Friday, September 29, 2017

In the quiet

It's a Friday night and September is closing up shop and so am I least for the night.

I've had a busy day with three new client meetings and some serious deadlines looming for Monday.

The kids are all in Utah...all doing their own things.  They left yesterday so it's been super quiet around here.  I'm not at all use to being home alone with only myself to take care of.  It's a little foreign to me and not something I excel at.  My life has always revolved around the people I love, making sure they are happy and comfortable.  It isn't all bad, being alone, but there is something about having people to belong to, the warmth of another soul milling around to help you feel connected to something.  Someone.  It makes me wonder what will become of me when the kids have moved along in life and there is no one left to care for.  I try not to let those thoughts chase me for too long. 

In all of the quiet, I have been able to get a lot of work done.  I need to clear out some of these projects that are so close to completion so I can make room for the new ones.  In fact, I've had a three page 'To-Do list' I made on September 18th and I've whittled it down to just one page!  Finally!

But...the house is quiet.  Just the light at my desk illuminates the darkness, my favorite Claire De Lune  by Debussey plays softly.  I'm going to call it a night, maybe settle in with the books that sit on my nightstand, neglected; with words begging to be found.  As I sit here, putting this month to bed and preparing for the next, I wonder how we ever keep doing this.  I think about all the wishes I still have and hopes that almost feel like a distant fantasy that will only ever exist in my mind. I wonder if this is all I am meant to accomplish in life- working to keep up to the demands of this broken world.  Wondering if there is anything better I could be doing, should be doing...want to be doing.

And then I think...maybe in the quiet isn't the best place for me.  Maybe it's the chaos that propels me forward, these shadows in tow.

Thursday, September 28, 2017


Before I get to this post, a quick update on how our world is spinning, recklessly, out of control. 

Just kidding...

It actually feels like I have a chance to breathe a little.  Things are calming way down, as they always do, eventually. 

Shelbie is doing pretty good.  It has become evident that she has started reacting to her transfusions every week so that leaves us in a bind.  These are life preserving treatments for her and facing the possibility of an ER visit every week is daunting so in my spare time, I'm going to try to figure out how we can avoid or prevent it.  If we can't come to an acceptable solution then I think it makes sense to go back to doing the big, massive infusion once a month in the hospital.  When we did that, she was sick and in the hospital for one week of the month, not weekly.  We'll see.  This weekend, she is excited to see her favorite country band, Florida Georgia Line in Salt Lake, a gift I gave her for her birthday.  Her best friend is flying in from California to go with her.  She will hang out with Spencer and enjoy some fun she has not been able to have this year.

Sam's heart is still not in rhythm.  It's so discouraging.  Again, taking the pacemaker out is not an option but this was not something we expected.  His heart is rarely that beautiful 60 bpm I assumed he would always have.  He can be sitting at the dinner table and his heart just takes off to beats over 150.  They keep saying we need to be patient.  I have some thoughts on being patient with heart problems but I'll save that for another time.  Mentally, he is doing really well.  He has come to a better place of acceptance with all this.  He has almost finished the wall he started painting in his room...I'll post pictures when it's done.

Spencer is doing better too!  Not great but he's keeping some basic foods down- rice and toast.  I have him on a low histamine diet.  He is still taking the H1, H2 histamine blockers and an assortment of other vitamins and minerals to at least improve his crippled gut.  He Snapchats Sam and Shelbie and from that, I can tell, he is less gray, a little more color in his face but he is sadly malnourished.  I feel grateful for the way I was inspired on the weekend.  It seems to have stabilized the situation.  One of my chronic mom friends did a little research on histamine and mast cells and offered some good articles for me to read.  They cited that some heart medications can exacerbate the situation and sure enough, his heart meds were listed as bad for the gut.  Again...we can't just opt out of the medications to keep his heart going so it's a dilemma.   Spencer has been really busy with three amazing video production jobs that will soon be going National! I'm so proud of him. 


When I'm sitting at my desk all day, I listen to podcasts, TED talks and whatever else I can find as sources of light and inspiration.  I listened to a good one yesterday by Amit Sood.  Here is his recipe for getting the day off to a great start.

      Before your feet ever hit the ground...

      5- Name 5 people you are grateful for and send them a silent gratitude.  In this moment, include your 8 year old self and think of someone who has passed away who you loved.  Consider how blessed you are because of these 5 people.

     3- In the first three minutes you spend with your kids, your spouse, your friend, your co-workers do not do or say anything that attempts to change them.  Just love them. Listen to them.  Belong to them.  I love, love, love this!!

     2- When you encounter a stranger, for 2 seconds before you even open your mouth to speak, wish them well.  Consider them to be one of God's choicest spirits.  They too are on a journey and not all journeys are smooth these days, for anyone!

I love these ideas.

It's so easy to feel lonely in the midst of trials that never seem to end.  People seem to steer clear of you in chronic situations.  It's easy to feel sad and bitter when you end up on the fringes but this helps to change that perspective.


Tuesday, September 26, 2017

Thinking out loud

Let's talk about something other than disease and dis-ease...

Sometimes, I think out loud when I should really keep my thoughts to myself.  Especially at work.

I'm working on 4 major healthcare projects right now, from Architecture to the final touches.  They are spread out between 4 different cities and all a different specialty so it's been a great challenge for me.   One of the projects is for an orthodontist.  He is a pretty amazing doctor.  He will have a frozen yogurt bar in the waiting room, massage chairs for the moms and dads, indoor playground, iPad bar, and the list goes on.  The theme he wants is industrial/aged look with a strong theme of 'adventuring'. Empowering kids to think beyond the box.

As we were brainstorming, I mentioned that it would be cool to have old, antique doors suspended over the treatment chairs, with color changing LED lights flooding the space with the color of each patient's choice.  Well...he loved it.  The problem is, I had no clue how to pull that off!  As if that's going to stop a great idea so I went door hunting and found these beauties.

This afternoon, a guy from the construction company brought them to my house so I can clean them up and refinish them for the millwork company who will then add a heavy crown molding to frame each door.   This guy had a dog in the back seat of his truck.  The dog was strange looking and I wasn't sure what the breed was so I asked?

Again...I should have stayed out of his business.

Turns out it was a mix between a wrinkly Shar pei and a Pit Bull.  It had a wrinkly, cute-ish face.  The dog was hanging his head out the truck window and the guy kept saying, "Face in the truck!" of course the dog didn't really care what orders his master was barking at him.

 I said, "Is your dog friendly?"
"No.  If you get close to him, he'll tear your face off. I'm not joking."
"Oh!  Wow, what a nice dog."  I didn't really  know what else to say and I realized afterwards that that wasn't the right thing to say at all because that is not nice!  I didn't say it sarcastically which is hard to imagine, I know!  These days, I just don't always get my emotions right the first time!

Then...the guy says, "Here, I'll let him out."
"NO! I mean,'s fine. (Trying to act calm but I'm not calm about dogs that want to use my face as a chew toy.) He looks pretty happy right where he is."  Not that my face is such a great asset, let's be honest, I'm still single... but I'm really attached to it and I kept thinking about the millions of dollars I have spent at the dentist this past decade, so I didn't want that hard work wasted!  The guy totally disregarded what I said!  So, now there's a wrinkly pit bull running crazy on my driveway and I'm not sure if I should pet him or cover my face.  I'm quite certain Pit Bulls can smell fear and I'm not sure about Shar pei's. Inside my head, I wanted to lay on the driveway in the fetal position rocking back and forth screaming for help.

Thankfully, I didn't have to resort to this behavior.

I was so glad when that moment ended peacefully.  My little 'pit bull' was taking a nap so he couldn't even protect me!  But if he was outside with me...that Pit Bull would have wished he had kept his face in the truck!

People are crazy and I should not think out loud because this weekend, I have to figure out how to make these doors look cool!


Monday, September 25, 2017

What I Know For Sure

This post is about what I know for sure!

  • Life is hard and getting harder.  I have I mentioned this before?  Only about a million times I think. 
  • Lupus is horrible and so is Ankylosing Spondylitis.  I'm not getting a handle on things and today has been a miserable day while I tried my hardest to work and appear like I'm enjoying a pain free life.  By noon today, I couldn't feel my right arm and I couldn't move my left wrist.   I weaseled my way onto a booked schedule for a massage.  The girl said, "I can't believe you are moving. Do you have a stressful job?"  ha ha..."Yes and Yes."  All of it...enough said.  I don't usually cry over pain but it's getting unmanageable. She was able to get the blood circulating back into my arm so it's slightly better.

  • I have officially reached the stage in life when I can do nothing but have faith and pray, this I know for sure.  I have prayed continually over Spencer.  Still no word from our GI but the over the counter medications I was inspired to tell him to take seem to helping him get a little bit of relief.  He has been taking an H1 and H2 histamine blocker, a probiotic that my friend with Crohn's suggested he try (it costs about a half a million dollars), Omega 3, B6, Vitamin C and L-Glutamine.   My theory is that he is full of inflammation and an increase in mast cells.  I learned that people with faulty autonomic nervous systems can also have a syndrome called MCAS  (high mast cells).   I know that lack of stomach acid, inflammation and abnormally high mast cells can cause that severe of food intolerance so that's what we are fighting.  The only food he can keep down are Pixie Sticks...straight up sugar.  It's probably far more serious than what I'm guessing but until the doctor calls back, this is all I know how to do.  He said he feels it is starting to help a little.  Here's praying.  Today and Yesterday, he kept white rice and toast down. I worry about the health of his pancreas...
  • I know for sure that it takes no effort whatsoever to go from confidence and faith to shear and total fear.  It's so easy.  There is probably nothing easier in life than jumping to conclusions and panic.  How fun!
  • I have a friend who isn't a member of my same faith but we have the best visits and conversations about spiritual things.   He often inquires about a doctrine of the church and says, "Teach me about this." Last week, he asked me to talk to him about my thoughts on agency.  This morning, in my continued studying about agency, I came across this thought..."We need the mortal experience here.  It is in the affliction that we are chosen."  "God does not spare us the conflicts but he consoles us in them." Todd Christofferson.   I know this to be true.  I also know we are having such an amazing mortal experience!!  (This is only to be read with a little bit of sarcasm.)  Honestly though, this was a good reminder today that all the struggle, if we struggle well, will be worth something in the end.  Sometimes, all you need is a little change in perspective. 
We are weak and tired and just muddling through but we will continue to hold tight to the belief that this is all for our experience Here to receive more There and this is what I know for sure. 


Saturday, September 23, 2017

Autonomic Testing

I'm pretty happy that I can see the end of this week close...not that next week is going to be any better but changing the irritations is as good as a rest...or so they say, or maybe that's what I say.

Yeah, that's what I say.  Sometimes, you just need a change in the view of all the current hard things in lieu of new hard things.  Sadly, that's what has become of my life.

That was a horrible way to start this post when in reality, Shelbie's testing ended up being wayyyy better than I had geared up for and the great thing is, no one died yesterday!  So, really, that makes for a really great day.

Instead of leaving Thursday night as I originally planned, we left at 4 am on Friday which means I was up at 3:00 am but technically was awake at 1:45 am so that made for a long drive and a longer day of stressful things.  I was happy to make the sacrifice to save on more hotel and food costs.

It poured rain all the way there.  I was so grateful for my car.  It handled the drowned highway so much better than my old car.  The AWD made all the difference.  We did so much hydroplaning, it was scary at times.  It is so dark in those couple of hours before dawn and with the pounding rain and dark asphalt, I couldn't see the huge puddles we forged our way through.

Even as we neared Salt Lake, the sun was buried under the thick fog and clouds that had fallen in the creases of the mountains.

They got us right in for testing.  Shelbie had to be indoors for 30 minutes prior to the test.  Her testing included three parts.   Below is a picture of the dreaded tilt table I have grown to hate.

 The first test, they roughed up her wrist and foot with sandpaper and then went over the raw parts with saline and then injected more saline and added an electrical current.  It was pretty painful and uncomfortable for her.  She had to lay like this for about 20 minutes if I remember right.  She had to be completely still and quiet.  They got everything started and then dimmed the lights and put on this Tibetan chanting/gong music that was irritating!!

 In between the saline sweat test and the tilt table test, there were some other breathing tests while she laid strapped down to the table.

When they announced it was time for the tilt table, Shelbie panicked.  I started to panic and really wanted to run and hide in the waiting room.  This was the part I just couldn't survive watching in light of Spencer's untimely death a year ago.

Tears streamed down her face and the technician said, "Are you okay? What's wrong?"
"My brother's heart stopped when he did the tilt table test.  If  my heart stops too, do you promise you'll bring me back?"  That was such an incredibly sad moment to see her face all full of fear.  Real fear.  It was a horrible moment for a mom to witness.

The poor guy looked shocked and scared and worried and sad all at the same time.  Gently he said, "I'm not going to let you die.  That was a fluke thing.  That doesn't happen on tilt table tests besides, it's the weekend and having to chart someone's death takes too much time and I'm not into that today."  and then he winked at her.  As it turned out, our doctor had previously reviewed what happened to Spencer and so she altered the test some and Shelbie only had to do it for 10 minutes and they didn't administer all the other medications.  She did have some difficulties with the test even at just 10 minutes but it was way better than Spencer's test.

 Before the testing started, the tech said, "So, your insurance company refused to pay for these tests today.  Were you aware of that?"
"What?!! No!! Then, we can't do this!  I have no means to pay for this. I'm sorry."
"Wait, your doctor feels so strongly that these tests are critical for her to get the full neurological picture of what is happening in her brain, she arranged for the hospital to completely waive the bill.  The hospital will write it all off."

Are you kidding me?  That never happens!  A hospital just absorbing the cost... because? It was truly an act of God.  A tender mercy.  A miracle!!

When we were through a few hours later, we made a quick trip to Provo to take Spencer out for lunch.  He has been so sick the past two weeks.  Sooooo sick.  He looks so terrible, I changed this picture of us to black and white because he is in rough shape.  His cheeks are sunken and he can't keep any food in his system.  I have spent all morning trying to get a hold of our GI doctor in hopes they will put him in the hospital for the day for some TPN- venous feedings.  It's a long shot that I will even hear back til Monday.  I've been madly researching what could possibly be going on and I have made a hundred calls to him with a plan to calm things down...maybe.

I feel like it's either a telomere thing, mito thing or even an issue with mast cells getting out of control.   I don't know.  I may be making another trip to Utah in the next few hours. It's been an upsetting morning.

It's just another frustrating setback.  He's signed a year contract on his apartment, started a brand new job and now never fails.  The poor kid tries so hard to get ahead in life.  He is constantly met with struggle and his health.  I feel so sad for him.  He works so hard to see his dreams manifested.

I came home kind of sick with my Lupus nonsense and today has been worse for me too.  I've tried to find someone to cover my organ playing at church and the temple but that is impossible.  That's why I have a love/hate relationship with this calling.  It's all great when I'm there but when I have to take care of me or my family, there are no options.  Today, even breathing hurts.  It feels like I have broken ribs.  My inflammation is through the roof.  I hate feeling trapped.  It's not like everyone and their dog plays the organ.  I shouldn't complain because we have been blessed this week in many ways.  Just tired I guess.


Wednesday, September 20, 2017

The Drunken Duck

Man! What a day! It started out with my run in with a drunken duck.

Driving down the highway, minding my own business, cruising at about 80 mph and a duck just decides to come in for a landing and sit dead center in my lane of traffic! He seemed drunk on pond scum and sweet bread crumbs.  He was completely disoriented as to where he had just landed. He must have thought he had just landed in a some asphalt duck sanctuary.

Oh man, what a dilemma.  I had a semi on one side of me, the ditch on the other and a confused, sitting duck in front of me.  He had a chance at life if he had of stayed sitting but instead, he decided to stand up at the last minute and stretch his neck, just as my bumper kissed his beak.  It was a disturbing moment.  I'm afraid my car will be choking out feathers for the next few days. Sheesh... I had one nerve left.

Anyways, we arrived safely and just in time for Sam's appointment.  They confirmed that Sam is experiencing an abnormal rhythm since surgery.  They aren't sure at this point what is happening.  They downloaded the last week from his pacemaker and it is functioning normally, the wires are settling in nicely and scarring into his heart.  They removed his stitches and everything looks good that way but his heart rate is a bit of a mess.  They made some adjustments to his pacing and we will wait and see what happens next.  The nurse agreed that maybe it's just his body trying to adjust to this new pace, maybe his nervous system not taking kindly to things...It could be the other issues with heart that are now more prominent.

Downloading the pacemaker

My Happy Camper while he gets his pacemaker 'interrogated'

Who knows?  The bottom line is, we have to continue to have faith that things will work out and either things will resolve or they will figure out what the exact problem is.  It's a little frustrating but getting upset won't do much at this point.  Sam is just happy he gets to shower tomorrow and he only has to keep his arm restrained to his body at night when he sleeps and at work.

We didn't get out of the hospital until 5:30 and since we hadn't eaten all day, we stopped for pizza at our favorite downtown place, Maxwell's.  We got there just as a live jazz band was performing.  It was Heavenly to sink down in the booth and numb out to the smooth sounds of a the sax.  Beside us was an elderly man who had escaped the nursing home...just kidding.  He did have a name tag on that claimed him to a nursing home but he was enjoying some pizza and jazz.

My new friend the Music Man

I have this way with elderly men who have no teeth.  I'm not sure what it is, but he struck up a conversation.  He was an interesting guy; a classical pianist and also played the organ and trombone. People call him the Music Man.  He kept doing donuts with his scooter between our tables.  It was some awesome comic relief.  I was telling him that I played the piano, organ, flute and one summer of the saxophone.  I had him at 'organ'...ha ha.

He said,  "Do you play the organ at church?"
"Yes."  I replied.
"What are you? Protestant, Catholic, LDS?" He asked.
"Ya know what?  I was born Protestant and stayed that way for 33 years until the Mormons got me with their truth and I've been a Mormon ever since!"  And then he picked up his frosty mug of BEER and said, "Cheers!"  Ha ha...I needed a good laugh.   Nice guy.

Well, what a longish day but never a dull moment.  I'm still traumatized about that darn duck!


Tuesday, September 19, 2017


In my scripture study this morning, I was struck by the word Steadiness.  

That word has so many meanings as I thought about it more...


  • Stable
  • Even
  • Constant
  • Resolute
  • Unwavering
  • Undeviating
Wouldn't life be so much better if we could master the art of steadiness?  

It's a word that I can relate to this week. Those steady, 60 bpm I loved last week have not been seen again in Sam.  His heartbeat is all over the place and continues to get higher and higher with the least amount of exertion.  We are seeing up to 160 bpm now in just a slow walk from the living room to the kitchen and in my shoe box of a house, that's about 10 steps.  

I like to imagine myself never wavering in my thoughts and actions, especially when the kids get sick, when we prepare for more hard things, when we face things I can't imagine ever recovering from.   It's almost a distant dream to ever think that I could face a trial and be steady, stable, constant, resolute, unwavering and undeviating from knowing that my Father in Heaven will take care of it all, no matter what, regardless of the outcome.  He proves Himself to be steady and unwavering time and time again; I've learned this over the last half a century.  Yet, I have not quite settled in this steady space.  I continually doubt, question and waver. 

Today, I had to go through the checklist for Shelbie's testing on Friday.  I completely forgot, from 6 months ago when our Neurology team set up the appointment, that she has go off all of her medications this week.  That is going to be a problem.  A few of them make her so sick if she misses a dose.  They are aware of this but it's the way it has to be.  When anything gets off with her system, she ends up with more seizures and more sickness that will take us another month to recover from.

Again, I never realized until this year, just how important it is to keep the kids' in optimum health, any deviation creates an unstable situation.

I think the weight of this word today was meant to be.  I am dreading Friday even more than I dreaded the pacemaker.   I already have a bad feeling that the complexity and difficulty of this test that Shelbie has to go through could send her into seizures or stop her heart altogether, just like it did to Spencer last October.  I am having some serious PTSD over this but my goal is to be steady, in all things.  (Note to self...when they ask me to wait in the waiting room, I'm going to stay put this time, instead of insisting I go in to watch.  That was a big mistake and had I known Spencer was literally going to die in front of me, I would have chosen not to watch that.  Oh well, live and learn. )

I know, it's a big jump for me to be steady as opposed to wavering from one minute to the next but I'm going to give it the ol' college try!  What do I have to lose?


Monday, September 18, 2017

It's hard to be normal

It's hard to believe that Sam is one week post surgery.  Today, he went back to work but with limited activity and by limited I mean, all he can do is walk around, nothing else.  He gets to shower on Thursday so he is looking forward to that.

I feel like I'm walking around in a fog.  I mostly feel numb after an emotional weekend.  Spencer has been sick since Saturday and that has been frustrating.  Despite the busy, tiring, emotional weekend, I have been able to solidify a few thoughts.

We were very ill-prepared for this life changing event.  We accepted it, I did minimal research and we just powered through, never stopping to consider the difficulties that we face now.  I see that more and more as I witness the response people have to Sam when they see him.

On Saturday, when we were at Walmart, we stood at the front of the store waiting for a friend we had taken with us.  We ran into my cousin who got a pacemaker about 3 years ago.  I asked him how he managed right after and he manages now.  I asked how low is heart rate was before getting a pacemaker and how high it is now.   He said it changed his life.  He felt almost immediately better...he is 85 years old.

After he left, I said, "See Sam, there's hope.  Things will get better."
"Do you know how that makes me feel when you ask 85 year old men how they feel with a pacemaker and think I should feel the same way?"

Nope...that hadn't really occurred to me but I was glad he pointed that out.  It's true, there's a big difference between a 19 year old and an 85 year old.

I wasn't really saying the right thing on Saturday because then I said, "I bet you didn't realize that normal could be so hard."  Meaning...having a normal heart rate has been a challenge but his response was...quite loud!

"What is normal about this?  I'm not normal.  I will never be normal.  Name one other 19 year old you know walking around with a computerized heart!"

I was actually so happy to hear him put actual words to his thoughts.  I almost started cheering but instead I just kept at him til he got a lot of frustration out.  Since Saturday, he's been doing better emotionally but man, his heart is doing weird stuff and I don't get it.

He is still experiencing skipped beats.  He literally takes 15 steps and his heart is racing at 150 bpm...that number just keeps rising each day.  Nothing is really getting better in fact, he would say he feels worse than ever.

All of my kids have a condition called Dysautonomia.  The autonomic system is faulty in them and that plays a part in regulating a heart rhythm.  They also have some clinical symptoms of mitochondrial disease so I'm worried that these issues are relating to their nervous system freaking out with doubled heart rate and the fact they already have energy issues in the cells of their muscles.  I don't really know...just hypothesizing at this point.

We head back to Utah on Wednesday to get stitches out and wound care and I'm hoping they will talk us through what is happening but I have a feeling we will only see a nurse this time.  We will come home late that night and turn around Thursday to get Shelbie down for her little stay the rest of the week...It's a long story why we can't stay down there but on the bright side, I will save money on hotel fees!

We are trying so hard to just be normal about this.  To not let it disrupt our lives too much but it's honestly hard.  There are times I wonder if we did the right thing.  I guess that question only leads to dead ends at this point.  I know we would have watched his heart completely die so we really had no choice but still...I wonder.  I think maybe the hardest thing is just knowing that this is never coming out of his chest for as long as he lives.  From here on out, he relies on a computer to keep him going.

I know there are so many more feelings yet to surface from both of us.  As soon as I feel things coming up, I'm quick to shut it down.  I'm just not ready for a meltdown yet.


Sunday, September 17, 2017

The Heart of a Mother

I hit the ground running when I got home from Salt Lake.  I had back to back meetings from Thursday night until Friday afternoon.  Sandwiched in between appointments, I said goodbye to Spencer for his official move to Utah.

At noon, I ran through the front door and he was standing there, anxiously patient for me to arrive so he could take off.

Without a breath, I ran through the rapid fire questions.

"Spence, did you pack your medications?"
"Did you get the comforter?"
"Did you grab your 72 hour kit and 1 month food storage bin?"

"Yeah, I got everything.  It's all there.  I gotta go." was his reply.

What kind of a mom would I be if I just waved him off with a simple goodbye? Certainly not a smother mother, the kind he has come to love and adore!

"Okay but first...I need to tell you 4 things...Pay attention...

Spencer, stay away from the world.  You have no business being in the world, that's not where you belong.  Second, don't let your heart fail you.  Stay true to what you know and believe.  Truth is hard to find, don't fall for a shallow view of eternity. Third, never take credit for your success and learn from your failures.  When you are praised for a job well done, consider it a blessing and give thanks.  Always give thanks's the law of abundance. When things fall flat, get up and consider what you can learn from the experience.  Failures are really just an opportunity to try something else. Don't worry about it. Fourth, do something nice for someone no matter what, every day.   There is always something you can do, do it."

With that, we said a prayer and he was gone.  The back seat was stuffed with this and that but buckled in safely beside him, was the dream he has kept alive all year long, through the shadows of a very tough year.

I'm proud of him.  I didn't always see his vision while being at home but I always believed in him.  He has taught himself a valuable skill.  Every day for over a year, my living room has been his classroom.  With determination, he sat there every day with a strict schedule and written goals of what he wanted to learn and he did that, never letting himself get distracted.

We miss him so much.  The heart of a mom is continually bursting open in love that is much bigger than any heart can contain.  With all that love comes a trophy of tears, that we shake high above our heads, a bittersweet celebration, proof that we loved; something to show for the hardest job we have done on earth.

Friday, September 15, 2017

Heart and Home

Sam and I made it home last night.  It was a long, quiet, upsetting ride but when we walked in the door, the kitchen was full of friends cheering for Sam!  It was the greatest thing ever!  It made all the difference to Sam and he felt so loved and watched over. It was Spencer and Shelbie's idea!

They made him this great poster.

They kept him busy all evening so I could go to work.  When I got home, his spirit was definitely lighter and he seemed okay so I went to bed.  At about 2 am, he woke me up and was not okay.  He is having some issues with post trauma I think.  He has not been able to sleep well all week long.

Today has been a little more of the same, just trying to adjust to our new life.  He is still having lots of breathing issues and he is still having palpitations.  He has been asking me to take his vitals every few hours because he is worried something is going wrong.  I gladly check it and each time it's dead on 60 with exception...

He is so winded.  Worse than before getting a pacemaker.  He can't get anywhere without being completely out of breath, even trying to get something from the lower cabinets in the kitchen.  We did a little test earlier today...I put the pulse ox on him and tested his oxygen and resting heart rate then he kept it one while he walked upstairs to his bedroom.  His heart rate shot up to 107 bpm.  He wasn't running or anything, just a slow walk that took less than 10 seconds.  His oxygen dipped from 98 to 92 and his heart rate didn't settle back down for several minutes.

Then, I did the very same thing.  My heart rate went from 68 to 81 and within 2 seconds, it was back down to 68. So, something is not right but maybe it's just his heart and autonomic nervous system trying to figure this new pace out.  There has to be some sort of adjustment period so I'm trying to be patient and let things heal before I get all excited about it.  I do worry that the pacemaker only fixed one issue, as we had discussed, it may not be covering all the other abnormalities.  I kind of cringed when I heard Sam say...I don't want this if I'm going to feel like this!

Last night, we got his monitor set up in his room.  He has a dedicated cell phone and a home base.  This connects to his pacemaker and information is relayed through the cell phone.  It took some patience getting that set up, it kept showing that something was wrong the pacemaker and I was trying to read instructions, while staying calm and that was tricky!  We finally got the green light and a steady beating heart so that was a relief.  We just have to remain confident that we have done all we can do and the rest is basically up to God.  I know that I will know or Sam will know when waiting and watching is not enough but for now, we are proceeding with caution and trying not to worry.
I got to read the owner's manual in the hospital.  I think this box should have come with a live human being to come home with me for back-up. 

As long as we have a small green light and a steady, white heart, Sam's alive.  Anything else and there's a problem.  He will be monitored everyday, all day for the rest of his life.  I know it shouldn't matter but the bill coming my way has me all freaked out! 

Easier said than done...

How am I...You ask?  This pretty much sums up my state of mind right now.

Like walking into the spider web of life...a little frazzled.   Seriously!

On Wednesday afternoon, as we started pulling out of my stall in the hospital parking garage, a moth flew out from somewhere on the driver's side and...well, let's just say it wasn't a pretty sight.  I freaked out!  You would have thought I was running from a terrorist.  I almost scraped along the concrete wall beside me as I forgot what I was doing- driving! I had a chunk of hair stuck in my mouth, my sweater was caught up on the back of seat, I bruised my arm trying to claw my way out the air conditioning vents... Sam just looked at me in unbelief.  When the moth finally left through Sam's open window, he just looked at me stone faced and said, "You alright?" and then rolled his eyes! Ha ha.  I just cleared my throat and proceeded as if nothing had happened, nonchalantly  putting my hair back in place.

Thursday morning I let him sleep until we had to check out.  I woke him up, helped him get dressed (He can't get his shirts on without help) and then I packed stuff down to the car and returned the room keys.  When I left the room, he was sitting on the bed, ready to go.  When I got back to the room, he didn't answer the door.  I knocked, then pounded, then called through the door.  It was the 'spider web' scenario all over again...I grabbed the nearest housekeeper and begged her to open the door for me.  I was trying to explain to her that my son had just had heart surgery and he wasn't answering the door.  She just kept nodding her head 'no'.  I kept saying 'YES!' , 'Please!  Something is wrong!  He was waiting for me to come right back.'  We clearly didn't speak the same language of panic.  She finally unlocked it but was clearly angry...I did interpret that correctly!

Sam was not in the room but the bathroom door was closed.  I pounded on the bathroom door, no answer so by now, I'm singing in my head..."Another one bites the dust...Another one bites the dust..." just getting into my rhythm for starting CPR and I'm covered in those darn 'spider webs', completely irrational! Now it's funny, then, it was not.  Turns out he was just using the bathroom.  I just couldn't hear him answering me, probably because Crazy Kat had made an appearance.

Anyways, I have a bunch of stories like this...just irrational, crazy stuff.  We are little on edge I guess. It's just a bit harder than I thought it was going to be but we're home for a few days til the fun winds up again next week.  


Wednesday, September 13, 2017

The Bulldozer

Last night, just after midnight, I sunk into the vinyl recliner that sat by the large window in Sam's 4th floor hospital room.  Sam had finally closed his eyes.  I put my head back and thought about maybe falling asleep but then a wave of anxiety hit and there was no way I was going to find my way behind the fallen lids of my eyes.

So...I slipped on my sandals and headed to the stairs.  I ran all the way down the stairs, to the lowest parking level at the hospital and then I turned around and ran all the way up to the highest level of the hospital.  I did that twice...just running as fast as I could, away from all the emotions that threatened to overtake me.

When I got back to Sam's room, I stood by the window that overlooked the valley and watched the airplanes lined up to land at the airport.  They hung in the sky like paper lanterns that had forgotten where they were going.  I thought that it was a perfect analogy for how I was feeling last night.

The natural thing to feel for any normal family is..."Whew, well, that's behind us." And that would be followed by a sigh of relief and something normal would ensue.  I almost dared to think that but just like those airplanes, I can see the next big thing lined up behind us, dangling at the end of my long shadow.  There is no sigh of relief, no moving on to normal, no break, no chance to regroup.  It feels so exhausting and overwhelming.  There is no time for me to sit and just be.  Like a bulldozer that slams into concrete pylons like a hot knife in butter, I keep plowing on; on to the next thing needing to be attended to.

It hit me again, when pharmacy came in to explain meds and then 10 minutes later when the tech from Boston Scientific came in to 'Interrogate' his device.  With Sam laying on his back, they turned his heart rate clear over 100 bpm and then back down to 50 and dialed it back to 60.  Sam felt his heart racing, being remotely controlled by a man sitting beside his bed at a computer and then it seemed so surreal.  This surely can't be real...and then a woman came to run through the list of all the things Sam can and can't do for the next week, the next 4 weeks, the next rest of his life.  In between all the people coming and going with more instructions, more appointments, more requirements for our new life with a pacemaker, we both fell asleep and it felt like I had slept a month's worth in just 10 minutes.

Sam was discharged early afternoon but we are staying at a hotel so he can get on top of the pain for one more day before we travel home.  We had to make a stop for some things we needed and the guys at the register saw that Sam's left arm is tied to his body.
They said, "Dude!  Did you break your wrist or something?"
"Ahh, no. I...ahh...well...I just had surgery and can't move my arm."
"No way! Surgery on your wrist?"
"Ahh, no.  I had a pacemaker implanted in my heart."

Both young men stood still with a slacken jaw.  "What? Dude! No way! *cuss word* Man!  How old are you?"   At this point, somewhere between the 'Dude' and the cuss word, I wanted to scream and cry.
Sam replied, "19.  I'm 19"
"Oh shoot man.  So sorry.  That sucks but I guess you get to live.  That's something."

This is why I hate leaving my house.  I never realize, from day to day how rough things are until we become this staggering story of unbelief.  It's really hard to find my way back to denial after days like today.  These are the things that stop my bulldozing methods in their tracks.

Anyways, it was just a hard day.  They were already talking about the next surgery when his battery needs to be replaced.  We have to come back next week for a device check, get the stitches out and wound care.   Sam has been having some bad issues with controlling his body temperature.  He spent all of the night, last night, in a major sweat.  The nurse was doing everything she could to cool him down.  We had the air conditioning in his room cranked, ice packs, cool facecloths and he was so uncomfortable.  Today, it's been extreme hot then really cold.  I'm wondering if his autonomic nervous system is a little shocked at the new, increased heart rate?  The doctor wasn't exactly sure what to think, it's not a typical side effect.

Sam has also been having a hard time getting deep breaths and is having heart palpitations.  I'm trying to take this in stride.  I'm trying to be patient and let him get a couple more days of recovery behind him before I get too anxious.  Tomorrow, we will get the receiver set up at home and then they will be monitoring his heart 24/7 for forever!  That's a long time. We've been told that his heart is going to be going through lots of changes and scarring the wires into the tissue of his heart so I'm sure strange things are to be expected.

He's been a little depressed and I hate to say it but...cranky today.  He has been snapping at me and really short on patience.  I know he has been through so much.  When we were eating dinner, I said, "Sam, you can't just not talk.  I want to know how you are feeling about things.  You need to process this."
"I have processed this." He said
"I don't believe you." I told him
"I just can't.  I don't want to do this."
"I know but this is not going away.  It's not like your heart is going to mend and they will take it out in 6 weeks and you'll be good as new.  Your heart is being kept alive by a computer, for the rest of your life...and before the end of the year is up or early next year, you will be receiving someone else's donated plasma to keep your immune system going too.  We have to talk about this."
"I know but I can't.  Not yet." He said

We have some rough days ahead.  He can't even shower for one more week.  He can't bend his legs, lift any weight or exert himself in any way for another week.  After that, he can shower but no swimming, soaking etc.  He can't use his left arm for 4 weeks.  At night, he has to have his arm tied to the side of his body or the side of the bed.


Tuesday, September 12, 2017

Keeping The Pace

What a longish day!
Prior to surgery

Off he goes

One of the bravest boys I know!  I couldn't do this knowing I would be awake! 

This is a picture of Sam's defective heart and where they were going to place both wires and where they would access the the two lower chamber and the junction in the middle where more issues reside

Post Op

Lucky number 60! More than doubling Sam's heart rate! 

One overwhelmed young man but better than ever.

A view from Sam's room.  

Everything with Sam's pace maker surgery has gone so well; such a tender mercy.  Our doctor has been so amazing and his Fellow was outstanding.  They spent so much time prior to surgery educating Sam on what is wrong with his heart.  They even drew pictures to help him understand the procedure.

When we first checked in, the nurse told me that Sam would in fact be under general anesthesia and I felt like a ton of worry had been lifted.  All along,we were told he would be awake.  That amazing feeling lasted all of 20 minutes until Anesthesia came in and said, "No, I don't feel comfortable putting him under with the condition of his lungs and liver." awake he was.  We came here just planning on a one lead, pace maker.  They determined that because of his Right bundle branch block they needed to place two wires in his heart.  One in the upper right atrium and one in the lower right atrium.  They also needed to access the lower parts of his heart so they decided to do a second procedure and enter the main artery in his groin.  That procedure was to get a better look at why his heart isn't initiating a beat and to get more precise measurements of each ventricle, left chamber, junction nodes etc.

I am so thankful that they didn't run into any complications with his Arterior Venous Malformations or lung problems. No excessive bleeding. His biggest risk at this point is infection.  He has no immunity left so they are running IV antibiotics tonight and tomorrow.  As soon as he gets healed from this, we will head back to Immunology and start on immune therapy to keep him in better health this winter...finger's crossed.

When they brought Sam back to the recovery room and hooked him back up to all his heart leads the monitor started beeping out a rhythm that sounded so beautiful and glorious!  A beat of 60.  Steady, solid 60 beats per minute!  I couldn't even speak!

 I just started crying. The doctor looked at me funny and I said, "It's such a steady, amazing number!  My new favorite number!"  He smiled and said, "Yes!  It is.  I guess that you have missed that."  I had never thought how much I have missed seeing that number on any of my kids.  It's the number of life!  It's the number that infused me with hope!

Sam has been on strict bed rest all afternoon.  He has had to have his arm restrained because he can't move it above his elbow for 4-8 weeks.  They also needed him flat until the aorta at the groin site had clotted off and was not bleeding.  That took all afternoon.  He's been up walking and guess what...not dizzy!  Not out of breath!  Not like an 80 year old!  He's my boy, my 19 year old boy with a normal, albeit computerized heartbeat.

I am amazed!  I am amazed at God and I am amazed at science and I am amazed at our skilled team of cardiologists.  We are truly blessed.

Sam had a panic attack during the procedure and hyperventilated so that was traumatic for him.  When I kissed him in the recovery room, I said, "Listen to your heartbeat Sam!  It's normal!" He got pretty emotional and his lips quivered but he was afraid to cry, just looked shocked and panicked.  He is overwhelmed.  It's been a rough day with everything he has witnessed and been through but we will work through that.

Thank you for so many prayers and warm thoughts. Sam was able to have a blessing from his brother and cousin before we left and all of his friends serving missions have been praying for him and that has given him so much strength to feel all that love.  He has the greatest friends!

Tomorrow, I will be trained on how to care for things from here on out.  I'm still so overwhelmed with what we have been through this year and what lies ahead even still.  I mostly did okay today but it took every ounce of energy I had to stay in a place of hope and faith.  At 11:33 this morning, I was hit with the most profound feeling that I needed to pray at that very minute.  At the same time, I felt extremely panicked but I sat on the edge of my chair and prayed, then waited for a nurse to come through the door to tell me Sam had coded...they didn't and I'm sure now that he didn't and since I was crying when the doctor came out to let me know things went well, I forgot to ask what happened at 11:33.

Whatever that was's okay now.  I know we will have some trauma to work through once the adrenaline tide retreats and all of this will hit me hard, like it always does when the dust settles.

PS...It's been really hard to find any literature on heart conditions and Dyskeratosis Congenita.  All the doctors say...Nope...not related.  In my mom of mom hearts, I am having a hard time jumping on their bandwagon.  I was shocked to pieces when the Fellow came in and told me that he did find one Journal article describing a similar situation in a DC patient.  I asked him to print me a copy and I hope he remembers.  I also asked if he and Dr. F would be willing to write up a case article on Sam so that it is at least documented that a boy with DC has conduction heart issues as well as cardiac AVM's.

It was priceless to see the look on the Fellow's face when I asked him for that favor!  It was like a kid at Christmastime.  I love having doctors who love the opportunity to learn.  He was almost giddy which made me smile.  I actually wanted to hug him but refrained...Ha ha.

Monday, September 11, 2017

Surgery Eve

We made it to Salt Lake...a trip that was a little longer than usual.  A couple of hours from home, Spencer called and Shelbie was having an IgG reaction...I think.  She had lost her peripheral vision in her right eye and got upset.  She told Spencer to get her some medication but she told him the wrong meds and the wrong dose!  He was just doing what he was told but she ended up taking triple the dose she was suppose to take.

I had to pull over and do a little research about what do with a slight drug overdose.  By the time I finished that and communicating with them, Sam was feeling sick so I had to round up some nausea meds for him.  Probably nerves and not eating.  It's never easy.

So far, I think they have avoided an ER trip.  I'm so glad Spencer is there but I really should have insisted that they come so I can keep an eye on things.  It also taught me that I need to come up with a chart of problems/symptoms and what med to take and how much.  I just can't trust that she has the memory power to figure it out on her own.  Life is getting so complicated and overwhelming...

A praying mantis outside of our hotel room tonight.  Even the bugs are praying for Sam. 

Sam has been pretty good on the way down but tonight, not so good.  I have tried to talk to him about what he is feeling but he just shrugs his shoulders and I get nothing.  I had no choice but to shake some thoughts out of his distant mind and tightly pursed lips, so we had a game of 'Would you rather'.

Would you rather be awake or asleep for surgery?
Would you rather have bowel reconstruction, bone marrow biopsy or pace maker surgery?
       (After tomorrow, he will have had all three surgeries)

You get the picture...It really helped and he did a lot of talking.  He also wondered what the lowest heart rate on record is so we had some fun doing a little record researching.

Did you know the lowest recorded heart rate in a 'healthy' person was 26 bpm in an 81 year old, in 2014?  It's debatable to me how healthy the heart of an 81 year old can really be.  The next lowest heart rate is a 5 time winner of the Tour de France with a heart rate of 28!  Looks like Sam is tied for the world record!

The thing he is worried the most about is being awake for such a long surgery.
 He asked, "If I forget tomorrow, please remind the doctor that Versed and Fentanyl don't work for me and they usually have to give me way more than normal people?  I just really want to not be awake for this.  I don't want to feel them inside my heart."  Ugh...the things you never want to hear from your child.

I am feeling very anxious tonight.  I just realized how serious this is.  I just realized that this isn't just a band-aid; as if we get to take it out when his heart is healed.  His heart is sick and will not be healed.  For the rest of his life, he will have a computer operating his beating heart.  For the next 8 weeks, he won't be able to use his left arm.  For the next several months, I will have to monitor his pace maker several times a day to be sure it is keeping beat.  This is not a 'place a pace maker and forget about it' kind of deal.  I guess I hadn't thought that far ahead.  I'm a little overwhelmed to say the least.   The panic comes in waves and it takes a lot of energy to keep my thoughts focused on the Savior and my inheritance of hope and faith.

Sam is also worried about what it's going to be like to feel his heart beating 65 times a minute.  He's really nervous about that.  Scared in fact.  Think about it...for months he has become accustomed to abnormal and it's his normal.  He doesn't even remember when his heart beat normally. Tomorrow it will be more than double what he lives with.  I'm sure that will feel so strange.  Funny how being normal can be such a scary thing.  We live in such a strange sort of reality.

Thank you to so many who are praying for Sam, Shelbie and Spencer.  This is pretty hard but I guess it's what we do and I keep telling myself, time will continue to tick by, and no feeling we suffer through in each minute will last forever.

Sunday, September 10, 2017

Standing Amazed

I should break this up into a couple of posts rather than one long one...but here we go!

Friday was Spencer's birthday!  23 years for this son of mine.  He couldn't come home from Utah until Saturday so we celebrated then.  

Back in May, we stumbled upon this little cafe in a neighboring small town.  With our food, we each got entered in a drawing for a chopper motorcycle.  The ticket Spencer got was his birthdate and the drawing for the bike was the day after his birthday so he was sure it was a sign he would win the bike.  He has held on to that ticket all these months.  Part of his birthday request was to go back for the drawing and pick up his bike!

So we did!  Holy Cow...that little restaurant had transformed into a biker bar!!  It was hilarious and embarrassing.  We have had some friends visiting from Colorado and they were with us.  I really had no idea what the event would be like but clearly, not a wholesome family experience  but it was still kind of fun to see all these  people there to win a motorcycle.  6000 people entered the drawing. Spencer didn't win...

 We finished our celebration with dinner at Texas Roadhouse, a birthday 'ride' on the saddle and home to open presents.  We had a great night!
 Tonight, my Wasband's nephews were all back in town to start college in the morning and Spencer's cousin also had a birthday a few days ago so we had one big celebration tonight for both of them. They are such great kids and I'm glad to have them all back again!  We had a full house and lots of laughter tonight.
Tomorrow, Sam and I will leave for Salt Lake.  He is scheduled for surgery early Tuesday morning.  Spencer's was suppose to start his new job this week but that was postponed until next week which is such a great blessing!  He will stay here with Shelbie.  I can't really leave Shelbie alone in case she has a seizure with loss of consciousness.  So, I'm relieved that has all worked out.  She had a big one last night in her sleep. Ugh.

Sam is in really good spirits.  Spencer and my nephew gave him a beautiful blessing tonight.  It's amazing how we can feel the weight of this situation yet, at the same time, feel peace.

The following words came to me in church today as I pondered on how we will get through the week.

Stand Amazed...

So, this is my plan for getting through the week.

We are going to stand still and watch miracles happen.  We are going to be amazed at all the ways God will orchestrate, protect, bless, inspire and use this experience for our good.

This is not necessarily going to be an easy thing for us to do but it's going to be the best thing for us to do.  I know that as hard as I will be trying to do this, the adversary will be trying just as hard to discourage and frustrate my intentions.  I know that for three hours, while Sam is in surgery, it will take every ounce of hope and faith to remain calm. I already worry so much about all the other defects in his heart, the AVM's, the PFO, the right bundle branch block and the increasing pressure in his left chamber.  I just hope that none of these create more complications than already exist with pace maker surgery.  I just wish I didn't have to be alone.

But, I can't wander into these places.  There is a reason Sam is still here, even with a heart that only beats every 2.27 seconds. He already is a miracle and I know this and understand this.  

So, here we go...It will be a big week and then with just a few days to regroup, we will be back to Salt Lake next week for some big testing for Shelbie...more on her brain and autonomic nervous system.

In a strange way...I can't wait to be amazed at all the love we will find from our Father in Heaven this week and feel the Angels close by.


Wednesday, September 6, 2017

That boy!

Sam loves to think he is invincible.  He loves to push the limits physically.

Tuesday morning, I decided to gently tell him his heart is showing increased signs of struggle and he should take a little more caution in how far he pushes himself.  I tried to balance the reality with what I know he can handle emotionally.

Well, he got mad.   "I've had a heart problem forever, it's not just going to quit now, the week before a pacemaker!"

"Even hearts have an expiration date.  God doesn't want us to do dumb things to create more trouble than is necessary.  Just tone it down, that's all." was my reply.

He left for work right after, mad.  He slammed the front door and was gone.

About 2 hours later, he came back through the door with a bruised face and the skin off his nose with blood all over.

"What happened??!!"
"I'm not telling you!"
"hmmmm, you did something crazy to prove a point that you can do whatever you want."

He attempted a double back flip on the floor, no trampoline, and missed the landing.  His face hit the floor.  I wanted to yell at him even though I'm not a yelling type of person but then I figured he had already suffered the natural consequences of being mad and doing something stupid...even though it's a trick he can actually do and has, it's a little funny if you think about it. A little healthy Karma.

Still...I was angry that he didn't take into consideration that the rest of us are worried about him.  He got cleaned up and went back to work.  I stewed all afternoon about what to do with him and what to say because in my mind, this wasn't over.

Here's what I decided to do...

I took it to his work and held it out in front of me, gave him a hug and turned around and walked out.  I looked back and saw him smile.  I think he got the message more than any loud exchange of words could have done. Love conquers all!  Showing extra love and understanding seems to get me farther than lectures.   He's been better today.  His face is a mess but he's been a little less rebellious and a little more respectful. I know this is so hard on him!

Shelbie is finally back!  She's been awake almost all day and even had a photo shoot!  Praying this continues.

Spencer had a job interview today in Utah and got the job! So that's a relief.  He will be loading trucks at UPS.  He will work a night shift from 2:30am -8:30 am.  He thinks those are perfect hours so he can do videography all day long.  The boy never sleeps.  He worries me.  He is losing weight, can't sleep and his heart runs to it's own beat, but nothing like Sam's yet.  He called tonight and his autoimmune eye disease is back!  Tomorrow I will have to contact his Opthalmologist and see if they can get a prescription called in to Utah before it gets worse.

It's never easy these days but I guess, if you look hard, it was a good day.  I just pray Spencer can stay in Utah and stay healthy.  He needs this break to try to see his dreams come true.

5 more far, so good.


Tuesday, September 5, 2017

The Rumble and Roar

I'm becoming quite acquainted with the familiar rumble and roar I live with nearly every single day!

What is the rumble and roar?

It's the rumbling of anxiety and panic that comes out of nowhere and roars in my head.  I'm never expecting it.  Today has been a rumble and roar kind of day; when somehow, all the busyness in my head scatters and everything I spend energy running from, surfaces.  It's a horrible feeling.

Life was better before MyChart I think.  I've only become acquainted with it since we started going to U of U medical center and Huntsman's.  It's the preferred way that our doctors keep in touch with us.  This morning, I got the official results of Sam's 48 holter monitor test.  Several times his heart rate fell to 28 beats per minute.  That's 2.27 seconds without a heart beat.

I also got the written results of his EKG from last week and what was sinus bradycardia has now become a Junctional Escape Rhythm with a right axis deviation.

Things just got really serious.

I know that I have been mustering up all the faith in the world in God, his timing, his purpose...but that takes energy.  It takes effort.  It takes intention and focus and trust and hope and so much more.  It's the hardest thing in the world to do.

Escape rhythms happens 2-3 seconds after the sinus node fails to initiate a beat.

I'm pretty scared.  I haven't told Sam or Shelbie.  I told Spencer this morning because I just needed to get it out of my head.  He said, "Mom.  You know there is a reason his surgery was postponed.  This means nothing.  He's going to be okay.  You have to keep the faith mom."

This is a big job!  Right after that, Sam said he was going to the trampoline park to jump.  I didn't have the heart to tell him no.  Maybe I should.  Maybe I put too much trust in God that he will protect Sam's heart even if he's exerting energy.  Part of me strongly believes that my kids are doing so well, all things considered, because I keep so much from them.  The mind is a powerful thing.

I knew I had to plan something to keep him busy that didn't involve much exertion so we went to the State Fair.   We were going to do that anyway, but Shelbie is still sick!  What is this like week 3?  She sleeps forever, to the point I wonder if she is even alive. I don't even know what's wrong with her.  No clue but something is not right.  She insisted that we go without her but that was the hardest choose which sick kid to supervise.  UGH...I don't want to do hard things anymore...whether I can or not...I don't want to.

Anyways, here are today's happenings... I had to clean houses this morning like I usually do on Monday's.  The early morning sun looked like a pumpkin as it rose to the level of smoke that fills our little town from the burning States around us.  I came home to Spencer giving Sam a haircut and when I finished a little more work, we left for the fair.

I taught Spence how to cut hair before he went on his mission so he could cut his own hair and his companion's.  That's exactly what he ended up doing for two years so he's pretty good.  He did a great job on Sam's.  He uses both scissors and clippers. 

I think the only reason I go to the fair is to take a picture of the midway.  I love pictures of Ferris Wheels for no apparent reason.  There is no filter on this picture...It's so smoky here. 

From a distance, it just looks like such a happy, carefree place to be. 

I'm actually not sure why I go to the Fair.  I'm not especially fond of the people.  I'm definitely not crazy about the food.  I don't trust the rides and the whole experience is just meh!  It use to be the kids loved the Fair because they could eat themselves senseless with all sorts of disgusting foods and that was fun!  Now, they get sick after the first bite of their beloved donut burger but man, they muscled it down!

We love to wander through the arts building and sit through the hypnotist.  I think it's just something cheap to do that allows us to escape the fray at home.

If you happen to be a praying kind of person...we could use a few right about now.  I just want Sam's heart to hang in there just a few more days...7 more days until help arrives.  7 days.  I would love it if Shelbie could turn a corner and find her way back to mediocre health at least and Spencer has to go back to Utah tomorrow and that has me all up in knots too...

The thing is, I don't want to feel captive in this fear...I want the freedom that comes with Faith.


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