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Showing posts from November, 2015


Sunday, I asked Shelbie to take a picture of Spencer and I.  It took nearly a dozen tries to get something remotely decent.  His eyes were closed, mine were closed, someone wasn't looking.  We never did end up with a picture that I was happy about or that I could successfully layer on the anti aging filters, make the lighting more agreeable, whiten my teeth; you know, make the picture look just a little more than perfect.

So, we end up with goofy smiles, harsh lighting, just an all round silly picture.

An outtake.  A do over...Try again.

Today has been one of those outtakes.  A collection of things I wish we could just do over.  Scrap the day and try again.

Today, Spencer drove nearly all the way back from Utah after just driving back there yesterday, so he could attend an appointment with our new Hematologist. He would have just spent the night but he had a job interview in Salt Lake this morning and this doctor appointment in Pocatello this afternoon.

I have invested my heart a…


Another week of gratitude wrapping up.  The end of the week seemed bring with it a bit of a respite from hospitals, illness, discomfort and even the emotional roller coaster came to a halt long enough to catch my breath.

I had every intention of simplifying the holiday but that dream was nothing close to the reality that transpired.  This was Spencer's first Thanksgiving with us in two years and it was also my Wasband's nephew's first Thanksgiving since he got home from his mission, so it just got bigger than anticipated.  Part of it was that I was home alone the night before Thanksgiving.  The kids went over to their dad's and spent the night.  The quiet and aloneness wasn't terribly fun so I just kept cooking and baking until about 1 am, it all got out of hand.  It's also a holiday miracle because food hasn't been my priority since Spencer got sick.  The whole Salmonella thing just messed with my head.  So, I did a lot of hard things with food in 24 hours…

With Gratitude

Happy Thanksgiving.

It's been a month of tribulation; trials I couldn't even see coming.  Tests that seem unbelievable and beyond what I ever thought my limits of testing could be.  Yet, in all of that, I can't deny that we are blessed.  Beyond measure.

Three months ago, I signed up for a class on Taxonomies.  Taxonomies are tiny sketches of collections.  Every year, I try to take at least one or two classes.  One of the classes is usually a self enhancement kind of class like something from Brene Brown on the Gifts of Imperfection.  This year, I did Arianna Huffington's class on her book Thrive.  I typically wouldn't describe myself as a person who thrives...mostly survives.  It was a deep class, learning to thrive is going to be a process for me.

The second class is usually something in the arena of writing or something creative.  This year, I have been interested in art journaling, hand lettering, this taxonomy class seemed like a simple place to …

The unexpected

Today was so completely unexpected.

It started out okay.  Shelbie seemed to be doing better.  She was not in pain and so decided to head to Idaho Falls to get some fabric for a photo shoot she has tomorrow. I had a doctor's appointment and a couple of houses to clean.

At about 12:30, I got a frantic call from her that something was happening to her head.  Her eyes weren't tracking, she was foggy and said she felt like she was going to have a seizure.  I suggested that she grab a candy bar and see if getting some sugar in her system would help.  She has a history of low sugar that can make her feel weak and shaky.  I wasn't sure this was the problem but I didn't know what else to tell her.

About 15 minutes later, she called back and had lost vision in her right eye.  Still having a hard time tracking with her eyes, she had pain and tingling in her right arm and couldn't make sense of words.  She could see them but couldn't figure out what they said.  I was prett…

The taste of sadness

"She refused to taste sadness, even when that was the only thing she had left to eat." i.k.

What a beautiful string of words!

Today, I promised to write a post about someone else's life...because I'm sick of mine.

Yesterday, just as it has been for the past four days, was hard.  I'm just caught up in this very strange and useless place of feeling too much or nothing at all.

So...last night, in an effort to get it together for this week of Thanksgiving, we rallied.  It really should be a week we realize and express gratitude for our rich blessings.  There is always something to be thankful for.

Sam and I put together some blessing bags of treats for my visiting teaching sisters and some of the people in my life going through difficult things.  Shelbie is still pretty sick but there's nothing like a little fresh air to help the spirit so we packed her in the car too.

I could feel the sting of this month subside as Sam and I visited with my friend whose husb…


Anymore, my life is ridiculous.

I am a big fan of the concept of 'owning your story'...  until, you realize your story isn't even believable by yourself, let alone anybody else.

Anymore, I don't want to own my story.

Anymore, I wish I had a different story to tell.

I think tomorrow, I will tell a story from someone else's life or some made up life.  Maybe I will tell the story of what tomorrow was suppose to look like when I thought about tomorrow, back when I was all of 6 years old or something.

Today's story is about another trip to the hospital.  This time at 4:something AM.

 I don't even sleep anymore.  I just lay in bed like normal people do, so I look like I'm sleeping, but really I'm just waiting for someone to have an emergency that needs immediate attention.  It's working out pretty well.  It's much better than being woken from a dead sleep and having adrenaline  shock your heart into an arrhythmia that lasts until the next emerge…


Some days,  it feels like I have been waiting my whole life for things to work out.  Just one little thing to work out or be easy; easier than it has been.  But, it has never been easy and it never gets better.  Instead...I learn to settle.

 Last Christmas, they found a hole in Samuel's heart.  The pressure in his lungs was incredibly, abnormally high.  I fretted and cried for days about a hole in his heart.  As the testing went on, it became clear that maybe the hole wasn't the biggest problem. I begged and pleaded for the hole in the heart.  I would have given anything for the hole in the heart to be the biggest problem. There were bigger problems like multiple holes in his lungs.   Living with the thought of my son having holes in his lungs was nearly more than I could bear. Back then, I couldn't imagine how we would ever get through it.  I didn't imagine that I would even have the rest of the year with him. Here we are, a full year later.  But, it will never, ever…

All on a Wednesday

Today was a day I wasn't expecting.

A little back story...last night, as we had family prayer, I expressed gratitude for Sam's good health the past few months.  When I was done Sam said, "MOM!  I thought you loved me!  Why did you have mention how good I have been?  You just jinxed me!"

"No I didn't Sam.  You are going to be fine."
Well this morning...not fine.

He woke up with a mouthful of sores.  It happens when his white count/neutrophils tank.  I'm guessing his white count is probably close to 1.  Maybe 1.5.  Low.  I numbed him up and sent him to school.

I had a busy morning with a big conference call for a hospital design project I am doing in Star Valley Wyoming.  I was suppose to be there but with everything going on, it just wasn't possible so they graciously allowed me to conference call them.

While I was on that call, Sam kept trying to call me.  He called about three times and sent a few text messages.  I had a very hard time trying…

The Stages of Grief

I'm not sure who to give credit to on this little diagram but I believe, they should receive some Nobel Peace Prize or something of that nature!  This is shear genius!  Finally, someone actually came up with a picture to illustrate most of what is happening in my head on any given day!  
    This diagram should be taught in every Institution offering any medical related class.  It should be hung, larger than life from the rafters.  No one should be able to practice medicine until they understand this concept.        If doctors understood how the stages of grief really work...they wouldn't have to medicate patients until they can no longer feel their toes.  They would see that their bipolar, extreme thought patterns, racing mind, disconnected thoughts, word finding problems, are completely normal under the circumstances and are natural brain patterns for chronic caregivers...or caregivers for the chronic...either way works.
    This diagram also saves me a whole lot of time an…

A little Heaven in our home

I don't usually post twice in one day but I can't let this day slip by without recognizing the little things that brought Heaven a little closer to home today.

It's been an emotional day.  On my way to church, I heard a Christmas song and again, I was filled with gratitude for my Savior; His birth and His death.  The thoughts dangled on my heart and flooded my mind with all the ways in which we have been blessed.   I remembered that the Holidays are upon us and have always been the hardest two months of my life because of the overwhelm I feel daily for our blessings, the gratitude that we have been carried another year...  Another day I have been gifted to be with my kids.

The tears really ramped up when a sister I admire, and look to when my mind gets carried away with all the what ifs and maybes that come with an advancing disease, came to put her arm around me before Sacrament meeting started.  She lost her own precious son to Cystic Fibrosis.  She listens to the cha…

It's not what you think it is...

This has, without a doubt, been a difficult three weeks. There have been days, I couldn't say for certainty that Spencer would make it even another 24 hours.  Truth be told, it's been a difficult 23 years of disease with my three most precious blessings to whom I cling to for dear life.  It seems that the obvious problem here has everything to do with a broken immune system, failing bone marrow, shortened telomeres and aggressive bacteria that mows down whatever was left in a struggling GI tract.

But is it that obvious?  Is this really the biggest problem we face?

I wonder.

Today, I see a different picture as this coming week casts a dark shadow on this Sabbath Day...the Day I always look forward to.  The day I renew my strength and faith for the coming week and unseen events that will surely come.

Today, I have given thought to the children of Israel.  To Noah.  To Nephi.  To the Brother of Jared.  To all those who found themselves in a desert.  Lost.  Dark looming clouds.  D…

Plans for a Saturday

Today has been a pretty good day in terms of...everything I guess.

I was able to make it to the temple for my shift this morning.  It was a beautiful November day here and the sky was the deepest blue with just a dusting of powdery clouds.  I had to stop and take a filters on this!

It was a welcomed change of pace to sit on the organ bench for an hour and play quiet, peaceful hymns.  At one point, it was almost too meditative for this tired girl!  When I'm in the temple, there doesn't seem to be a care in the world.

I've been using my year's worth of studying about gut health to try to get Spencer some relief.  I know that if we can increase his alkalinity and stomach acid, we can restore some good healthy flora to aid his faulty immune system.  Lucky for me, I discovered that Spencer has this love for Mint Limeade from Cafe Rio.  It's the perfect drink for him.  The limes, though they seem acidic, actually increase the alkalinity in your gut once th…

Remember the past

Today, I have been remembering some of our past experiences.  It has made for a much better day.

I remember the day I got divorced over 10 years ago.  I know what you are can remembering a divorce make for a better day?  Well, here we go.

I was trying to find a place for the kids and I to move to and a full time job.  Nothing was working out.  As I drove around looking at rentals and cheap places to buy, this song came on the radio.

God moves in a mysterious way
His wonders to perform;
He plants His footsteps in the sea
And rides upon the storm.Ye fearful saints, fresh courage take;
The clouds ye so much dread
Are big with mercy and shall break
In blessings on your head.His purposes will ripen fast,
Unfolding every hour;
The bud may have a bitter taste,
But sweet will be the flow’r.Blind unbelief is sure to err
And scan His work in vain;
God is His own interpreter,
And He will make it plain After I heard this, I started watching closer for God's plan to unfold in my life.  I sa…

Rough Day

Man, what a rotten day!

It's just heartbreaking to see this boy of mine so sick.  I just wish we could see one little glimpse of improvement in anything.

Spencer has been pretty depleted all day.  We met with the Infectious Disease Doc.  He was a nice guy, a total disease geek.  He seems to be energized by talking about infectious disease.  I like a doc that is totally into his work.

He said that by day 4 of antibiotics, people with Salmonella or C-diff should be completely back to normal health.  The fact that Spencer is as sick as he was on day one, if not sicker is not good news. They decided to retest for Salmonella and C-diff again.  Hopefully we will know by tomorrow if the bacteria are still active.  He is bleeding again only this time higher up in his gut because the blood is black which means it has passed through his Intestinal tract and mixed with digestive juices.

Tonight he is in a lot of pain.  Really uncomfortable.  His heart rate is pretty fast and he can barely…

Fresh out of funny

I promised something funny today but I'm fresh out of funny.   It started out to be a pretty good day.  Here is a conversation I had with Spencer at about 1:00pm.

"Mom, you won't believe this but I have the most amazing feeling in my stomach!"
"Really?  You're finally feeling better?"
"Like, it's nothing I have ever felt before! It's amazing.  You know when your stomach just feels amazing?"
"No, I only notice my stomach when it doesn't feel amazing.  Are you messing with me?  Do you really feel amazing or not?"
"Ha!  I am in the worst pain ever.  I feel like there is a little army of men in my stomach with swords and knives.  I am in amazing pain!"

He says all this with a smirk and grin on his face.  I never know with this kid!  Shortly after that, or sometime this afternoon, the bleeding started back up.   I'm guessing it had something to do with the amazing feelings he was having.

My quest to fee…

The Messy Middle

One of my favorite authors is Brene Brown.  I love everything she has to say and the way she says it.  She is an amazing wordsmith too! (I guess that was redundant...)  I follow her on Instagram and last night, this was her post...

"Act II:  The middle space.  The part of the story where the main character is lost and struggling.  She tries to find the way forward by taking every path except the ones that require vulnerability.  The struggle continues until she finally realizes that the only way home is through vulnerability.  Into the dark.  I hate Act II.  I love Act II.  The middle is messy.  But, it's where the magic happens.  We live in the rumble." Brene Brown

We are definitely in the messy middle.  I think a week of only getting an hour of sleep here and an hour there caught up to me last night.  I kind of struggled in a big way and I ended up with a fever and felt horrible.  I had to work and then came home and fell into a chair and watched Spencer and Shelbie tr…


Finally, we have a care plan!
Finally, for the first time in three weeks, I feel supported by someone with a medical degree that didn't come from WebMD.

This morning, we met with our PA provider Andy B.  He works in the tiniest town but I really like him.  He is one of the few that hangs in there with us and actually communicates.  I really appreciate it when he tells me he has no clue what to do.  At least he is honest and humble and then we can bounce ideas off each other, I share my research, he adds his knowledge and we actually get somewhere.

Andy made contact with infectious disease docs in Idaho Falls and we will be visiting with them.  They are the experts in these food borne toxins.  He is also conferencing with a new Hematology group in a city a little over an hour from here and if they accept us, we will have our new Oncologists on board.  So, I felt hopeful after leaving Andy this morning.

Then, I  finally heard from our GI doc and that was a relief too!  He was prett…

Stuck..and other news

Sometimes, I feel like we are stuck.  Sometimes, I can't imagine that anything is ever going to be different than it is today.  Sometimes, I think I have forgotten what life use to be like...before the hastening of trials began.  Sometimes, I'm afraid to think of what is coming next. Sometimes, I just feel like we are stuck.

In Salmonella news...I think I can say that Spencer is better in some ways!  That's a direct result of prayer.  I keep hearing that Infectious Disease Docs voice in my head..."brace for the worst"  This hasn't felt like the worst thing we've been through.  I can't help but know that this is a direct result of prayer.  We've had episodes of strep throat much harder than this...well, maybe not exactly.

Today was the first day in 8 days that there hasn't been any blood escaping from his body!  That's pretty much the extent of the good news.  But that is great!  Everything else is pretty much the same.  He is still having …

Remember When...

Remember yesterday when my motto was "Perplexed but not despaired"?

Funny comes at you fast sometimes and can really catch you off guard!

This morning, I am feeling very much like a hypocrite!  Ha ha...Funny.  Not funny.

I guess because last night, Shelbie had some symptoms crop up that has me worried we are headed down a similar track with her.

Today, it became extremely clear that we have absolutely no plan for how to move forward.  We had no follow up instructions so we are just hanging out to dry.  We just jumped out of an airplane at 10,000 feet and totally forgot to pack our parachute.  I hate it when we do that!

In other words, we have no doctor.  Our Hematologist in Seattle moved to Boston and she isn't open for business yet but even still, what can she possibly do a million miles away?  We didn't get established with the new Seattle doc but in my lovely insurance letter, Seattle is now out of network anyways.  We have a family doc …

Spiritual Confidence

Here's something funny...

Tonight, I opened a weeks worth of mail and guess what?  There was a letter from my insurance company saying that they are raising my rates by $150 or something crazy. is the irony.  Starting in 2016, if you have to go to an emergency room out of network and need to be admitted, they will cover it as if the facility was in network!!!

God works in mysterious ways!

I am still a little miffed about our whole experience here at home.  I have been praying to try to understand why Heavenly Father would direct us back here only to discover that we had absolutely no medical support.  It's been completely bizarre and has made no sense at all.

I was thinking about the message I received a few days ago about praying for wisdom and understanding.  I thought about the quote I saw in the elevator the day I went to get Spencer, about wisdom, "Wisdom is the power to judge rightly, following the soundest course of action based on knowledge, experienc…