Tuesday, December 12, 2017

Last Surgery Done


Well, our last surgery for 2017 is in the books and that's a wrap!  At least for now.  It was not without it's frustrations today and fearful moments last night.

It's always amazing how much you can see the hand of God when you're paying attention.

I had intended to stay in a hotel on Sunday night rather than staying in Provo with Spencer.  His dad lives 10 minutes from his apartment so the plan was that he would swing by Monday morning and pick him up.  I had this gnawing feeling that I really should stay with Spencer so, that is what I did.  Sunday night was going okay.  He got 32 ounces of the colon cleanse stuff down within an hour and we just watched movies the remainder of the evening.  He was doing fine.

At about 11, we decided to call it a day and he insisted that I sleep in his bed and he would sleep on the couch.  His roommate had surgery last week so he is home recovering with his parents so it was just Spencer and I.  I didn't fall asleep until just after midnight.

Just before 1:00 am, I awoke to Spencer yelling for me, "MOM!  I need your help!"
His apartment is small, just a two bedroom so it didn't take me more than a second to run to the hall where I saw him clawing at the wall to keep from falling to the floor.   I grabbed him just in time and tried to lay him down gently on the cold tiled floor.  His face was ash grey and his eyes were rolling back in his head.

It's amazing how your brain can process literally a million things in less than 10 seconds.  I cradled his head in my hands and in disbelief just stared at his limp body while yelling, "Spencer!! Don't leave me!  Stay with me Spence!"  In that amount of time, maybe a few seconds longer, he opened his eyes, I couldn't even believe we were doing this again!

As I sat on the floor beside him, I was trying to figure out what to do...was it his heart?  He had to stop his heart medication in preparation for surgery.  I had the thought that maybe his blood sugar was low.  I thought about calling 911 but didn't have my phone close by and I didn't know his address, apartment number or even landmarks to describe where to come.  I wondered if this was how it was going to end...should I try to save him or let him go?  And somewhere in all of that mess in my head, I just called up to Heaven..."God!  I need your help!"

It was 20 minutes or so before I could get him back to the couch.  I just sat beside him with cold towels on his head.  I stayed beside him in the living room the rest of the night, afraid to sleep.  I was so grateful that I had chosen to listen to the spirit telling me to stay with him instead of in Salt Lake at a hotel.

I had a chance to talk to our doctor before surgery started but honestly, I think we're at the end of the road with her.  I told her about our night and she just stared blankly at me.  I reminded her that Spencer had a pacemaker and she was in the dark about that too.  I asked her if she would test his blood sugar levels and she kept arguing with me that that was not easy to do.  Honestly, I just had to walk away.  I was literally standing in the surgery suite with Spencer at one end, me at the other and a bunch of random people watching me talk to the doctor.  I don't even understand why they took me down there.  It was uncomfortable and she was making no sense to me.  It was like she really didn't care what we had been through!   Spencer was still conscious so I gave him the 'I love you' sign, and walk away...with tears in my eyes.

From there, I went up to the cardiovascular center to see if I could talk to our device nurse.  They are top notch there!  They took me right back, they listened to what happened.  They called our doctor who was in a procedure.  It was a night and day difference.  Within an hour, they had a plan going and met me down in recovery where they interrogated his pacemaker and loop recorder to determine what happened last night.   They don't believe his heart was involved in the episode but they did find 63 other significant events in the past 4 weeks! Ugh...but his pacemaker is keeping the pace and keeping him alive so I guess that's good.

Once they left, our doctor who did the surgery came back in and again, she was not helpful.  She said his GI tract looks completely normal.  So, I asked her if that made any sense and she agreed that it does not.  She said, "Well clearly, he's wasting away."
"I agree! So, where do we go from here?  He can't continue to live like this."
"Well, I don't know.  Just know I'm here waiting for answers just like you are.  I think he's depressed.  I'm going to suggest he start medication when you come back in two weeks.  That will help him put on weight."
"I don't think he's depressed.  He's sick.  Sick and tired but not depressed."

  I guess we will wait to hear from pathology on the biopsies.  I asked her again if she would please check his sugars.  She kept saying, "It's not as easy as you think it is to test that."

Out of the blue though...a nurse came in later and checked his sugar with a glucose meter- not hard at all and sure enough he was low at 60.  She brought in juice and tried to get him to wake up and drink it.  She also said they typically hang a D5 IV when it's this low...but of course...that didn't happen.  As soon as we could go, we did.

A little frustrating today.  A little dramatic.  A lot of blessings and a few tears when I had to say goodbye again!! I made him swear to me that he would eat something every hour.  Now, I'm in a mad scramble to find an Endocrinologist and figure out what is going on with his sugar levels.

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Sunday, December 10, 2017

What If...

I'm in Provo tonight with Spencer.  Tomorrow morning, before the sun wrings out the last of the dark night, he will be checking in for surgery at the University of Utah Medical Center; hopefully our last procedure of 2017 and the one we have waited three months for.   He was home for a couple of days for a wedding gig he was hired to do back in February, so I followed him back this morning and stayed at his apartment for moral support while he does his surgery prep.

For 4 hours, I had some time to wander around my head while Christmas music looped through the speakers of the car, more white noise than anything.   But, the line of a song I've never heard, caught my attention.   In it, a line, something like this..."What if Jesus got what he deserved?"

 There'd be no manger, no Wise Men,  no gifts, no Shepherds, no Angels, no star of wonder and light, no goodwill, no peace at this time of the year; peace this world so desperately needs... In other words, for the Prince of Peace, The Savior of the World, Jesus Christ; surely he should have been born under circumstances more fit for a King.

Man, I've thought about that all day.  What if any of us got what we deserved?  How many miracles would we be missing out on?  The humility, the wisdom, the guidance, the Spirit that visits us and calms our troubled heart? The generous gifts of the Spirit? What of the light and wonder as we see miracles come in the midst of a trial? Imagine never feeling the goodwill and kindness of others because things like that rarely happen in circumstances more deserving.  How would we ever come to know peace if we had never understand chaos and anxiety?

The more I think about this, the more I think about Mary.  Surely, she deserved more.  She must have been an amazing woman; a woman of great strength, with faith that made her equal to the task at hand. I can't imagine Mary ever complained about the less than deserving circumstances she found herself in; after days on the back of a Donkey, then no room to rest, all while 9 months pregnant.  I'm sure she felt painfully human at times but a paradoxical sense of strength as her spirit rose above, and rather than complain, I imagine her engaging the spirit for strength to be the woman God had set her apart to be.  Surely, she must have known it was necessary and needed, something we all deserved- a Savior.

What if, in the midst of our trials, we too could see beyond our painfully human experience to the sanctifying rise of the spirit.  What if we too, could see that the struggle is the best part of a deserving life?  Imagine all the light and wonder we forget to notice?

I hope tomorrow, as I think about Shelbie at home having a really hard time, Sam struggling with his neurological problems and sit by the hospital bed of Spencer, what if I see, instead, a Manger that sets apart from the cares of the worldliness around us?  That brings to my mind wisdom as I navigate these deserving circumstances.  What if I feel guided and watched over by Angels instead of lonely and isolated?  What if, in these dark and depressing times, I see more light and wonder than I could ever imagine for myself?  What if I tried a little harder to be equal to the task of what is required of me as a mother to these amazing children? What if this is exactly what I deserved?


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Thursday, December 7, 2017

Not enough keepers

This is the best thing I've heard all week...

"It's a Zoo out there and there aren't enough Keepers."  It perfectly describes the mess we have found ourselves in.

Insurance.  It's going to send me to an early grave, there's no doubt about it.  It's an impossible problem to which I can see no answer.   It's become my full time job.

The saga continues over the insurance mess my Wasband managed to get us in.  I know he had good intentions...but that doesn't change the fact that it's a mess.  You know it's a disaster when The State of Idaho and Health and Welfare say, "Oh may God bless you."  Sadly, this has not brought out the best in either of us.  Wednesday, I spent 30 minutes in a heated discussion with my Wasband over what to do.   I can't talk to him anymore about this.  I literally get dizzy and feel like I'm going to pass out when we have to discuss this.

He wants a solution with a guarantee.  That does not exist. I want to just make a decision and live on faith and a prayer.  I have spoken to my accountant, my insurance agent, my insurance company, the State of Idaho, the Department of Health and Welfare and no one can predict the outcome of this.

Our two options are, try to get the boys off the Wasband's old plan and pray that Bridgespan steps up to the plate and reprocesses all the claims for 6 months and covers the ER visit for Spencer to St. George and a hospital that is out of network.   If this happens, the worst case scenario is, I end up with a $3500.00 bill.

The second option is to leave it alone, let the Wasband's plan pay out as a primary insurance for the 6 months the boys were on it and when I do my taxes in 2018, I will get nailed with all the tax credits for 6 months.  No one can say exactly what this will be but a rough calculation is over $5000.00, and that is merely a guess.

My vote is try to get the Wasband's insurance to just take the boys off the policy and we pretend this whole thing never happened and I take the hit from the ER visit.  My Wasband wants to just leave it alone and I take the hit on taxes.  The problem is, I'm already on probation with the Federal Government from a 2014 disaster which has now been cleared up but for 5 years, I can't make one filing error or I owe them $8000.00.  It's not going to look good for me if this happens.  But maybe Federal prison isn't such a bad thing.  I mean, I could learn to like the color orange and flip flops look comfy.  I get three square meals, a gym pass, a little tv time.  Maybe I could write a book or something fun like that?  You never know?  There could be worse things.

Today, another disaster unfolded in my insurance world.  Since Spencer is working in a different State and insurance is offered as a benefit, by law, he has to accept it.  He got the policy today and they will pay the premium but the deductible is $8000 and not one of his doctors are covered! So now what?  Finding a new team of doctors is absolutely not an option.  If we can somehow find a way to make this work, so he can see his doctors, I'm stuck with his deductible and our family deductible.  That's going to be over $10,000.

I feel like I Never. Get. Ahead.  I lost two big homes I was designing today.  It's a builder's market and homeowners are starting to get scared to build.  Bids are through the roof and it is difficult for the middle class to ever have the dream home they want.   This makes my total of job losses this week alone, 4.  The other two I was suppose to meet with next week and they've already got cold feet.

We are back to living on shear faith but oh...the energy that takes.  It makes me really scared to spend one dime of the $5000.00 gift I received.  I think I need to prepare for another recession in my life and it's likely coming sooner than later.

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Wednesday, December 6, 2017

Downsizing

I've been trying to figure out a way to tighten the belt of the family budget and that's a tough one.  We live in a very simple way and don't really need a lot to be happy.  There is one area that drives me crazy...all the time.  Satellite TV.  What a waste of money so when I announced to this tribe of mine that TV was going the way of the Dodo bird, there was a small uprising.  So, I bargained with them that I would buy Apple TV, Netflix and Hulu and still save myself over a $100 every month. 

On Black Friday, as promised, I bought Apple TV.  I brought it home and put the boys in charge of disconnecting the Satellite and connecting Apple TV.  While they did that, I jumped on the computer to cancel Satellite service.  I figured I would do it online because I was all peopled out for the day and it was probably easier online. 

So, nope.  Not easier.  I've had the same service for 8 years so I couldn't remember my log in information.  I got locked out of the account so I had to call a real, live person.  Ugh.  It use to be all I wanted, was to speak to a human being rather than a computer but I've since changed my view of that. 

I explain the problem and he proceeds to run me through the most preposterous exercise to cancel service.

Satellite Man: "I'm going to need your 4 digit pin."
Me: "That's the problem, I don't know what that would be.  It's been 8 years."
Satellite Man: "Well, I'm going to need that in order to disconnect service."

Apparently, he thought I was joking when I said I didn't know the 4 digit pin...So, I had no choice but to throw out some random combinations of my favorite numbers.

Me:"5974"
Satellite Man:"Nope"
Me: "3247...6453...5419...4296..." I just rattle off a series of numbers and with each permutation he says, "Nope."  I know he's never going to say yes so I say, "I'm not sure if you heard me earlier on but I don't remember the 4 digit pin.  I can give you my social security number, phone number, birthday numbers, the number of kids I own, my house number...that's 880... I have...Oh...I have the account number you use to bill me each and every month...would you accept any of those numbers?"

I may have said that last part with a hint of sarcasm. Then...
Satellite Man: "How was your Thanksgiving?"
Me: "Fine."
Satellite Man: "Mine was fine too.  It doesn't even feel like the holidays."
I didn't say anything because it wasn't a question but then he says, "Did you want to know why?"
I'm thinking there's a punchline here so I say, "Why?" expecting this to be a good joke.
Satellite Man: "Because everybody's grouchy."

I ignored that...

Me: "As I said, I don't have that.  Is there another way to cancel my service?"
Satellite Man: "I guess you could answer the secret question."
Me: "Okay, what's that?"
Satellite Man: "Who's your childhood hero?"
Me: "Huh?  I don't have a clue! Why is this so hard?"
Satellite Man: "It's a problem we have of people shutting down someone else's service."

Is this really a thing?  A  new terrorist plot to destroy someone's night in with re-runs?  Is it because there is nothing good on TV these days and terrorists get bored with the usual methods of spreading terror?  Whoever has time to mess with someone's TV needs a hobby and a therapist.  Maybe they need to turn seeing a therapist into their hobby! Dumb.

Anyways...

 So, I turn to Shelbie to ask who her childhood hero was because somehow her email was on the account so I'm thinking she messed with the log in too.  She says, "You."  So I say into the phone..."YOU!"
Satellite Man: "No ma'am."
Me: " Not you, Me, Mom, Kathy...Kat...Kath"
Satellite Man: 'No ma'am."
Me: "Oh for crying out loud!!  Bozo the Clown!"
Satellite Man: "Okay!  That actually worked!"

What the heck?! Seriously, this was a 45 minute phone call.  I feel like this guy and I bonded over secret questions and random numbers!  I'm going to have to send him a Christmas Card.

Finally got the service cancelled but the following Monday, the Satellite company calls me back to apologize for the run around I got because let's be honest, if I was calling to add to my package, you can bet I wouldn't need secret answers or random numbers.  They begged me to stay and I said "NO."
They said, "Why?"  I said, "Because it's too expensive."

They proceeded to put me on a series of brief holds and each time came back with a lower price in order to get me to stay.  Each time, I said, "No."  The last offer I had, went from $159 a month to $40 a month for two TV's for 2 years!  I didn't sign back up but their effort was admirable.

In honor of such a fun time I had with Satellite Man, every secret question, no matter what it is, is going to have Bozo the Clown as my secret answer! 

Fun times...I don't even know why my kids need TV at all.  Have they not been paying attention to the life we live...it's the best reality show out there! 


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Tuesday, December 5, 2017

PET scans and CAT scans

We are a fine crew...so many tests, so little time.

I got Shelbie's PET scan results back yesterday as well as her Tilt Table test from September.  It was not favorable news.   For starters though, her granuloma tumor in her brain remains stable.  The temporal left lobe, cerebellar and the hippocampus are all 10% smaller than the rest of her brain.  There is mild hypometabolic activity.  This is not good news.  This is showing a quite a slowing down in those parts of the brain, the parts that are pretty important for memory, mobility, balance and some other vital functions.  In some ways, this supports the epilepsy diagnosis and shows the brain damage that has occurred from 25 years of seizures.

She has an increase in a protein that controls blood clotting and can contribute to an increase in strokes.  This is interesting since they ruled the 'stroke' to be a seizure but now, we are back to...it could have been a stroke or two she had, not seizures.  The PET scan also showed some possible seizure involvement in other areas of her brain than they had first suspected. 

Our doctor was honest and said she isn't exactly sure how to put all of this together so she is having a large conference again with various Neurologists and they will look in more detail at the scan and determine the next course of action if there is one.

She was also has deterioration in the nerves of her legs.  They have been hunting this problem since our Seattle Days where they did electrical stimulation studies.  From that they discovered clonus (seizures) in her leg muscles and tethered nerves in her legs.  The deterioration is new and was diagnosed via a sweat test.  Again, it's a puzzling issue.  To me, all of these point to mitochondrial advancement as they all have to do with energy and metabolic issues.   We will have to be patient until the Neurologists meet and put it all together.

Samuel has gone downhill in the past few days with his neurological issues.  Sam is my kid who can be hanging over the toilet puking and swear to me that he is not sick.  So, when he admits to any discomfort it's a big deal.  His dizziness has gotten worse, his head hurts when he moves it, or coughs or sneezes, even rolling over in bed hurts his head.  The newest issue though is he is stumbling and falling which is never something he does.  The boy can balance on a 2" webbing, suspended 6' above the ground and even do a flip on it, so something's not right.  I think I finally found a Neurosurgeon in Utah who specializes in Chiari's so I will try to get an appointment soon.

Finally, my kidneys are still taking a beating.  The CAT scan didn't show any kidney stones, so it's off to the Urologist I go!  Ugh.  This just can't be good.  I'm so bugged.  It's been dragging on for weeks now.  I'm sure it will be days before I get in.  I also need to see the Rheumatologist and get a handle on the Lupus. 

That's it for today's fun.  Spencer has started his prep for surgery on Monday.  It's weird all the little details he has to go through before Sunday.  I believe he has to start a clear liquid diet on Saturday so by Monday morning, I'll probably be able to toss the poor kid over my shoulder and carry him into the hospital like a rag doll. 

I'm trying hard to stay in the moment and focused on what has to happen for the day, the hour.  Insurance continues to be a thorn in my side and has yet to be worked out. 

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Monday, December 4, 2017

Secret Santa

We had the surprise of a lifetime on Friday morning.  I was expecting a meeting with some clients who were coming to the house to go over house plans.  Just before the time they were suppose to arrive, I ended up on a phone call from my doctor's nurse who was giving me further instructions for more kidney testing today.  In the middle of that, I heard Shelbie shriek from the front room, "MOM!! You better get out here!"  No sooner did she say that but the doorbell rang. 

I practically hung up on the nurse and hurried to the front room.  I opened the door and saw this sight!

Photo Credit- East Idaho News
 So many friends on my front walk as well as two news cameras and some other news people.  It was a local news station- East Idaho News.  Every December, they help a Secret Santa give away $100,000.  This year he doubled the amount to give away.  We happened to be one of the lucky families.   I was absolutely stunned and shocked and immediately humbled.

With the news team and friends, was the up and coming, amazing vocalist Lexi Walker.  She is a 15 year old with the voice of an Angel.  She sang at President Trumps Inaugural Ball earlier this year and has done gigs with Alex Boye, The Piano Guys and even big names on Broadway.   She was here to see us "We Wish You a Merry Christmas" It was so amazing!

Lexi Walker- Photo Credit East Idaho News

I'm still in shock over this.  People have to vote each year for those in the community they think are deserving of money from the Secret Santa.  It is usually people who have faced hardships of one kind or another.   I think part of why I was so surprised, is because I don't really feel like we have hardships.  I know we have crazy stuff going on but we manage and it's not something acute like cancer that comes so unexpectedly.  It's all we've really known.  I guess we still face the unexpected every day but somehow, I've never really thought of us in that way.  

I was told that over 40 people voted for our family, which again, had me perplexed.  I didn't think 40 people really knew us all that well let alone 40 people all thinking we could use some help!  It's incredibly mind numbing for me to consider. 

From the moment I opened the door until an hour after everyone left, I cried.  In some ways, it felt like the cavalry riding in to the rescue.  We get by just fine but I won't lie, this money has alleviated some serious worry and anxiety.  On Friday afternoon, Sam's car died.  I can't even tell you how happy it felt to not freak out but calmly get it taken care of and pay cash.  He also had very bald tires so I could get him new tires too.  There have been some other unexpected problems this weekend and the money helped take care of those. 

Along with the money, we were given 4 tickets to Lexi Walker's concert here at the University on Saturday night.  It was such a beautiful concert and felt so good to do something other than working.  

We are feeling so blessed and humbled...in many, many ways.  We really missed Spencer and I was hoping he could have come home for the concert but he had to work.  
Photo Credit- East Idaho News
  
Just the simple words 'Thank You' hardly seem adequate for something such as this.  My heart has so much more I want to say but I remain overwhelmed.  I don't know all the 40 some odd people who voted for us.  I don't know the Secret Santa or all the people it took to pull this off.  I wish I could thank them each individually. 

On Friday night, Shelbie wanted to support a friend who was having a fundraiser for IVF.  While we wandered around the craft booths, we came across a wooden sign that said, "We can do hard things."  She bought it and Shelbie said, "I feel like we can really go on to do hard things."  

There is so much power in kindness.  In showing up.  In a lot of ways, seeing all those people on my front step meant more to me than the money.  When I burst into tears, I had no idea there was a check involved.  So often, we feel isolated and on the fringes but on Friday, we didn't feel so alone.  It was a good feeling. An overwhelming feeling...but good.  The news video has now circulated a million times across the internet and I'm totally embarrassed.  I couldn't even walk through Walmart without being recognized as 'that lady from the news'.  I love my quiet, little invisible life...ha ha.  

Thank you for all the wonderful people who care! 



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Friday, December 1, 2017

How Quickly It Falls Apart

Believe me when I say...you can not have a moment or two of enlightenment that isn't directly followed by the very extreme opposite.  I knew this was coming and here we are.

This day completely fell apart and my life just got exponentially more difficult and I can't even believe it.

I have been getting phone calls over the past few days from healthcare providers asking me to send them insurance information.  In addition to phone calls, I have received two letters stating the same thing.  Until today, they didn't say specifically what the problem was and it's a mess.  I even had a billing clerk from the University of Utah say, "God bless you because you just fell into the biggest insurance mess I have ever seen."

That's reassuring. 

Here's the short of it.  My Wasband thought he was being helpful and put our kids on his wife's insurance policy.  It's against the law, if you are in the healthcare exchange to have a secondary insurance policy.  I didn't know they had done this until Spencer's surgery 4 weeks ago, nor did I know it was against the law.  He happened to be there upon check in at the hospital and put it on his file.   I didn't think much about it because we have met our out of pocket max for the year so I didn't think it would matter.  Oh, it matters.

Now, my insurance company, from the exchange, is and has, in some cases, retracted every dime paid out since June 1.  I have been on the phone for two hours late this afternoon.  My insurance is refusing to budge.  The State of Idaho has opened an investigation into me and the situation as of 5:20 pm tonight and I have some pretty angry providers who have lost a lot of money.   I have no clue how this is going to work itself out.  I had no idea this was even a thing...that anything this disastrous could happen.  I don't understand how insurance companies can just take money back like that.

This has now become a full time job and that is no exaggeration.   I'm suppose to hear from the State of Idaho's Escalation team in 3-5 days with their ruling on what is going to happen.  The other setback today was that Spencer's ER trip when his heart stopped was out of my network but in his dad's network.  So, if we are allowed to go back and remove the boys from the secondary insurance and pretend that never existed, I have to pay for the ER visit, over $3000.00.

I am also trying to get signed up with new insurance for the coming year and that deadline is looming.  I had decided on a plan and company, basically the only one I can barely afford, but it looks like they won't cover one of our meds- the plasma that Sam will likely start early next year.   I will hear back on that tomorrow.  Of course they've employed a middle school child to handle their pharmaceutical division so that was challenging to explain what plasma is and why we need it.  (insert eye rolling)

Before all this, I went back to recheck my kidneys this morning and there is no improvement.  They want me to wait one more week and test again and I'm just done with this.  I have no clue anymore what it feels like to be healthy-ish.

It's been a rough week but I knew it was coming.  I even told my kids Sunday night..."buckle up we are in for a wild ride."  I felt it in my bones...Never fails.  This kind of stuff always happens after I speak in church.  Always.  100% of the time.

On a lighter note...When I finally got home from work at 9:30 tonight, Shelbie was the only one home so we went to the grocery store for milk and other essentials, like donuts and popcorn.  It was actually so much fun!  We wandered the aisles, sharing stories from our exhausting days, laughing and just taking a break from the worries that tried to topple us today.   We came home and made dinner- Ichiban.  I usually just buy Top Ramen but when the kids were little and we were richer, I bought Ichiban.  It's so much better than Top Ramen...honestly but instead of 4/$1 it's a dollar each!  I was feeling so rich tonight so we bought a package for each of us.  That's what we had for dinner!  at 10:30 tonight!

I know...it's sounds stupid but it was really a fun little end to the day.  With her first bite of Ichiban, she said, "Oh my gosh, it tastes like childhood."  ha ha...my kids are crazy.  It doesn't take much to make them happy.  It's always just the little things.

I just keep reminding myself that this is all just a test...it will pass and I need to have faith this insurance problem will sort itself out.

I do love this quote I saw today...



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Thursday, November 30, 2017

A Messy Wednesday

A picture is worth a thousand words... This is pretty much how the day went today.  

All this wasted IV tubing, needles, syringes and plasma

We had an infusion disaster tonight.  Even before that, the shipping company that our specialty pharmacy uses, got a little confused and they thought 'overnight' delivery, meant 'whenever you get it delivered' because we didn't get our shipment of Plasma until tonight.  These little things are so frustrating and irritating. Sigh...

I was drawing up the plasma into the syringe and from there, I have to prime the IV tubing.  I was pushing it through the tubing while keeping an eye on the two needles at the end.  The tubing is so tiny and really hard to push and really hard to see.  Sometimes, I need one of the boys to prime the tube because it's so hard.  Anyways, while I was focused on everything else, I didn't notice we had a bad syringe and plasma was spilling out the top.  The kitchen counter was covered in roughly $1000 worth of human plasma.  I immediately felt sick. 

I tried to salvage what was left in the syringe and re-sterilize everything to push back into the bottle it came in but that was sort of a disaster.  I had a bad feeling that it had already been contaminated so I had to dispose of it! This stuff is like liquid gold.  Any wasted drop is heart wrenching.  It takes thousands and thousands of people to donate plasma so that Shelbie can have one dose.  We do this 4 times a month. 

Now, she will have to go a week without a dose and that could be rough, especially this time of year.

Oh well, such is life.  Besides all that, we had a decent day.  There have certainly been some anxious moments.  Sam's dizziness is not improving and now his balance and equilibrium is off and he is feeling pain when he moves his head.  That worries me but I'm struggling to find a Neurologist.  We have such a near perfect team of doctors right now who are all a pretty good fit for us.  It's always stressful to find a new doctor to add to the mix.  We already have two neurologists but they don't deal with Chiari's so that's a bummer.

Anyways... 

I've continued to think so much about gratitude.  For the past few weeks I've had the same wandering thought...How did Christ show gratitude in his most difficult trial; when he knelt in the Garden of Gethsemane?  He must have.  Everything he did, was for a reason and purpose.  He lived the spiritual paradoxes of life perfectly.  We all grab hold of the fact that even He didn't want to do what he was asked to do.  That seems like something we can easily relate to.  Maybe the gratitude was in his willingness to bear the greatest burden ever, without complaint and with such humility and grace.  It's such an interesting thought to me and it's been consuming my mind for days. 

I have a very long way to go.  Right now, I'm working on letting the little molehills of life not turn into mountains of frustration.  I'm talking about the dumbest things, the last straws...the basically meaningless daily grinds.  Sometimes, it is the little things that push you over the edge.  So, I'm working on the little things.

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Monday, November 27, 2017

Starfish

I don't even know where to start for tonight's post.  It's been a full day. 

Yesterday, I gave a talk in church.  I was asked about three weeks ago to speak on gratitude in trials.  That is a deep topic to me and I worked hard to understand that better and learn something that would improve how I live my own life.  I came to understand more, of the concept of spiritual paradox.  How we can feel two different things at the very same time...like the hardness of a trial, yet the blessings and comfort that softens the blows too.  It was actually a very inspiring thought to me. 

I use to have several blogs.  One, I wrote only the funny, happy things of life.  The other, I wrote about our journey through this disease that doesn't seem to be going anywhere.  Somehow, I couldn't bring myself to let the two different worlds I lived in, touch.   Not many years ago, I submitted a memoir I had written to a publisher in New York.  I mostly did it out of curiosity and I honestly expected, if anything, a harsh letter saying I shouldn't waste people's time with my poor writing skills and boring life.

I didn't expect what I received from her.  She said it was promising but she would like me to rewrite it in first person and actually own the story, then resubmit it.  She felt like she was reading a story I had written about someone else's life.   She was right.  I have not wanted to own this story of mine.  I never rewrote the memoir.  I have never been able to figure out how the good and the hard can live together.  I have never been able to make my story read smaller and less overwhelming than it is, so I kept it all separated.  My handwritten journals are the very same.  I have journals of hard.  I have journals of mundane.  I have journals of spiritual journeys I've been on.  I have journals where I use my inside voice of frustrations and fears.

Somehow, all these things are colliding and it makes me feel overwhelmed and vulnerable.  I have spent more energy than seems humanly possible not letting myself feel my own thoughts.  This year, so many things have happened with the kids' health.  So many, many things unrelated to health issues have transpired and they all seem to catch me off guard all the time. 

Today, Shelbie and I left well before sunrise for her brain PET scan at Huntsman's in Utah.  It's been a long time since we have been there.  Lately, all of our appointments have been at the University Hospital.  The Huntsman's is like nothing I have experienced before. 

I remember the first time we arrived, I noticed how full the waiting rooms at the various clinics were, yet no one made eye contact and no one spoke to anyone else.  It was as if we all carried these heavy burdens we didn't want anyone else to see or maybe they did want to be seen but didn't know how to do that.  It felt weird to me and made me feel so much sadness for each person's trials.  I promised I would never sit there and let an opportunity to share someone's burden go by.

Do you remember the story about the man throwing the washed up starfish on the beach, back into the ocean one by one?  Someone said he was wasting his time and he could never make a difference in the number washed up...but he picked one up and tossed it back in the water and said, "It mattered to that one."

That's how I feel when I go to Huntsman.  There are so many stories!  So many stories that I want to hear and witness.  So many hurts that are hidden and sorrows unspoken.  I just want to sit and listen to them all, wrap all those stories up and make them all better. 

Today was no different.  I sat beside a man who was waiting for his wife.  He proceeded to tell me her story of a rare cancer of the neurological system that has now spread to her liver and bones.  It started 6 years ago.  He shared tender details that I felt honored to hear.  We talked and talked until they came for Shelbie.  We said goodbye and then the man and I talked some more. His name is Royal.  He's all but lost most of his friends,  He's lost his income from taking care of her.  His out of pocket costs per month are $2500 for her medication.  My heart just ached for him. 

It wasn't long before the nurse brought his wife out.  He saw her out the corner of his eye and his face lit up and said, "There's my girl!" They have been married 30 years! It's been a long while since I saw anything so sweet.  Everything just has me so emotional these days and it took everything I had not to cry.  On the one hand, I was so happy for them that they had such a love for each other.  I will never know what it is like to be married to someone for 30 years and hear them say, "There's my girl!".  How sweet that must be to belong to someone who, after so long, still thinks you're the best thing to happen to them? 

We said our goodbyes and it seemed like the waiting room had cleared out.  I was feeling a little anxious so I walked up to the library but researching as usual, couldn't hold my attention.  I went to the cafeteria but food sounded like a bad idea too so I stood by the railing outside of the Radiology department and listened to a gentleman play the accordion.  It was beautiful!  He played Secret Prayer, Abide with Me and then How Great Thou Art.   It was as if Heaven requested that playlist for me today.



I am beginning to understand how life can be so beautifully hard, together, and what a wonderful blessing that is.

While I was waiting, Sam called and said, "Hey mom, did you hire someone to come and put lights up on the house?"
"No.  Are there lights on our house?" I asked
"Well, there are guys out here starting."
"Oh no!! They have the wrong house!  You need to let them know they have the wrong house!"
"Mom, you know I don't like confrontation! Can you just tell them?"
"Well, I don't know who to tell.  You aren't being confrontational, they will be glad you told them before they had to take it all down."

He did, and called me back to tell me they did in fact have the wrong house.

But...when we drove up tonight... my house is covered in lights!! It's so beautiful and what a lovely surprise!  It was suppose to be a secret I guess.  I don't know for sure who is responsible but it was such a beautiful sight to see!  I am so appreciative for the generous and loving thoughts.  We have been very blessed and cared for this month.  I wish I knew who the many people are I can thank.
Even a fresh wreath!

I know...my photography skills are awful but you get the idea!  It really is beautiful!
 I know this post is too long for anyone to read through but the truth is...I feel like the past few months, I've been that washed up starfish.  Not that I wish my life was different, I've just been so extremely drained and exhausted in ways I didn't think were possible.  All of this love and undeserved attention, was as if I've been picked up and thrown back in the water where I needed to be and it's made a difference to me and to my kids!!  In big ways!   I am not doing anything spectacular, extraordinary or amazing.  I'm not super human or special in any way.  I'm just slogging through the trials like everyone else around me.  I want to do my part to share the loads of those around me both people I know and strangers I share a seat with in a hospital waiting room.



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Sunday, November 26, 2017

Thanksgiving week


We have had our usual busy week around here but a good week too.  The kids were feeling pretty good.  Spencer got home on Wednesday afternoon and no sooner did he arrive, the kids took off for the evening to hang out with their cousins and Aunt and Uncle from Indiana.  I'm glad they got to spend time with them.  They are such fun people.

We had a short but awesome visit from our friends in Colorado who came into town briefly.  Spencer served part of his mission in their ward.  They are the cream of the crop kind of people!  I can't even remember when our friendship started.  I do know we started out just texting and they have come to visit a couple of times since Spencer's been home.  It's like we are sisters and have always known each other.   When we are together, we laugh...a lot!



Thanksgiving day itself was great.  I made way more food than we could ever manage.  Our neighbors came down mid morning for snacking and by late afternoon, we were feasting on turkey.  I just have to say, I'm not a fan of cooking turkey.  It's messy to get it ready for the oven and messy to clean up and then after all that work, it's dry.  This year, I decided to go slow and low.  So I cooked it for a longer time on a lower temperature and it was melt in your mouth good.  I didn't do any fancy marinades or brines, just a good rub down with butter and the usual spices.  I didn't bother to take any pictures...you've all seen a turkey before.

We aren't into shopping much so the rest of the week was just hanging out together.  I am in charge of a tree for the Festival of Trees so all day Friday, I made ornaments and then all of Saturday afternoon, after I worked at the Temple, the kids helped me decorate it.  We had so much fun together and they were a big help.  From Tuesday to Saturday, the tree will be auctioned off to the highest bidder.

Here are some pictures from our week.


Our Thanksgiving group...a couple of the kids' friends from their ward joined us. 

My kids could care less about the turkey or stuffing but they won't let a holiday go by without my cheeseball. 
Here are the Nordic Santas I made.  They were the cutest! 24 of them!  I was going to buy them but they are $12 each so I made the myself. 

Festival of Trees 

The auction is in Rigby at the library.  It will be a fun week as people can go and look at all of the donated trees!
Tomorrow, Shelbie and I leave for Salt Lake for her brain PET scan.  It will be another departure time of early and we will be home late.  I'm praying things are stable.  I want so badly to get some good news.

Also this week, I need to get Sam in for a neurology referral.  He is having a hard time again with dizzy spells and his head hurts when he moves it...like it hurts all the time, not like a headache.  It hurts when he sneezes or even looks down.  These are signs of cerebral spinal blockage.  I think it can come and go but it's been happening too much this year.

I will have some repeat bloodwork etc. on my kidneys and if things aren't better, we will start fighting for a CT scan.
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Monday, November 20, 2017

This crazy life

I actually had an epiphany this weekend about the state of my life...I mean besides crazy.

But...you're going to have to wait for another post before I dive into that topic. I am so far behind on taking care of my house and my kids.  Even though I really wanted to try to get some rest this weekend and try to feel better, that didn't happen.  Not at all.  I saw all the things around this place that have been driving me bonkers and tore into them.  The main thing was the wall I ripped out in the summer!  Yes, it's been undone since then...just an ugly eye sore.  I got as far as sheet rocking it and then I don't know...someone tried to die or something and I got distracted.

But it's done!  Mud, sanding, more mud, sanding, texture and painted even!   It's far from perfect or ideal but it looks like I made an effort to care...so that's good.  I actually think it looks awesome for the likes of me with no real handyman experience.  Sam cut the shims off from the door we hung this summer on Shelbie's room so she doesn't get "shanked" (her words) every night when she gets up in the dark.

Since all of us have been sick with one thing or another the past few weeks, I bleached all the hard surfaces, washed all the blinds and scrubbed all the baseboards.  I vacuumed the mattresses, cleaned out the storage room, cleaned out my closet and the garage.

I did a lot!  What I didn't do, that I should have done was create the handmade Nordic Santa ornaments for the Festival of Trees that I am in charge of this coming Saturday.  I have a feeling there will be some long days and short nights in my very near future somewhere between pie making, turkey basting and cheese balls!

In kid news...Spencer is at 4 weeks post surgery.  He is doing okay. I can tell when I talk to him that he is worn out and feeling pretty poor.  I don't think he realizes how much his body has been through both in mind and spirit.  He didn't give himself any time to recover from surgery, he started his new job just 4 days after surgery and starting a new job when you feel great is hard.

Sam is pretty much feeling better from pneumonia.  His heart has had some issues Saturday and Sunday which I'm not sure what to do...but like usual, we wait and see what comes of it.  It keeps me on my toes to live like that.  I've needed to get a bunch of paperwork for him to get signed up with disability services at College.  I finally did that today!   It actually was easier than I thought to rustle up all the testing he had back in 4th grade...which is what the College was asking for!  So, jumping through hoops this afternoon was all sorts of fun.

Shelbie...Sometimes, I'm surprised I don't get fired from being a mom!  Seriously!  She has been complaining all weekend about her broken finger.  I kept saying, "Shelbie, of course it's going to hurt, it's broken.  Give it time."  But she insisted..."There's something not right mom."

So, this morning I unwrapped it to see if the swelling was down and it was down a lot but call me crazy... I don't think this is right!


 I was shocked when I saw this!   We are 5 days out and the darn finger is starting to heal this way!!  I called the nurse in the clinic where it was 'set' and explained what was happening and she said she would show the pictures and x-rays to one of the other providers.  She called back 10 minutes later and said, "I'm sorry, she probably needs to have some pins placed so we are sending a referral to the ortho surgeon."  Sheesh!  I should have been more on top of this. I feel bad.

As I was driving to work this morning in Idaho Falls, I was laughing at how sometimes, I treat my kids like I treat my cars.  My last car had no paint on the bumper for 6 of the 9 years I owned it because I just didn't have the resources to fix it so we just became accustomed to the lousy looking car.  Honestly, for one second I thought...It's just a pinky finger!  It's not the end of the world if it's a little crooked.  No big deal!   But then I thought...I guess we better try to repair it so it looks new-ish again!  Ha ha ha...I'm a dork!  Actually, I'm just tired.  It's tiring trying to keep us all looking like newer models than we are!

Anyways...

 I think our doctor forgot that Shelbie doesn't produce collagen like the rest of us and she has hypermobility issues so that is likely going to create some problems in healing.   Of course...it can't just be simple.

I'm hoping maybe a different kind of splint but that really feels like wishful thinking. In reality, I believe she will be having surgery and probably by the time they fit us in, it will be re-breaking it and then pinning it or screwing it...whatever they do...but first we have to get through that PET scan on Monday!  Ugh.

Anyways, such is life.  It could be worse.  One crazy day at a time I always say.   Really, I just started saying that.
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Saturday, November 18, 2017

Giving Thanks...

Yep...A Christmas post the week of Thanksgiving. 

What a week it's been so...what else could I do but deck the halls and Fa La La.

Here's the thing I've been thinking about.  I use to be that grumbly person who complained about Christmas crowding out Thanksgiving and even in some cases, Halloween!   Every year, Shelbie begs me on November 1st to put up the tree and decorations and every year, I simply say 'No! It's way too early for Christmas.'

This year, I've spent all year thinking about Christmas.  More specifically, thinking about Christ and how, without Him, I would be so lost.   I've thought about how He was born so humbly and lived so simply, so kindly, so lovingly... He lived the way I ultimately want to live. He lived for me and He lived for you. 

As Thanksgiving is approaching, I thought about all I am thankful for.  You can come up with a list covering all sorts of things to be thankful for.  At times this year, I have had to really use some creativity to find things to be thankful for.  There's plenty but sometimes, it's more like a scavenger hunt  than a cornucopia of goodness spilling out around us. 

On Friday, I sat in a laundromat watching some clothes tumble and couldn't stop thinking about how I love this time of year.  I love that people just naturally become softer and more gentle and the air smells sweet with all things warm and good and hearts are filled and full.  I love that Christ crowds out the pettiness, anger, shortcomings and sadness.  We lean into understanding each other more, lifting and carrying burdens that haven't been shared all year, for some.  It's almost as if we all try to equalize life and the seemingly unfairness that comes with it.  

So anyways, that's why I decided it would be perfect to have Christmas up the week when we really focus on gratitude, and it feels so cozy!  I want to crowd up our life with Christ. We worked on it together, laughed as we tangled ourselves up in lights and listened to holiday tunes while Snapchatting with Spence.  It was an easygoing and much needed night together...to be grateful for Christ. 

The Santa corner.  The porcelain sleeping Santa was made by my mom and my favorite.  The Santa figurine is our favorite real life Santa who passed away two years ago so we honor Mike Powell...a.k.a Santa.

My skinny tree in the corner of my postage stamp room


The Nativity


Of course, my favorite tree decor..I love my little elves and jingle bells. 
So...how are you going to let Christ crowd out the noise as 2017 winds down?


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Thursday, November 16, 2017

I can't resist...




Too true!
Today just has to be a day full of sarcasm because otherwise...

Well, otherwise it would be a really sad day and as it was, the grey clouds hung low and showered their sadness all over the place.

I'm not at liberty to discuss the happenings last night because it involves too many other people, even though I absolutely hate cryptic writings.  Things transpired in our little family that were mostly unexpected and incredibly difficult.  I don't think we stop long enough to consider how our choices affect everyone around us, especially those closest to us.  The kids did not handle the situation very well and spent the night in tears and sadness and lots of anger.  The saddest thing I heard all year came from Sam last night through lots of tears..."I'm so sorry that we are a burden and ruin everything."  I hate nights when all I can do is reassure them that they aren't a burden and that they are loved and the most important part of my life.  My living room has become the place where life falls apart and together we sift through the wreckage and piece it all back together the best we can...and then we go to Taco Bell.  Close to 3 this morning, we called it a night.

I've not been feeling well for weeks. I finally decided to see a doctor about why I can't seem to feel like a human being and  it seems I have a little problem to be addressed.  So, today, I got to spend the day fasting with just clear liquids since midnight last night.  That's not really out of the ordinary for me, I usually get around to eating breakfast around 3 in the afternoon anyways, but the amount of water I had to drink was unreal!  105 ounces today.  I think I went up two dress sizes at least!  And after 2:00 pm I wasn't allowed to pee.  You have no idea what kind of fun that is until you've had a few babies River Dance on your bladder for 9 months at a time.  Your constant prayer becomes...Please don't let me sneeze, cough or laugh.  And...this town needs to fix the potholes in the roads.  Seriously!

When I saw that bladder on the ultrasound screen, I was pretty impressed!  I'm such an over achiever and no one got to appreciate the skill and talent I have in holding my 'clear liquids'.  The tech said, "Good grief, you really followed instructions didn't you?" I'm certain she meant that as a compliment.  That's me, a straight arrow.  Rules are rules.  I'm pretty sure the news on this is going to suck but for today...I'm enjoying a little sarcasm and denial and trying to steer clear of people who are going to screw my life up anymore than it already is.

In other news...because what a boring day today has been...Shelbie broke her finger!  I can't even believe it.  Her friend convinced her to go to church Volleyball tonight and the first time the ball touched her hand, snapped her finger in half.  Straight up, in half.  No little hairline fracture, no wait til the swelling goes down...just a sheared off, clean cut, bone in half; between the first and second knuckles kind of brake.

I was at work of course and I get a call from Sam.  He has watched way too much Brian Reagan.

"Hey Ma!  Umm, you doin' anything right now?"
"Saaammmmmm! What happened?"
"I was just thinking maybe.. like if your finger is dangling, is that just dislocated?"
"Samuel! Whose finger is dangling?"
"Maybe Shelbie's."

After I got him headed to the urgent care with Shelbie in tow, I hurried to lock up the building I was working in and meet them.  Meanwhile, Sam sends me a Snapchat of Shelbie crying in pain with the background music in which the lyrics said, "It's okay to be a little broken..." I have to admit, I laughed.  NOT at her suffering of course but Sam's twisted sense of humor he must have gotten from, well, me, probably.

Brother!   I realize this is so incredibly minor compared to what we have faced but it's the never ending little things that assemble into last straw kinds of things.






At some point before 6 am, I plan to start work for the day!

 
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Tuesday, November 14, 2017

All in a day...

I have an intern working for me still...she's funny.  I think she is surprised at the fast pace we move around here.  It's a little odd that the only office I can provide her is my living room so she's sort of become just another part of the family. 

Everyday we are hopping from project to project and everyday, she comments on how crazy our schedule is and I just laugh...because what else am I suppose to do but laugh anymore.  Having her around has made me realize what an amazing job I have.  I get to do something completely different every single day of the week.

After so early morning work hours, a doctor's appointment for an hour, we headed to decorate a client's home for Christmas.  I've been decorating their home for 8 years now!  It's hard to believe.  (Later this week, I will be decorating a home I've been doing for 25 years!)  It took over 4 hours and I didn't take nearly enough pictures...
Some floral arranging I did

Hanging the stockings...

They have a very simple tree...you can't tell from the photo but the tree is full of tiny red frames with photos of the last 4 generations of family and their names are embossed on the frame.  It's a fun idea.

Love the felted angels
 I got home from that with just enough time to change and head down to Idaho Falls for a presentation.  When I walked in the door, the first thing I saw was Sam and he is sick!! Ugh.  I could tell by his sunken eyes and his wheezy breathing, he has pneumonia again.  I made a quick call, cancelled the presentation and called around to find a doctor who could get us in to confirm my fear.  I ran him in and that took another two hours which left me only an hour before my house was going to fill up with college kids.

In that hour, I whipped up some cupcakes, tidied the house and welcomed my Nephews (they really belong to my Wasband) and all their roommates and friends.  My Wasband's Nephew opened his mission call at my house.  His family, in Indiana had a houseful too, as they Skyped in so he was surrounded with love.

Everyone taped their guess to the mantel but no one was right...He's going to Cambodia!

Taylor

Taylor's family
 He's the cutest kid!  So full of personality and fun.  I've only really gotten to know him this past year because he was so little the last time I was in Indiana, when I was married.  I'm really going to miss him!  He lights up my house when he comes over.


After the shock of that was over, all the kids took him out for a late dinner to Teton Thai and Shelbie treated everyone to a really late movie at the cheap seats and I headed for a late start at my night job.

So...it's been another big day around here. 

Tonight, I'm cramming to get stuff ready for another health insurance meeting tomorrow.  I totaled our medical expenses for 10 months and we are sitting just over $125,000 this year.  It's been a 'light' year since I put off three bone marrow biopsies which would have added an easy $45,000 or more.  I don't mention these things for pity or attention...it's just part of the reality of our life and you have to admit...fairly impressive.   Still ahead is a brain PET scan for a few thousand, Spencer's surgery...and whatever other surprises are coming.

I don't know what to do about Sam.  His lungs are taking a beating with all these pneumonia relapses this year.  Our immunologist is just trying to buy time before he commits to weekly plasma transfusions because it will be for a lifetime when it finally starts.  He is hoping he can hold off until Sam gets a little older but I just don't think that's a good idea anymore.  As much as I hate to tether him to that treatment and the obscene expense of it every week, it's inevitable. 


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Sunday, November 12, 2017

In the mess of Life...There's Grace

I've tried to get this post written for a couple of days but things have been busy around here and other things took priority. 

I'm not even sure where to start.  I guess I really want to focus on the little mercies and miracles I've seen.  I talk a lot about the isolation that comes from the chronic trials and stress that we face.   The past couple of weeks, I've mentioned about the little gifts and heartfelt cards of encouragement that have been showing up on my doorstep...it continues!  I can't even believe it.  I'm overwhelmed that it is still going on.  It has made all the difference in how I have been able manage things.  Isn't it funny how just the fact that someone is thinking of you, can change the perspective and thoughts of despair to an increase in confidence in your ability to keep going. 

I wish I could really give an adequate thanks to those who have been so caring and thoughtful.  It is something I will never forget and a great reminder that I too, can do more for others who are alone and isolated.

This week, I have had to get a handle on my insurance issue since the company I have been with has pulled out of the healthcare exchange.  There are two things I feel powerless over and bring me so much anxiety I will go to any length to avoid it...money and health insurance.  They both add to my impossible situation.   My insurance guy bailed on me a year or so ago when he made some life changes and even though he stayed in the industry...I think, he turned my account over to someone else.  They were actually clueless so any problems I had, I went straight to the help line at the exchange.  I was really lost as to what to do now that I have to find a new carrier but that prayer was answered.  I found a new insurance company to work with, turned all my stuff over to them and started working on a new plan. 

Even though, I'm completely hosed for next year, he was so patient as I cried huge tears that puddled on the edge of his oversized desk. I've never been so embarrassed.  He didn't try to silver line it...or say "At least..."  He just let me have a moment til I could pull it together.  I was so grateful that I had help to navigate things and he patiently explained for the umpteenth time, how deductibles and out of pocket max works because I am too tired to remember all these things.   There is only one company that will cover the specialists we need and that is going to come at a price nearly 5 times in monthly premiums what I pay now!  I'm pretty upset and don't have a clue how I will be able to pay it.

The same day, I found out my car insurance is going up by nearly $200 a month and the night before my health insurance meeting, I got a letter from the mortgage company saying they miscalculated my escrow when I refinanced a year ago so that's going up. 

BUT...these little secret angels who have dropped thoughts along my way each night, have given me my second wind to face this with a renewed faith in the miracles that Heavenly Father can do on my behalf.  This is how we roll...we will do what we've always done...we will watch and wait, do the needful things and see how it all comes together for a long term plan.  It's interesting to me that all this happened the day after I was inspired to take one night off a week and give that income to someone else...who also needs the work.  I'm a little excited to see what happens next in the saga, so stay tuned for January 2018.

IN the meantime, I have had some really amazing opportunities to help people this week.  Helping people in much worse circumstances than me and I could see how many of my past experiences have prepared me to be there for them.  The Lord is amazing and truly, all things do work for our good...and the good of others too.


Spencer came home this weekend...truly my kids are my currency of  happiness!  To each other, they are happiness.  There was a moment when I was so happy and so proud of them as I watched them having fun with each other and smiling so big, even in the midst of our continuing difficulties. 

When he arrived, the first thing he and Sam did was compare their scars and stories of recovery.   We were all sitting in the kitchen and when they both lifted their shirts and I sat there looking at my boys with scars across their chest, I was overwhelmed with our story of where we are and how we got here.  It was a moment for sure!  One of unbelief. 

Anyways...always a lot going on and never a break but such is life. 


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