my ward had her first baby.  I don't even know this girl.  I know of her but I have never even been in close enough proximity to her to even say 'hello'.   Through the ward Facebook page, I learned that her baby would be born with some health issues.  Some pretty serious issues.  Her internal organs were growing outside of her body, called an omphalocele. She also has an opening in her spinal chord and problems with her leg.  Pictures were posted of this little angel and prayers requested.

As I read this girl's update on her baby, I was so moved.  The medical jargon seemingly tumbled onto the page as if she had always known the ins and outs of Omphaloceles and Myelocystoceles. I had this feeling that like me, she had been prepared for this moment. Strangely, I even felt excited for her! I have never experienced that feeling before when knowing a mother has a child born with problems but it was clearly excitement that this girl is to be entrusted with such a choice spirit.  She may not have realized it, but I know that God has qualified her and will yet bless her to be a companion, an advocate and a mother to this sweet baby.

 As I looked at the beautiful picture of this sweet, baby girl, I felt like Heaven itself was so close.  For a moment, I came to understand more about my own story.  I wish I knew this girl.  I wish I could just call her up and tell her, in what may be her most anxious moments, that she was chosen to be a mother to this child and to never lose sight of that.  This child, however long remains here, needed a companion on this journey she consented to. Though there will be moments of sadness and fear and despair, the adventures with prayer and the miracles and mercies from Heaven will be such a respite.

So, often over the years, I have seen my role less as a mother and more as traveling companion with my kids.  I imagine that we were more classmates and friends, than mother and children in the pre-mortal existence.  I feel like maybe, we were tutored together on the problems and challenges we would face here and shown the way to get around them, over them and through them.  I may have arrived first, but someone had to be first.  That doesn't mean I'm any more qualified to teach them than they are to teach me.

I love that we have spent the last 24 years, learning about life together.  I love that they are mine.  I love the journey and growing that we get to do together.

I love looking at the picture of this newborn baby girl with a mountain of challenges ahead of her.  I can almost see her resolve to be here.  I can almost sense that she is okay with this.  I can see her giant spirit already teaching those around her about the mighty strength in small and simple things.  I hope that in the quiet of a reflecting moment, this new mom can gaze into this baby girl's eyes and instead of wondering, Why me?  Can feel instead...Lucky Me!

I am reverenced at this little lesson of understanding I stumbled upon this week. Not the kind of break and respite I thought I needed but it did strengthen my mind.  It has helped me refocus my own life and helped me find a little more determination as we face what I hope will be a week of plans and help from Salt Lake team.  When I'm feeling anxious and tired and even put upon, I will think of little Gabby and probably look at her picture one more time and remember that I saw that same look some 24 years ago when my own special spirits began arriving, a little less than perfect.



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Friday, July 22, 2016

The Width of Life


Today didn't exactly go as planned.  Not in a bad way, in a surprising way.

9:30 this morning, I received a phone call from one of the hospital administrators who asked if Shelbie would be willing to have her picture taken to hang in the hospital in the new infusion therapy department.  I was really surprised!

The administrators decided that they wanted black and white photos of some of their long time infusion patients to hang in the corridor of the new infusion therapy.   It was even more fitting that it so happens that their long term infusion patient is also a patient at Huntsman Cancer Center...Oh, that is fitting because our hospital is officially a satellite cancer clinic for Huntsman!  Yay for mighty miracles! This is huge news which I will elaborate on later.

Shelbie was excited to participate in this way and hurried to get ready for professional photos from the hospital photographer.  Along with her picture hanging larger than life in the new unit, they asked her to include what inspires her to keep going.

That is a long list of people, things and thoughts.  She narrowed it down to one saying by Diane Ackerman that has inspired her.
I have thought about this quote all day.  Sometimes, all I ever think about is the length of my life.  With blinders on, I look ahead to what is coming next.  I never stop to consider the possibilities of anything more than what I already do.  Those things you do because, it's just what you do.  You do what is expected of you, what people have learned to count on, rarely deviating off the beaten path and designated course.

I think about my kids and how much they veer off from the length of their life to include the width as well.  They do this very well!  Some better than others but I see a width and depth to their life, not just a length.  As a mostly uptight mom with a mission to live a safe, lengthy life, I can sometimes make the mistake of squelching the width out of their fun.

I usually come around.  I found very quickly that I could either embrace their daring spirit or lose the chance to be proud of their accomplishments and fearlessness.

I guess it boils back down to my realizations yesterday while at our appointment in Utah.  My kids really don't look as sick on the outside as they are on the inside.  Shelbie continues to set goals and stretch herself to keep on going even when giving up would be completely understandable and even acceptable.

It's something to think about.  Next weekend, the boys will be expanding the width of their life with a bucket list activity...Skydiving.  I'm not extremely excited about this but I will be there cheering them on and witnessing their daring spirit as they follow their 'Must'.

Everyday I learn something new from my kids.  It is inspiring to see them step up to life and never back down, even laugh in the face of adversity. It is that spirit that gets us through.
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Black Box Warnings


Today was a pretty simple day at the hospital.  We were at the University Hospital to follow up with Immunology and Shelbie's new dosing of IgG.

Our doc was pretty happy to see that Shelbie seemed much better than she was 3 months ago after having been through a rough biopsy and 6 weeks without IVIG, since we were transitioning care from local providers to specialists in Utah.

The question in his mind has been, are we doing more harm with the IgG treatments than we are good?  He seems to be a real numbers guy and I often feel guarded when it comes to talking about lab results.  There always seems to be a huge gap between her low, somewhat normal labs and the way she feels.  It was good to have that 6 weeks without a treatment so we could see how she did.  She was sick all the time and had to be on antibiotics.  So, in my mind, it's a no brainer...the IgG replacement is definitely giving her a better quality of life.   It also stabilizes her platelets which bounce around.

Our doc agreed and we will continue the plasma transfusions and reassess every 6 months.

But then...as we were getting ready to wrap things up, I mentioned that next week we are going back to sort out the pulmonary embolism Shelbie has and her heart issues.  He was panicked when I mentioned that.

There is a black box warning on the Hizentra, the plasma brand we use that it can cause blood clots.

It's never easy.   It was sort of a dramatic moment the way he addressed that news.  He immediately made it clear that it could have been caused from the plasma.  He made sure we understood the risk we were embarking on by continuing with this treatment plan.

I don't feel in my gut that it was caused by the plasma and I don't see that stopping it is going to be the best thing either.  Clearly, we are between a rock and a hard place and he has no idea what the right answer is for Shelbie either.  I don't imagine he will be wasting one second in meeting with our pulmonologist and cardiologist.

It does feel nice to know that we have a team that actually works together and communicates regularly and  gets along.  I haven't had to beat down some of the egos that providers can grow into so quickly it seems.  It's so refreshing to be in the midst of doctors who don't feel like they are competing or trying to act like God.

At this point, it is just too soon to say where we stand with the blood clot issue.

It happens over and over again...as I sit in these appointments, I am filled with gratitude and clarity that my kids are clearly being cared for by a loving Father in Heaven.  Shelbie's situation is so complex and life threatening but she has been given the gift of life.  The gift to press forward with Faith.  Some days, it can feel the opposite of that and certainly, it is one of those things that you don't see the gravity of the blessing until you see the weightiness of the trial...and...we try not to give the trial any attention until we sit in appointments like this and then, I am overcome with amazement at the blessings we nearly forgot to notice, let alone count.

Guess what...today, we encountered another ruckus at the hospital that required the police to show up!  Twice in a month.  What are the odds of that?  We were waiting in the lobby, at Starbucks because we arrived a little early.  A man went up to the counter and was being incredibly mean and using the most obscene language to the workers.  A woman beside him suggested he calm down.  That started a shouting match and extreme language and escalating anger ensued.  The man left and Starbuck's gave the woman a free drink.  The police showed up and the woman slipped away so she wouldn't get in trouble.  The police literally walked past her, nearly brushing up against her in the crowd of people.  She was right under their nose but had no idea.  There's an analogy in there somewhere.  It was interesting to see this all unfold but still, with all the violence in this country today, I was a little worried that things could have gotten out of hand.

Well...that was that.  I am wiped out.  Completely exhausted.  I don't even remember driving the last hour to get home.
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Thursday, July 14, 2016

Universal Lessons


What a week of lessons from the Universe... Coincidence, irony...call it what you want.  I call them postcards from Heaven...the little things, messages, that remind us there is something bigger at work in our little life.  Things that a loving Heavenly Father needs us to learn.  I even picture in my mind that these little postcards are signed by God himself with the tag line...'Having a wonderful time! Wish you were here!'

The tagline on my return postcard, would likely say..."In case you were wondering...Life is hard.  I wish I was there too."

But I'm not there.  I'm still figuring things out here.

Earlier this week, I was in the Temple.  It was the one and only time I have been in the temple and felt more agitated and anxious than I felt outside of those sacred doors.  The temple has always been the one place when my heart is still and mind is clear and I can become one with my Father in Heaven.  I can be still...really be still and figure some things out.  For some reason, that didn't happen.

I had gone for the soul purpose of continuing my wrestle to understand the purpose of my struggling, hard life. Is my life just about taking care of sick people and then working excess hours beyond caregiving to try to pay your dues that this ridiculous world requires, just so you can dwell in one little corner ?

As my luck goes...an elderly lady I was standing behind passed out!  She fell back into me and I lost my balance and we both went down.  It all happened in slow motion.  When I looked up, all I could see was a tiny room crammed with women in white dresses and a little, frail elderly woman agitated, somewhat hostile and disoriented laying in my lap.  But, at the same time, I was calm as could be and all I could focus on were the piercing grey eyes of this woman and she looked at me, moments later and asked, "Were you sent here from Heaven to be my angel?  We could be best friends."  And my response to her, "I need a best friend."

My heart was heavy.  I wanted to leave.  I didn't want to stay and finish what I had started.  As I have pondered on this, perhaps my problem is that I am already living my purpose.  Maybe I am already right where God needs me to be...taking care of everyone.  I just wish I was more aligned to that purpose.  I'm tired.  I wish I wasn't tired.  I guess I'm just tired of trying to make it all work.  Saving lives both physically and spiritually is exhausting.

As I left the temple, I received a distressing call from a young woman who said she needed a safe place to be and could she move in for a couple of weeks until her other plans worked out.  Of course, I didn't hesitate.  All three of the kids and I worked until 2 am trying to get the bathroom done, and a place carved out in the chaos upstairs so would at least have a quiet, safe corner to be.

Some unexpected things happened a day or so later, and it became apparent that I was being played and manipulated and it was not a pretty thing. I try to be loving and helpful so it hurts deeply when a needy person is not who they appear to be.  It's such a raw, vulnerable feeling when that happens and I don't manage that kind of thing very well.

On the tail of feeling angry and upset about that, my car got hit while I was cleaning a house early this afternoon.  The guy told me he just 'tapped' the bumper but when I walked out to survey the actual damage, the first thing I saw was his front bumper laying on the pavement.  Wires were broken off and I feared the worse for my car!   He told me that he had spent 30 min. prior to coming to find me to try and pull the dents out himself and wash the paint off.  Even after that...the whole side of the back bumper was nothing but white paint.  Almost solid white paint, scratches, dents.

I wanted to be mad especially considering he wasn't properly insured but when I looked at him, he looked about as downtrodden and run down with life as I was.  I could see sweat on his brow and a reel in his brain of just the right words he was preparing, that might soften the explanation to his wife at home with their three tiny kids, why they no longer had a car that would run.   I was overcome with mercy for him.  For one small moment, I felt like I loved him the way God loved him.  He's just a young kid, married, trying to get an education and make a place in this world for his little family.  He was apologetic and accidents happen.  We were both hurt.

We all need to be treated with a little more mercy and forgiveness in life.  He spent even more time scrubbing paint off, he sort of made it worse because he actually took my paint off but he tried.  He tried to do the right thing in light of the circumstances.  My car still runs.  It doesn't sound very good in the back end, there is something not right but there's not much I can do now.  It's not like it is a nice car anyways.

So many things to learn.  I don't always understand the whys and hows but clearly, Heaven is near and has a message for me.

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Monday, July 11, 2016

Chasing Carrots

A couple of weeks ago, I was cleaning for a friend and she showed me an art book she had by James Christensen.  He is a science fiction/religious artist I guess you could say.  His characters are just that, characters borne from his imagination yet are rich in layers of deep and thoughtful meaning.

I knew of this artist and have seen his work around but never really looked much deeper until my friend pointed out to me what some of his paintings meant.  This is one that really stood out to me.

He calls it, The Burden of the Responsible Man...
The Burden of the Responsible Man- James Christensen

It kind of made me laugh because the guy is carrying a Hedgehog...Shelbie's Hedgehog has become my little responsibility since she hasn't had any energy to take care of him. So, he is just another little piece of baggage to add to my growing collection.

James describes this painting as one that he did when he felt burdened and overwhelmed with everything he had to do and all the expectations that people placed on him. He said he felt like life was taking everything and giving nothing back in return.  Yet, there was always this carrot dangling in front of him that he felt compelled to follow.  Being the responsible person that he was, he kept plodding along.  Eventually, things got better and he could see that his trials were some of his greatest blessings.

Does this sound familiar or what?  It does to me.  Life takes and takes and takes...I give and give and give in hopes that somehow, some way it makes up for the deficit in feeling purposeful or holding my grasp on 'normal'.  The carrot dangles just out of my reach.  Always just beyond the tips of my fingers.

Sometimes, I wonder what would happen if I just stopped chasing the carrot.  If I stopped being so responsible...If I didn't try to be everything to everyone.  I wonder what would happen if one day, I just decided to remain 'undone'.  There have been a few times this year when that exact thing happened just out of shear exhaustion and circumstances and it didn't end well.  There have been a few who were extremely disappointed in me and didn't spare me their reprimands for being less than attentive.

Still...

It's a tempting thought and the more I entertain this idea, the more I can see how it could spin off in all sorts of direction and meaning.  In my black and white world, it would certainly look a lot like giving up.

I don't imagine that I'm going to be anything but responsible in the near future.  I guess you could say my kids are one of the carrots that keeps me getting up to live this life day after day.

I have been thinking about the lessons to be learned this year.  There are a few I have recognized to be lessons, I'm just not entirely sure I have completely learned them.

Today, the boys have been working their little fingers to the bone on getting the bathroom done.  Bless them!  I have grown extremely tired of this project and their fresh energy is meaningful to me. They stripped the vanity, primed it, cut off the moldy parts and got the first coat of paint on!  Spencer also fixed Sam's bedroom door that hasn't been closing properly for the past year.  I'm so grateful.

I can say for certain, that one thing that has come out of our poverty and scarce living is the principle of hard work, resiliency, and resourcefulness.  I have always thought it was important to teach them to be self sufficient and responsible.   I can't think of how I really would have been able to do that if life had of been all fun and games on easy street.

As I look at the bathroom and what we have been able to accomplish as a family in getting it repaired for next to nothing, I see in the imperfect work, a family that just figures life out, no matter what.  That makes me happy.  I know there will be many who, if given the chance would find all sorts of things wrong with our bathroom remodel but I think it's perfect.  There's a story and soul in every inch of that room.

What's in store for tomorrow?  More chances to be responsible...more carrot chasing I suppose.


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Saturday, July 9, 2016

Highlights

It's been a long time since I let so much time go between posts.  Life is hectic and a little stressful these days.  So, today I will just hit on the highlights for the week.

Spencer got home last Sunday and his main squeeze Abby has been here all week as well.  She is lovely and delightful.  She carries with her this sense of calm and peace.  Her spirit is so sweet and she seems to just be part of the family.  It has really been awesome to have her around.

The bathroom is coming.  The boys tackled the tile laying earlier this week and today I grouted and painted. I'm not happy at all with the grout so I think I will re-do it early next week.  It's not the brand I am familiar with and I didn't love how it went in.  Anyways...it's progress.  I just have to finish the vanity and then get the plumber over to hook everything back up.



There have been some stressful moments this week- our oncologist had to cancel our appointments for the 20th.  The only days he could reschedule for, we already had booked days.  Now we are out until the end of August which is not great.  Even his nurse said this made him a little nervous but we really have no options.  I feel that heart and lungs are giving us more grief than bone marrow right now.

Friday afternoon, Shelbie was asked to do a family reunion photo shoot for our good friends at Elk Lake, a couple of hours from home.  They invited our family to join theirs for dinner as well.  They are a great family!  Everyone was so friendly and fun.

It was curious to me, to see how different my kids are from normal kids their age.  Our friend's grand-kids are around the same ages of my kids and they were so full of energy!  The difference was staggering to me how little energy my kids have.  I never really notice how much we have declined in quality of life until we leave our little, quiet existence and mingle out in the world.  Sometimes, it rattles me a little but then we get home and everything seems alright again.
Elk Lake-2016 Such a beautiful place! 

On the porch, relaxing. Spencer, Abby, Shelbie, Sam


We had a major setback on our way home last night...For about 45 minutes of the trip, we were driving on a dirt/gravel road that is extremely rough and in the middle of nowhere but a bunch of hills and mountains.  It comes out by Henry's Lake in Island Park.  Just as we got to the paved highway, my battery and seatbelt lights came on the dash.  I could feel my engine start to sputter and I think my heart stopped for a minute.  I couldn't figure out how I could have a low battery when I was driving.  I instinctively shut everything off- the radio, the AC, the lights and warning signals turned off.  I had Shelbie look through the owners manual to find out what it means.

The owner's manual said it was a sign of a major malfunction in the electrical system or alternator and to pull over immediately.  I was not about to pull over.  I kept thinking about how high the bill would be to tow my car from Island Park which is just outside of West Yellowstone, home.  So, I just kept driving and the warning lights came back on.

I was surprised by this little issue.  I was thinking if anything was going to go wrong, it would be a tire problem.  The road was so rough for miles and miles and my tires, as it is are not good.  They are in terrible shape.  Every week, I have to put air in them.  They lose nearly 15 psi every few days.  I put air in them before we left and I noticed they were low again when we left Elk Lake.

I was so tired and had a splitting headache.  Tired to the point I could barely keep my eyes open and then to have the windows up and no fan or air moving in the car sort of complicated my situation.  I finally decided if we could make it to Ashton, I would pull over.  We did make to Ashton and I pulled into a gas station to get us some cold drinks.  The kids can't regulate their temperatures very well and don't manage the heat at all.  I stayed in the car with the engine revving in a lame attempt to keep a charge going while the kids ran in.  I Googled the problem to see if there was anything I could do myself to keep the car running.

All I found was that we were in a dire situation.  The Hyundai forum said that if that kind of problem happens at night you have very little time to pull to safety because the headlights will drain whatever power you have left. It was already almost 10pm and dark.  When the kids got back in the car, I announced that the only way we were getting home was with a combined spirit of faith so we had a prayer that we would make it home safely and that the car wouldn't die.

That last hour of the drive, I bounced between being angry, frustrated, anxious, fearful and sad.  It really is unbelievable that every day I have to deal with some crisis!  Oddly, I didn't even try to make sense of why this was happening to us.  I'm not sure if I was feeling too overwhelmed to care or if I really didn't care or maybe I actually left the problem in God's hands.

At any rate, we made it home and I dropped the kids off and then Sam followed me to the repair shop.  I knew that as soon as I turned my car off, it wasn't going to turn back on and I didn't want to pay for a tow truck.  It sputtered and hesitated all the way to the shop about 20 minutes from home.

We'll see on Monday what kind of bill that is going to be.  I have felt sick all day.  Sick and tired. But as usual, we have the difficult situations that somehow, someway, work themselves out.  I am trying really hard to hold on to the blessings in the chaos...we made it home!  That is pretty amazing not to mention merciful! It was an answered prayer.



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Monday, July 4, 2016

Happy Fourth

Happy Independence Day! 
I didn't do much today.  I had to work this morning and then the Wasband invited me to have lunch at his place with the kids and his niece and nephews that are here going to school from Indiana.  Sam invited some friends, Shelbie had a few over and Spencer brought his main squeeze Abi.   It was a great crowd and Brian always has tons of food and some really great yard games. 

I wasn't there long, just about an hour but it was fun to visit with everyone and watch them enjoy each others company.  I will always be grateful that my Wasband and I can get along and do these fun things for the kids.  Truth be told...he did all of it!  I offered but I think the 4th of July is his favorite holiday of the year! 

He spray painted a giant Twister game on the grass, had a massive Jenga game he made out of 2x4's and a life size Kerplunk!  After I left, they were joining the neighbors on their huge slip and slide that runs down the hill they live on and another bbq and fireworks tonight.  

I had to work this afternoon and receive a little dog I am dog sitting til tomorrow.  I also have to work tonight. It's always a good day seeing the kids laugh and have fun.  For dinner, my good friends, the Hendricks took me to Driggs.  It was a beautiful drive and awesome company! 




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Sunday, July 3, 2016

Something great is about to happen...

Or is it?

I've decided that we grow up on fables.  We raise our kids on fables; fables or stories that explain the reason for things, the morals of life's lessons.  They seem to make sense, they are comforting and so we invest a lot of hope and a lot of faith in the fables.

I think it is human nature to have this intense desire to make sense of things.  We rush to put meaning on the events of our life, even elbowing God out of the way.  It's especially critical, we think, to do this with the trials that really set us back, test our faith, drain our resources.  We try to silver line it, find the good, express gratitude for the tiniest mercy or blessing.  We feel our way through the dark of the hard times,  holding on to the hidden meanings we search to rescue and puzzle into place.

I've lived my life believing, that if you live all of the commandments, if you are obedient and kind and charitable, your family will be blessed and protected from the adversary.   I believed that to be true so imagine my horror when my tweenager, came to me with a devastating confession of a wrong choice?  My first thought was...this kind of stuff isn't suppose to happen to us! In my less than humble way, proclaimed to God..."We are doing everything right!"  As if he hadn't been paying attention.

I learned a valuable lesson during that time.  Bad things still happen to good people.  It's part of our learning and growth...another little thing we tell ourselves when there is no other way to make sense of it.

If I had a dollar for every time someone said to me or I said to myself...
"Something good is right around the corner."
"This is just a test, it's not going to last forever."
"After the trial come the blessings."
I would be living a much different life.

These are all promising thoughts that lull is into a belief that "This too shall end."  Except, we think that means it's going to end after 6 weeks, maybe 6 months, maybe even a year of trials...but it's going to end and at that end is going to be this brand new, shiny, gleaming, awesome blessing you can scarcely imagine right now and this life of abundance is going to be the new normal. I guess there is some truth to this...I've seen it recently in the people around me.  Clearly, something amazing came from their stint with adversity.

Think about this...

Maybe something great is about to happen but that phrase about to happen...doesn't necessarily mean next week...maybe it means in the next decade, the next two decades...maybe not even in this life.

Noah, Abraham, Joseph and Job...I can relate to.  I don't believe I am in the slow cooker of life because I'm any sort of great leader. I can't even say for sure that waiting in this fiery furnace of affliction is maturing me, or leveling my perspective or broadening my understanding.   I wish I could say for sure how I am being prepared, for what I am being prepared and- if there have been opportunities my way...I'm pretty sure I missed them.

I don't really understand the whys and hows of what God chooses to do with us.  I could speculate but that is just another made up story to make me feel better about things.  It's a strange time and an uncomfortable predicament.  Oh how I wish it could be remedied with a casserole, some chewy chocolate chip cookies and an afternoon at the spa.

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Friday, July 1, 2016

Looking Ahead


As our Pulmonologist, Dr. S promised, she met with our Cardiologist Dr. W. on Monday afternoon to discuss Shelbie's situation.  I've spent a great deal of the week, working with the Medical Assistants to get all the testing scheduled and our team assembled and appointments with each specialty co-ordinated.  After all that work, a nurse called me yesterday to say she wanted to move Shelbie's appointment with the Oncologist a week ahead, leaving the two boys.  I would have normally said yes but the thought of redoing everything we have worked so hard on this week, felt like a bridge too far.  It would be impossible to three other docs to move their schedules so we could come a week early.

It's going to be a heap of things and it will feel a little crazy. I was hoping to do the testing in the next week or so but we have to wait until the end of the month. So, it will all be done between two weeks and some very busy days.  Lately, the Wasband has been joining us on the medical trips but he will be missing in action this month due to work assignments but we'll get by.  It's not like the kids are babies or anything.  Those were crazy days when I did stuff like this by myself and they were little.

This time, they will each be doing something on their own at one point in the 5 days of appointments and testing just because I can't be with three people going three different directions.  One of the days, one of the kids will be down in radiology, one will be visiting with the cardiologist and one will be across the hospital with pulmonology. I'm having a little bit of anxiety about that and wish they would have spread things out but I guess we'll make it work. Missing 6 days of work is going to to be better than missing anymore.

The bathroom hasn't had much done to it this week.  I've had some things come up I wasn't planning on dealing with.  I'm hoping to get it finished by Monday, fingers crossed.   It's all sheet rocked so tile is all that is left.

Spencer will be home on Sunday but will be spending a few days at his dad's with the other kids for the big holiday weekend.  I can't remember the last time I had the kids for 4th of July.  My Wasband loves that holiday and he has created some really fun traditions around that day so I hate to disrupt the good things he has going.  His next door neighbor is a pyrotechnic guy and so those two spend several days wiring up fireworks. It's an impressive show.  My Wasband invited me to join in the festivities but I'm not sure if I will be doing that or staying home to work and get the house back in order.

I guess that is the extent of life around here.  Today is Canada day.  So shout out to my Canadian friends.   We may celebrate a little later with Poutine and sparklers!  You can tell I'm really into the day.
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