Thursday, December 31, 2015

12 Tiny Truths of 2015

Tonight, I'm staying up, not to ring in the new year, just to make sure 2015 actually ends and shuts the door behind it on the way out.  I am going to use this post, just to review some of the tiny truths I have learned the past 12 months.

 I am not going to use this post to say how much I am looking forward to a new year...yadda, yadda, yadda!  Not going to say it because...Well, let's just get to the truths for this year, shall we?


Tiny truth #1: Life is hard...really hard.  When you think you know what hard is, just wait, it's about to get harder.

Tiny truth #2: Trials adhere to the old adage; line upon line.  This means that each trial builds upon the last.  We learn valuable truths from one trial to apply to the next.  The level of skill required to take on our trials increases so you better have learned it right the first time...just sayin'.

Tiny truth #3:  The skill level of our trials is right up there around expert but our skill set seems to be stuck at 'dumb and dumber'.   Apparently, this can happen.  So, 2016 is shaping up to be an interesting year with this combination unless I gain some intelligence in the next 8 hours.

Tiny truth #4: Dogs can eat a two pound box of chocolates, they found in a zipped and buckled messenger bag, and all the tin foil they came wrapped in and survive.

Tiny truth #5: After the dog eats a two pound box of chocolates and tin foil, you're gonna wish you had a doggie door.

Tiny truth #6: The human heart can take a lickin' and keep on tickin'

Tiny truth #7: Heaven is for real. And so is a mid-life crisis...it's a terrible experience but is actually good news.  Two of my kids this week, had dreams I died but I am clearly having a mid-life crisis, so at age 47, if this is mid-life then I calculate my actual death, not a dream death to be in another 47 years!  What a relief.  More time to keep screwing up and my kids to dream up more ways for me to die.  Just in case I do die soon, I did scrawl out my Last Will and Testament...The first line says..."Surprise!  I have no money to offer you, just debt.  Sorry.  Oh, and no life insurance either!  I thought I was invincible." (I'm not kidding...I really wrote that...with some sincere apology for being a financial loser.)

Tiny truth #8: It's not so bad being the poster child for mental illness...who doesn't love swinging from one irrational mood to the next?

Tiny truth #9: I can do a hard thing and maybe even enjoy the adrenaline rush that comes in doing it but doing more than one hard thing is just...well...hard.  And not much fun.  I tend to enjoy fun things as opposed to hard things.

Tiny truth #10: Human beings are slobs.  I have plenty of experience to fairly judge the human race.  I have been cleaning up after them for the past 7 years.  The ability for people to make a mess and not notice, is astounding.

Tiny truth # 11: There are some people who actually don't have enough to worry about and need to harp on about all their little injustices that really aren't.   That amazes me really, not enough to worry about?  If you fall into this category, gimme a call, I will share some worries with you and even some anxieties if you want.

Tiny truth #12: Lupus bites.  Salmonella sucks.  Dyskeratosis Congenita is dreadful.  Being an empty nester is for the birds, not me. You can't bleach your hair from dark brown to medium blond in one sitting and I hope you love the color orange. Keeping busy distracts you from how incredibly dysfunctional you are.  Sometimes, the friends you count on can't be counted but the strangers show up and somehow, that's enough.  (I sorta added a few extra truths.)

As a bonus...Tiny truth #13: I am ending this year in a bit of mess. If I had a dollar every time someone said to me, "Well, this is nothing new."  or  " Good thing you are use to problems." Remember this tiny truth...everything is new to a person dealing with chronic health problems.  Every experience, trial, hardship, problem...brings with it a new emotional experience.  I will never get use to watching my kids suffer and worry.  Never.  Life only gets harder and that is the truth.  The ugly truth.  I would like to think that we get use to it, that things get easier but that is not the case.

I've listened to these remarks my entire adult life and I believed it...or, I believed I should be handling it all better than I was.  I regret that I bought into that because now that I am admitting to myself that this is hard, I feel weak and less than perfect...or whatever that feeling is.

One of my favorite songs by Hillary Weeks is, He'll carry you.  There is a line she has written that says, "When no earthly words can take away your sorrow and no human eyes could see what you're going through.  When you've taken your last step, and done all that you can do,  He will lift your heavy load and carry you."

My last tiny truth is that I know what it feels like to have no one left in your life but your Savior.  I know that He and my Father in Heaven have carried me for most of the year.  They have given me more patience, more grace, more love than I probably deserve.  And...That's the truth!

Goodbye...2015!

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Sunday, December 27, 2015

On the edge

2015 is almost a wrap and here we sit on the edge of it's final hours, watching a new year roll in.

It's been an incredible year and by incredible, I mean hard! It's been a year I won't ever forget.  When I look back on this year, I can't say I've been happy with it but it hasn't been short of lessons learned.

Most days, we don't really notice the toll the year has taken on us.  We get up, we do what needs to be done and we repeat that pattern, day after day.  Every so often, the underlying angst breaks through and it stings.  Clearly, we are different.  All of us are just a little weary.

Last night, Shelbie came home to get her clothes packed for her trip to California tonight and had a little nervous breakdown.  She has been at odds with things for two weeks, just on edge about everything.  As it turns out, a new year makes her anxious.  She worries about what is coming next.  She worries that it's another year of struggling...and on and on it goes.

Early this morning, I got a call at 3:10 am.  A call at 3:10 am is typically not a call with good news. On the other end was one of my children.  They have been at their dad's most of the week for the Christmas holiday.  It was a tearful voice of panic on the other end wondering if I was okay.  They had had a bad dream in which I had died.  Apparently, it felt real; too real and they just had to know I was okay.

I wasn't expecting this.  I certainly wasn't expecting a conversation about death and dying in the middle of the night.  It's been all too frequent around here this year. I hardly think it's a topic that circles the average family dinner table in a year, let alone every couple of years.  For us, it feels like a weekly subject that just comes up.

We talked for nearly 45 minutes.  The end of our conversation was the strangest goodbye.  I said goodbye like it was the end.  I left nothing unsaid; no regrets.  I made sure they knew how much I loved them. They shared similar sentiments.

It was sad.  We hung up and I felt scared.  What if it wasn't just a crazy dream?  They called back at 7 and then came home at 8:30 to pick up some things before going to church with their dad.

When you unpack the year, it has, without a doubt, left us all a little on edge.  A little more anxious than usual.  I didn't realize that chronic disease could have this effect on us.  I don't think we will ever be use to this.  Nevertheless, we will soldier on with hope.  Always having hope that better days are coming but most importantly, living without regret.  There are no promised tomorrows.


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Thursday, December 24, 2015

The Currency of Christmas

So, this is Christmas!  The big day is here!  Earlier this week, it struck me that this is Spencer's first Christmas home in 2 years and Sam's last Christmas home for 2 years.  He is eligible to turn in his mission papers in one month!!  One month.  I can hardly even believe it!  It makes this Christmas, extra tender.

This year, the kids are with their dad for Christmas and throughout the weekend, so it's been rather quiet around here.  I spent the majority of the day working.

However...

Wednesday will go down as the best day of the year, next to the day when Spencer got home from his mission.

It all started back in October, the weekend before Spencer got really sick with Salmonella.  He was home for the weekend and I really wanted a family picture since it had been two years.  What is it about family pictures that makes everyone cranky?  We are four adults and no one can ever muster a smile for 30 min.  It's horrible.  I would rather have teeth pulled than do family pictures.  We made a good effort but the pictures were awful!  I hated them.  There was no way I was going to publish them.

For the past two months, I have stewed about those pictures.  I just wanted one perfect picture that captured the essence of our family, not the tired, worn out look that is not becoming of us.  I sent out a family decree, via text message that Wednesday, December 23 would be family picture day at noon!  Everyone was to be ready and smiling!  Complaining, whining, grumbling or anything resembling a bad attitude would not be tolerated. I told them that I wanted nothing more than to have a happy, fun, joyful memory that I could look at every day!

They actually came through!!  I couldn't believe it!  It made my heart light!  It made me cry, actually! I don't remember when I was this incredibly happy! This was pure joy!  Everyone was happy, really happy, not just when the shutter clicked on the camera.  This is us!  This is what life is like.  This picture literally sums up the total of our little existence as a family!


This picture...I love to see the boys protecting their sister.  I wish, beyond any wish of my heart that Shelbie could find a boy who treats her like her brothers treat her.  This is what family is about...holding each other close!

These are all pretty awesome too...





 This one is another favorite...It's unbelievable how much love grows. It's even more unbelievable that Heavenly Father saw fit to send me the best of the best!  He knew that we needed each other so much!


My kids are the currency of my little world and the blessings I have felt this month are the currency of Christmas. There is absolutely nothing of this world that I need.  I just need them.  Shelbie took these pictures and edited them and gave them to me last night.  I cried and cried.

Today, even though I was without them and had to work, these feelings of joy carried over.  In fact, I had a presentation in a town about 20 minutes from home and as I got on the highway to come home, something happened to my car.  I couldn't get past 35 mph. and the steering wheel shook so hard I could hardly keep the car on the road.  I tried to pull over but there was a huge blizzard, the roads were covered in ice and it was pretty treacherous.  I worried that pulling over would be a hazard to others and myself.  I drove so slow until an exit and then took the back roads home so I wasn't in the way so much.  Normally, car problems put me over the edge but I didn't even get upset.  I have no idea what is wrong but, I guess it can wait til after Christmas.

I had a wonderful visitor this afternoon of Christmas Eve, an unexpected one, and that made me happy too.  On my way to work tonight, I stopped to see May and give her some Christmas gifts.  I gave her a family picture and she hung it on her fridge!  It made me smile.  While I was there, I said, "May, have you ever taken a selfie before?"  She giggled like a little girl..."Let's take a Christmas selfie together."

For the record, I stink at selfies!!  I really do but we laughed so hard doing this...I think she doubted my technology skills!   Nevertheless, she is one of my favorite people and I'm glad to have a picture with her.  I was glad to spend a few minutes with her.
 Every year, I wonder why each month can't feel like Christmas.  I don't understand why the spirit is so much stronger in December.  I realize it's the birth of the Savior but isn't that birth something we should revere every day of every month?  I wish I could unlock the secret of making every day feel like Christmas Eve.  It's the currency of Christmas I wish the world could run on everyday!  Wouldn't it be a much better place?

For me...the last two days is exactly what Christmas is about.  I didn't miss the shopping, the endless hours baking or the hustle and bustle.  When all that falls aside, it's amazing to feel what is left.  It's beautiful.  It's the Currency of Christmas that is left.
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Tuesday, December 22, 2015

Coincidence


Today was an interesting day...

I had determined early in November that I wasn't going to be doing as much as I usually do at Christmas.  I just needed to cut back emotionally and physically and keep the holiday simple.

I did however, decide to take some treats in to one of our doctors, the one who I can't live without.  It was still not what I usually do.  I also saved a few for my neighbor who has always been there for us.  Even when they were in India last month, they sent me a message when Spencer was in the hospital to let me know they were thinking of us.  It really had an impact on me.

So, in between things to do, I ran down to drop off the treats.  She was telling me, in an emotional way, how sad she was that our Santa had passed away and we would be missing him.  She was worried about us.   She went on to tell us about a card and some cookies that they received anonymously last week.  It had a picture of Santa on the front and a beautiful sentiment inside.  She was literally moved to tears.

Each year that Santa came, I either invited a family over or we sent Santa to a family who needed some Christmas cheer.  It was always the thing we did.  One year, we had our neighbors over.  They have the sweetest family.  So, in a small way, they had a connection to Santa too.

Anyways, she proceeded to show me the card and let me read the inside.  I didn't really read it while standing in her door.  I asked to take a picture, then hurried home.


When I got home, I read the inside of that card and couldn't stop crying!  When the kids got home, I read it to them.

At around the same time, Shelbie got a message from Santa's daughter to see if we got the cookies and the card she left at our door last week.  Then it clicked...she had left it at the wrong door!

Shelbie explained what she thought happened and sure enough, they had left it at our neighbor's house by mistake.

But...Ya know...I think it was suppose to work out like that!  For one thing, it touched our neighbor because they too, missed Santa. They haven't exactly had the easiest year either so the little visit from 'Santa' in this way was sweet.   For another, tonight would have been the night he was scheduled to come and see us!

It was so cool the way it worked out in the end.  Mike's daughter is going to bring us a copy of the card just so we have it.  I love that she said exactly what Mike would have said to us.  I know that Mike was so happy playing the part of Santa and literally spreading cheer.  I am glad that we have tried really hard to do the same.  Each Monday night this month, I made it a point to plan something special for someone else.  It was our way of filling the void I guess you could say.

So...I hope you are enjoying this week of Christmas and feeling a spirit of joy.
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Sunday, December 20, 2015

And ever o'er its babel sounds

Today is Sunday.

Yesterday, good things were suppose to happen.  I can't say that it was a day much out of the ordinary for us.  Every day has something good in it.   Every day has something bad.

Yet, ever o'er the chatter of the world, we feel heaven's watch! However, it is becoming increasingly more difficult to hear it, find it, feel it.

This weekend, has been an interesting one in my head.  The struggles with finances, insurance, doctor's and continued illness is ever present.  We have had a houseful of company in the mix as well. Spencer came home early Saturday morning with an Elder friend he served with on his mission.  They are buddies now in Utah.  He had to come here to help pack up his sister and move her things into our basement for storage and then Spencer was taking them back to Salt Lake so they can fly out to their home in Pittsburgh.  It was fun to meet both kids and they seem awesome.  We also have a family from Colorado that Spencer baptized, here for the weekend.

We went for lunch and I asked her why she was taking a semester off and she said she was having brain surgery because her cerebellum has been falling into an area at the back of her brain that hadn't closed up.  I said, "Oh, gosh, you have Chiari Malformation!"

Her eyes were as big as I've ever seen, "Yes! No one knows about Chiari!"

It so happens that it is something they suspect in my kids but it hasn't been on the short list of things to worry about so we haven't pursued it. Anyhow...

Among all of the activity, I noticed Spencer was eating Zofran, an anti-nausea medication like popcorn.  Shelbie was riddled with chest pain and I was worrying about Sam up in the mountains with friends and his crappy lungs full of junk. AND, I  was still thinking back to the morning when people from church dropped off a box of food and gifts for the kids.

We've been on the list of gifts for the poor since I lost my job back in 2009.  6 years!  It's been a 6 year struggle for sure but we are a simple family, don't need a lot, expect a lot, require a lot...we are pretty much content with what we have.  Most years, it doesn't bother me but yesterday it did.

The box showed up when I was still at the temple.  The kids just left it in the kitchen. Spencer's friends were here and saw it, the people from Colorado saw it and clearly, it was recognized as something for a needy family.  I felt embarrassed.  I felt my insides burning up. I was ashamed that my kids had to admit that this was their life. From everything I know about each of these visitors, they would be considered among the wealthy of the wealthy.  And here we are...just trying to survive.

I don't understand really where these feelings came from.  I'm not one to care all that much, usually.  But I couldn't help wondering why life has to be so hard for us.  I try so hard!  So hard!  I work harder than anyone I know.  I have multiple part time jobs, most of them I hate but I do them because I feel like God provided them for me but I keep thinking, 'wouldn't it be easier if Heavenly Father just helped me find one decent job that was enough to cover the usual expenses, medical expenses and put some away to cover house repairs, car repairs and all the other things that come up?'  I'm not even asking for extra things like vacations, or any of the other frills everyone around me enjoys without worry.

Instead, I have to worry and panic multiple times a month when there isn't a dime to cover bills, or watch Shelbie give Sam money so he can rent clothes at the college to play racquetball with his friends.  It is hard. It's hard feeling like a failure every day.

It's the babel sounds...the chatter of the world that breaks into my head every now and again and makes it impossible to feel worth, or worthy of any blessing I receive.

 I am grateful.  I express gratitude many times in a day for my daily bread that is provided by a loving Heavenly Father.  I have faith that God knows what he is doing.  He knows that my heart is in the right place.  He knows that I am willing to work, to try and provide for my kids.  He knows that I want nothing more than to be a good mom, an available mom to care for my kids when they need me.  There is no other way that I can see to do this. I am not an employable specimen...my kids are too sick.  I need to have flexible jobs.

There are angels around us, leaning in, bending over us with peace and blessings.  It's been an isolating kind of year for us. So many of my friends have just sort of disappeared from our life.  Everyone has something going on.  We all get consumed with the chatter.  In that process, I feel even more, the presence of our friends and family on the other side, filling our home.  My grandparents, I'm sure are watching over me and my kids.  My friends that are gone like Carma, Carolyn, Irma, Joe, Mike, Konra, Vanna, Reed, Dana...they are all close by.  I can feel them too. I have met new friends this year, who live at a distance but they too just survive in the trenches of chronic illness like we do.

So...for this week, my prayer for all of us is that we can stop and hear the sounds of Heaven instead of the chatter from the world.  We can be still and feel the angels bending near.  There are few of us, immune from life's crushing load, no matter how much of the world's wealth we possess.

From the original 5 verses of  It Came Upon A Midnight Clear, by Edmund Sears, I leave you with this.


And ye, beneath life's crushing load,
Whose forms are bending low,
Who toil along the climbing way
With painful steps and slow,
Look now! for glad and golden hours
come swiftly on the wing.
O rest beside the weary road,
And hear the angels sing!





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Saturday, December 19, 2015

The sounding joy.

Every Saturday, I play the organ in the temple.  This month, I've been playing the classic Christmas tunes and as I play, these songs over and over, reading each verse as I go along, I have gotten much more from the songs than usual.  I get so lost in the words and what deep meaning they hold for me this year, I almost forget to move on.

I love words.  I especially love words that are poetic and reach my heart.

Here are some of my favorites...

"Be near me, Lord Jesus; I ask thee to stay."

"Love me, I pray."

"Fit us for Heaven"

"Above it's sad and lowly plains they bend on hovering wing, and ever o'er its babel sounds, the blessed angels sing."

"The hopes and fears of all the years are met in thee tonight."

"Where meek souls will receive him, still, The dear Christ enters in."

"And in despair, I bowed my head."


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Good things are happening today

Well, I don't know that for sure, but here's the story.

Back in February, we went to a Chinese food joint for dinner.  They brought the customary fortune cookies, the only cookie in the world that everyone wants but no one eats.  When they bring that plate, we all wave our hand over the cookies until we 'feel' the fortune for us.

My fortune, back then, was "Good things will happen on December 19th."  I put a lot of hope in this fortune so, I opened my calendar on my phone and entered on the 19th of December, "Good things are happening today."  I even put a reminder notice for the 18th.

Yesterday, I got that reminder about today.  I had no idea what it meant.  I wracked my brain all afternoon about what was going to happen that I had forgotten about. Then it hit me!  The fortune cookie.

So...I'm all excited about the possibilities for today.

Not really.  It kind of freaked me out actually.  I told Shelbie about it and she just laughed..."Ya, don't hold your breath!"  That's kind of how I feel but what the heck...a girl can hope.

So, here's to good things happening today!


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Wednesday, December 16, 2015

To err is human...

To really screw things up requires Obamacare!

Today was just not a good day.  I had to laugh, I have a new visiting teacher who came this afternoon with the regular lady who comes.  I'm not sure she was primed as to what she was getting into.  She is new in our ward too.  She gave the lesson on compassion.  It was a good lesson but then she said, "Trials come every now and again..."  The phrase just struck me as a big joke.  I couldn't contain my laughter and I don't think she really appreciated my irreverence.  I looked at my visiting teacher who has been coming for the past couple of years and she was laughing too and then said, "Or, the trials just come one on top of the other."

Cue awkward moment....and...we're moving on.  Poor lady, I'm sure she will be headed straight to the powers that be and find a sweet, lovely, young mother to visit.

So, I've been getting an onslaught of medical bills lately; no surprise there.  But...the bills are a mess.  Nothing makes sense.  There are two that have been coming for three months and I have been ignoring them because I knew they were going to be a headache to deal with because they have Spencer as the guarantor and an insurance that we have never had.  One of those bills was for Sam's bone marrow biopsy back in the summer of 2014!  They are just now billing me!

But...it gets better...On that bill, the insurance we had last year, paid the bill in full and on time, then, this past June, they went back to the hospital and asked for their money back because they decided they didn't want to cover it after all!  The hospital gave it back to them!!  What the heck!  Still...we are 6 months past that action and I am just now finding out about it.  Then, over the three months this bill has been coming, they keep adding $300 to the balance.  They have no idea why they did that so that one, is being filed away until the billing department can get their act together.  Even they admitted that they didn't know what they were doing.  That instills a great deal of confidence!

I opened bill after bill.  This past August, all three kids had bone marrow biopsies.  I got the hospital bill for that and my insurance, though pre-authorized, has now denied covering anesthesia on two of the kids and will only pay for the biopsy part of the procedure, not the aspirate!  I don't even understand how they can do that.

One biopsy is $12,000.

Finally, The one hospital visit Spencer had in Utah that was supposedly in network was all denied by insurance- an ER visit to the tune of $6000.00- this was pre- Salmonella; a torn rotator cuff.

All of this on top of everything else.

I spent nearly three hours with hospitals, provider offices, insurance companies...yes, I meant to write that as plural because Obama dictates that all my kids have to have a different insurance company and plan!  Not joking.  Because of my income, he gets to say what kind of coverage we have.  I knew this was going to haunt me at some point and here we are!

Let's add up our medical spending since August shall we...

Plasma Transfusions-  $65,000
3 Bone marrow biopsies- $36,000
Salmonella Treatment- $13,000
3 ER visits and MRI for Shelbie's Stroke- $4000
1 Surgery/pathology for me- ? Haven't got the bill yet. :(

                   Total: $118,000.  And people wonder why I don't sleep at night.  I worry about the day when insurance decides they aren't going to take care of us. I guess I'm relieved that I am only stuck with 7 or $8000 for now but believe me...there's going to be some fight in me before I settle on paying this.

I have a pile of work ahead of me to figure out this billing mess.  Tomorrow, Shelbie will be in the hospital for her 12 hour marathon plasma transfusion so I won't have time to sort it out and Friday, I have to make up two days of work so I don't see it happening then either.  I don't know.  Nothing upsets me more than stuff like this.

Shelbie's heart has been out of rhythm all day today.  As life goes, buried in the medical bills was the final report from our Congenital Cardiologist visit back in October.  Shelbie has some pretty serious issues with her heart that I didn't know about prior to this visit.  I knew there were problems but not the extent.  I'm not going to worry her with it.  He wants us back in 3 months.  There is significant regurgitation of the tricuspid valve putting increased pressure in her heart and a larger AVM by her heart.  This makes the neurological event earlier this month, a little more frightening.

Then tonight, Sam told me he thinks he has pneumonia.  I suppose he could.  He has had it twice this year and both times, he called it.  I just thought he had a cold.  I can tell something is coming, he is pretty run down, his chest hurts, his ears are the darkest shade of red and even went to bed extremely early.

Nothing will surprise me anymore.  I will say this, even though I am bugged and upset and horrified at the mess I have to deal with, I know deep down that somehow this is all going to work out.  In fact, after I had a lengthy discussion with one hospital billing department.  I put my phone down and said a quick prayer..."You've got this figured out right?  I'm going to trust that you do!"  And with that...I went and got my  hair chopped off!

I can't wait to find out what adventures tomorrow holds for us.




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Tuesday, December 15, 2015

Full Tilt

On Friday, I was tired.
On Saturday, I was getting sick.
On Sunday, I was stuck in bed...full blown, thought I might rather die, Lupus attack.  My hair hurt.  I felt sorry for myself and began to wonder why?  Why now?  Why the week before Christmas when I have already wasted so much time in getting ready for Christmas?

And then...I thought...Why not?  I spent part of October, all of November and parts of December running ragged.  Nursing my fatigue with obscene amounts of chilled caffeine on ice and Lindor truffles.  I figured the sugar and chocolate and sugar would sustain me enough to make it through and I did...make it through.  Sadly, I'm still learning about the world of Lupus and learned the hard way that it will always win in times of stress, fatigue and poor diet.  So...Sunday I paid for my undoings.

On Monday, I resigned myself to being a sick person.  I dragged myself out of bed at the very last moment to show up to a house cleaning job.  From there I dragged myself to the hospital for Shelbie to have some treatment.  And, every intention within me, spoke of going to bed right after my evening job.

But...

Well, before the BUT...have you ever thought about an airplane?  When the wings are tilted down, it descends.  When the wings are tilted up, it rises.

I have thought that for most of this month, I have had my wings tilted down.  I've been descending into somewhere different than usually find myself this time of the month in past years.  Usually, around this time, I am knee deep in shortbread cookies, nanaimo bars, mint truffles and chocolate covered, caramel drizzled pretzels.  I have finished the bulk of shopping and I'm waiting for Christmas to come.  

Our reality this year...I haven't baked anything.  I haven't pulled out the chocolate, caramel or thought about truffles.  I haven't done much shopping for my kids or family.  I have scaled back, dramatically.  With all of the usual activities squelched for whatever reason, I thought I was failing at the Christmas spirit.

Then, last night, for Family Home Evening, we found ourselves walking around campus handing out surprise presents to college students embarking on finals.  It wasn't something I spent a lot of time planning and it isn't something we have done before but it seemed prompted, pressing and necessary.

Every Monday this month, instinctively, we have had a holy moment.  We have gotten beyond our troubles, ahead of them in fact, and with full tilt ahead, on the wings of the spirit, rose to the occasion.  There is something so uplifting to see another person smile.  To see another person feel like they were noticed, even if it was from a total stranger.  To see a simple, simple gift transform into something far greater than it's apparent value is magical.  Christmas is a magical and uplifting time!  It naturally brings out the best in the world but in a single person too.

Last night, I thought about the gift of the Savior; his birth.  Such a simple beginning with far reaching, far greater meaning than first assumptions.  His birth, his life and his ultimate sacrifice give tilt to the whys and hows.  It turns the trials into little triumphs, even if that is nothing more than doing something of worth instead of choosing to wallow.

So...from lessons learned on a Monday, we are full tilt ahead into the Christmas Season!

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Friday, December 11, 2015

Holding Space

Have you heard of the latest catch phrase 'holding space'?

A woman by the name of Heather Plett, describes it this way,

 "It means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control."

I have been thinking about the past week.  It's actually been a really hard one.  Living the chronic life brings interesting dynamics with it.  When a crisis hits, as a mom, my initial response is somewhat manic.  I show up emotionally, suited up for a fight.  I'm ready to carry the emotions of the child, the emotions of me, the dynamics we find with doctors and nurses, whoever crosses our path, I'm on my 'A' game.   I manage a hundred different things at once.  I do what needs to be done.  There are rare moments when fear and anxiety break through the tough facade but that is fleeting and only happens when hours of wakefulness turns into days.

It's not until the crisis is over or at least being managed that I fall apart.  In a big way.  The gusty winds of worry subside to a mere breeze.  Adrenaline dilly dallies along the course of your veins and it is a foreign feeling to not be racing alongside it.  Nothing is really better but its not worse either. Sometimes, there is only reason to rejoice in a satisfying outcome.

Sam's Make a Wish Trip- Florida 2013.  Meeting Mickey
But...

Without warning, a different worry seeps into the empty spaces, once filled with fight, and halts your life.  You are emotional, unkempt, messy, isolated, lonely and the list goes on.  You question everything- your purpose in life; the purpose of suffering.  You notice the moldy food collecting in the back of the fridge.  You realize you haven't entered a store in weeks.  You see the dust that settled quietly on every surface of the house.  You realize that time has escaped you. You feel aches and pains you never noticed before. You are tired, sad, angry and used up.  Sometimes, you are all of this at once.

Every time this scenario plays out, I am perplexed.

This time, I think I am understanding the meaning of this space; the empty places that whine for my attention.  For me, I feel like it is a tender mercy from God.  A time when he Holds Space for me to feel.  To feel grief; grief is an obstacle unless we work through it. To address things that I didn't have time to consider before.  To consider the most recent events, what I learned.  What I could do better the next time a trial strikes and without a doubt, I can feel the next one coming.  It's a time to evaluate the road I am on and how to make sense of it all.

I have found, that during this time, God is always quiet.  If I'm not careful, I can beset myself to being abandoned by Him but, He is quietly sitting beside me allowing all the feelings to bubble up no matter how ugly they may be.  He doesn't judge, He doesn't question, He doesn't take them away, He doesn't fix them, or me.  He lets it be.  He holds this space for me to gain some energy, find my footing of faith again.  He allows me to feel my lungs expanding in a deep breath I didn't experience for weeks as I stayed strong.  It's a time to be weak and okay with that.

Someday, I hope I feel okay with this part of the process.  It's one I'm never happy about.  The way my restless heart feels, is less than captivating.  For now, I am glad that God is one so good at holding a space for me to grow.

So, what's with the Mickey Mouse pictures?  As we headed out one morning to go to Universal Studios, we were told that Mickey was at Give Kids the World and having a private photo op with the kids.  Many wish kids and their families were lined up in this big auditorium for their moment on stage with Mickey.   While the kids got their picture taken by professional photographers and had 10 minutes to have fun with him, I stood at the back.  It was one of those moments when I was so overwhelmed to see my kids laughing.  Really laughing.  Like they didn't have a care in the world.  I realized how emotionally threadbare we had become.  I stood there in the dim lights just sobbing!   Somehow, Mickey noticed and motioned for me to come to him.  The organizers were trying to get the next family on stage but Mickey left the stage to come and get me. Everyone was confused.  He took my hand and walked me to the stage and there, in front of total strangers, held a space for me to fall into.  I have never cried so hard in my life.  It was completely unexpected and I just couldn't stop.  Many minutes passed before he let me go.  I will never forget that. It  hasn't happened to me since then.  As I walked back towards my kids, I looked around and not one parent had a dry eye.  It was a holy moment of holding space.


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Getting it together

It's been an interesting week of sorts.  Busy as usual.

Tuesday, we went back to the homeless shelter to drop off gifts to our new friend Carla.  I had called her just to remind her that we were coming.  She asked if we could meet her somewhere else instead so we met in a parking lot a few blocks away.  She was so happy but I have a feeling she is one of those people who just manages to smile regardless of the burdens she carries.

She had asked us to come to her apartment for tea after her class at the battered women's shelter but since I work nights, we had to decline.  We packed her car up with presents and gave her and the littles a hug.

As we drove off, both of my kids said, "Do you get the feeling she has her life together more than we do?"

Ya, I kind of did.  In fact, I was trying not to cry because in so many ways, she seemed much better off than us.  In a lot of ways, we are still clamoring to get our feet back under us.  At the end of the day, the image stuck in my mind is that moment when you hit an unseen patch of ice and are about to go down but you do everything in your power to stay upright?  Ya, that's about what life feels like...every day.

I did get Christmas shopping started and done and that feels a little better.  I haven't even thought about baking anything but I'm not really sure I care.

I'm not sure what to do to get things together again.  I have been in this Lupus flare all week and that is not helping matters.  I just can't escape the pain and inflammation and overwhelming fatigue!  Blah...


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Tuesday, December 8, 2015

Creating Christmas

Is it already December 8th?  It doesn't even feel like we are embarking upon the Christmas Season.  Last night, I heard an Evangelist Pastor give a sermon on Christ and Christmas and he said, "Christmas is coming at us fast!  Where is your spirit?"

His name was Elon.  He was addressing a room full of 30 or more homeless, almost homeless men and 3 or 4 women, a couple of small children, me, my kids and our new friend who has been struggling with loneliness and isolation.

Gosh...where was my spirit at?  It was a string of meaningful words.  He cautioned them that it is easy to get down when your situation is hard but they needed to lift themselves up in the redeeming spirit of Christ.  His sermon was about 15 minutes long, just before dinner was served to this hungry crowd.

I had had this family home evening activity planned for a few weeks.  We made a bunch of cookies and packaged them up and took them down to hand out to the men and women being served dinner at one of the soup kitchens.  It's one we go to frequently.  We have made a complete meal and served the men, three times before but with everything happening lately, I didn't quite have the energy or resources for a big meal to feed 50 or more, so cookies was our compromise.  They were thrilled with them though.  One man opened his bag and said, "These are real!  Homemade!"  I watched as he savored that first bite.

In through the door stumbled a young girl with two kids.  I thought they were two girls but the little one in the stroller was a boy even though he had on purple stretch pants and a pink sweat shirt, no shoes and no coat.  The little girl was 9 years old.  As I greeted the young mother, who was also missing a coat, she took one look at me and said, "I know you!!! I haven't seen you in so long!"

This girl did look familiar, or maybe it was just the power behind the thought that she knew me but even her name sounded familiar.  The name of her mom was familiar.  Her mom would have been about my age but she passed away earlier this year apparently.  She was happy and so excited to get a hot meal.  The kids were restless so Sam and Shelbie helped to settle them down during the sermon.  As people lined up to get their dinner, Shelbie went with the mom to help her dish up for the kids, Sam knelt down to help the little girl pass a level on a video game she was playing and my friend and I played peek a boo with the little boy.

As Carla ate, I made conversation with her.  I asked her if she was excited for Christmas?  "Oh Yes!"
"Have you been able to get some shopping done?" I asked.
"Not yet.  I applied for some grants so I can get my kids a blanket for Christmas and maybe a turkey so I'm really excited to hear if there is money leftover for my grant."

There is nothing like a homeless shelter to put your life into perspective and to prepare your family for the Spirit of Christmas.  All night, I thought about what that pastor said, where is your spirit?  This week, my spirit has been deflated a little.  I had a major Lupus attack on Sunday and ended up in the urgent care.  That carried into Monday and I had to cancel work and I was going to cancel our outing for family home evening.  I haven't really started shopping for my kids or anyone, because I've been waiting for some checks to come in.  I'm so tired and have a lot of big decisions to make so my spirit...is there but it's under a heap of worldly woes.

As we left, after hearing so many more stories of struggles from these homeless folks, my spirit felt lighter.  The pastor offered a prayer.  There was so much energy behind that prayer!  Even Shelbie commented on how much meaning and love she felt from that prayer because he just visited with God, he didn't get caught up in rehearsed words.  He said, "God, there are more problems than we can count in this room but we know you are bigger than any of them and in your way, you will strengthen these men and women to go forward with faith."

It was really the best way to spend a Monday night.  I got Carla's number because I can not deny the connection that was between us and she isn't going to have to wait to see if she gets a grant for some blankets.  When we got home, we decided to buy Carla Christmas.  I still had to work so Shelbie and Sam went to the store to buy some things for this sweet family, including the fleece blankets she needed.  We will be going back down tonight to meet Carla at the shelter and surprise her with a car full of love!  We are so excited!

We can buy Christmas...or we can create Christmas.  I am calling this year, Carla's Christmas.  There is no way this story ends here.  What a great season this is turning out to be.  Different than past years in many ways but better.

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Sunday, December 6, 2015

Our Prison



I saw this video posted a million times on FB over the past week and since it was about prison, I didn't watch it because I didn't think it was relevant to me. I did, however, end up watching it just because I really like the song.  It's not a popular Christmas song that makes no sense at all, like grandma getting run over by reindeer but it's one of my favorites and makes the most sense of all the Christmas songs out there!

I was actually moved when I watched this.  It was relevant!  I've never spent a day in prison but in some ways, I've spent an awful lot of time behind prison bars others have built for me and some time behind bars I placed myself.

I have had the privilege of spending more time than usual with my dear, sweet friend May.  If you want to read how we met 18 years ago...go HERE

The day before Thanksgiving, when the boys and I went over to try to get her van started, she was very hesitant about letting us take it to a shop to get repaired.  She is a hoarder and has schizophrenia so her reality is slightly different than mine. Her van is filled to the gills with things, mostly newspaper and fast food containers, even some dollar store trinkets but they are treasures to her.  She wanted to pay us for offering to help but I refused to take her money.  Instead she offered us some expired Papa John coupons which I gladly accepted.  It is always so tender to me, how innocent and happy she is.

By Monday, the apartment where she is staying complained about the dead van and told her she had to have it out by Tuesday.  She called me to see if the boys were still willing to help.  Spencer was gone but my Wasband was happy to help us.  I had to tell her that she had to let Sam drive her van behind my Wasband's truck so that he could control it better as it was being towed.  She was really nervous that Sam might steal her things.  I kept assuring her that he wouldn't touch anything.  She spent a good 15 minutes showing Sam where the steering wheel was, the windshield wipers, how to turn the key in the ignition.  She took inventory of her things, she checked her pockets, her two fanny packs, her three overstuffed, canvas bags.  She was scared, out of her element and anxious.  I put my arm around her and said, "May, I promise you that we are not going to hurt you, steal from you or take advantage of you."  She looked into my eyes and said, "Okay.  I'm just scared."

I felt so sad for her. She lives in this world that appears chaotic and disorganized but it is meticulously arranged with a system to protect her.  A prison of sorts.  She doesn't have the freedom, due to her illness to be anything other than this.

I have thought about my own existence, my own prison.  Are we really that much different from one another?  We all have our insecurities, our fears, even irrational fears.  We just want to feel a sense of security, belonging, and acceptance.

The world just doesn't cater to these basic needs anymore and does the world really even care?  We spend more time than we should judging one another, sizing people up, criticizing their perspective, and discounting their reality.  Compassion and empathy happens in spurts for most people, acutely.  Worse than that...we do it to ourselves.  The result is, we never live beyond the bars and boundaries that surround us.

I have seen this scenario play out in so many different ways this week, not just with my friend.  Even Spencer has struggled.  He knows deep down that he can't work and go to school full time but he has struggled to make the decision about what to do.  He doesn't want to be held hostage by his disease.  He wants to belong, grow, learn.  He wants the perfect picture of what a return missionary should do...go to school, plan a career, date, marry,  get a job.  Nowhere, in that great expectation is there room for chronic disease and daily illness.  It broke my heart when I heard him say..."I just need to take a semester off from school mom.  I'm sorry for being a screw-up."  I just hugged him and loved him.  Never have I thought he was a screw up.  He knows I don't buy into the perfect yardstick people often carry to measure success.

In the isolation and loneliness we all feel from time to time; in our private little cells where we retreat, there is a Savior.  No matter what we suffer with in this life.  No matter what our shortcomings are, however different our reality or perspective becomes, we are children of God.  We are all just trying to navigate our way back to our Heavenly home in a world that makes it nearly impossible to claim our royal birth.  I really hope that during this month, but always, we will see each other with forgiving, patient, compassionate eyes.  With the same loving eyes that our Father in Heaven and His Son Jesus Christ see us with.  That's my hope for me...I can do better.

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Friday, December 4, 2015

Positive

C-Diff is officially back.  That cultured out positive again today so here's to another $1200 in medication.  The cost of a food borne illness is pretty impressive.  The bills have started rolling in from our Utah adventures.  We saw so many doctors before anyone told us it was out of network.  This is my first year on Obamacare so I just assumed that since I am with the same plan I had, with basically the same company, Utah was covered like it use to be.  I was pretty much wrong.  Live and learn.

Here's a rough breakdown:
Medication: $3500
Doctors: $1700
Laboratory: $1800
3 ER visits, unnecessary scans: $3000
Hospital Stay: $4000

All this added to our $13,000+ bills for Shelbie in the month of November and it was a spendy month. It gives me great anxiety to open these bills and wait to hear what is going to be covered and what will not.  Obamacare has definitely complicated my life in so many ways. Just to put this in perspective, our medical bills in one month were more than half of my income- for the year.  Speechless.

I am happy with our ID doc here, he is not warm and fuzzy but he gets the job done.  He called in a prescription so I can save us another trip to a Utah Doctor.  The most impressive thing of all is that the Infectious Disease doc we saw in Utah when Spencer first got sick has been amazing.  He can't be our doctor because of insurance issues but he calls Spencer regularly from his personal cell phone just to make sure he is doing okay.  He told Spencer to call him anytime things got worse.  We won't do that because I would feel like we are taking advantage of him but I sure appreciate the concern he has taken even though he isn't making any money by doing so.  It's hard to find doctors that committed anymore.

Spencer starts his new job tomorrow.  He will be working at the ski hill and I am pretty impressed with the pay scale and benefits.  Like, super impressed and it isn't going to be a physical job so it will be a better fit for his health.  The hours are easier too.  In two months, if he meets all their goals, then they will offer him full medical, dental and optical. They also pay for his gas to get to work.  Never in my life have I had a job that offered benefits so this will make things a little easier for him living in another State when it comes to healthcare.

Cultures on E-coli and Salmonella will be back on Monday.  I'm crossing my fingers that he tests  negative.  If not, then it means we are looking at a chronic, rather than acute case which is just going to be bad news but we will wait and see.  I think Spencer is feeling a little depressed about his situation.  He is really tired of being so sick.  I don't blame him at all and I wish there was something, anything I could do to make it all better!

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Wednesday, December 2, 2015

Santa lives on

This year, we said goodbye to a lot of special people.  I would confidently say that this was a year of losses;  my grandma, my aunt and so many friends I had become close to.  One of our greatest losses was that of Santa...AKA Mike.

There will never be another man like Mike.  He was the town Santa but more importantly, he was our personal Santa.  He has been coming to our family for 20 years!  The kids believed in Santa much longer than the average kid, it was almost embarrassing.  Mike brought the spirit of Christ into our home year after year.  When the kids were in the hospital, Mike was there and sometimes, even dressed in his Santa suit.  

The past few weeks I have really been missing him.   This is first year, he won't be bounding through the front door with his jolly laugh and sparkly eyes.  I will admit, I found myself a little emotional a couple of weeks ago when I was looking ahead to December and what events we had planned.

Tonight, after dinner, Shelbie announced that she had a Christmas present for me to open.  The card she had written said, "Santa is still here!"  I immediately started crying...mostly because that's what I do these days...I just cry whenever I feel like it over anything I want...it's liberating!  Anyways, I couldn't even believe my eyes when I opened the bag!   A custom, handmade sculpture of Santa!  Our Santa!  Mike!  I was so overwhelmed.  The artist got every detail of him just right!

This is from 3 years ago.


It's perfect in every way!  I love it! It made for a sweet thing on a rough day.

Spencer is obviously not any better and again, we have the undesirable complications of being in a State that doesn't readily accept my insurance.  So, our ID doc here won't just treat Spencer for C-Diff even though I'm pretty sure that is what he has...we have to do more cultures.  The soonest Spencer will be able to start treatment is going to be Monday!  I'm so frustrated.  Again...no immune response or rather, still no immune response.  What a nightmare this is becoming.  To complicate matters, he starts his new job on Saturday.  I know, without question, he is going to put his job before his health.  It's just the way he is.  He will let himself down, before he lets anyone else down.  I already got the word from him tonight!

I met with my surgeon and got the bandages and dressing off.  Pathology was back and I have some tough choices to make regarding the next step in treatment.  I find myself in a complicated situation and I'm not exactly sure what I'm going to do.  I have to meet with another specialist tomorrow morning and maybe I will have more information to share after that, or be willing to share.  There will definitely be more surgery but to what extent, it's too soon to tell.  This is one of those moments, when I really don't want this to be part of my story.

I really hope that by tomorrow, the path I should take becomes more clear because right now, I'm just not sure.




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Tuesday, December 1, 2015

It's Back...

C- Diff is back.  Not officially but today was Spencer's last day on antibiotics for Salmonella and all the GI bleeding, nausea, vomiting and other unmentionables came back with a vengeance.  I will check in with our trusty Infectious Disease doc in the morning and see what we do next.

I have a feeling I will be taking another trip to Utah.  Spencer left his Vancomycin here because we thought we were done and at $1200 for a two week prescription, I'm not about to get a refill.  We still have a week's worth left.  With our luck, the doc will change the medication to Dificid which is even more money than Vanco.  Whatever...

Spencer is so funny...he never just calls and comes out with the news.  He warms up to bad news.

So, it went something like this..."Hey mom!  How was your day?"
"Pretty good.  How about your day?"
"It was good.  Just got done with my classes for the night and I"m headed back to my apartment."
"That's good!  What's on the schedule for tonight?"
"Oh, just homework I think.  I am going to go to bed early probably."
"That's a good idea.  How is the T-shirt business going?  Working on some more designs?"
"Ya and I have a photo shoot tomorrow with models and the designs I have so they will look professional.  Oh, and I was going to mention that I think I have C-diff again.  Oh, and we were robbed last night too.  So, I guess it was sort of a big day but tomorrow should be good."

I love how he sandwiches C-diff and getting robbed in between some photo shoot with models! Yes, you read that right, they were robbed.  Windows smashed out of the roommate's car, everything stolen.  It's a miracle they didn't touch Spencer's car that was full of electronics and what not because he got home from Idaho so late, he left a bunch of stuff in there.  Little tender mercies.

So...there we go.  Second verse, same as the first! Surprisingly, I have no emotion over this news tonight.  It is what it is.

I did get some news back from Cardiology on Spencer.  For the most part, structurally, his heart seems okay.  He has some leaky valves but nothing like Shelbie and Sam.  No extreme pressures like Sam so in comparison, he looks awesome...well, when you compare his heart to Sam's.  If you compare his heart to a healthy person, then it doesn't look so good maybe.  But for now, I am considering this to be good news.  This doesn't explain his electrical problems and arrhythmia but we'll figure that out...or not.

Tomorrow, I get stitches out!  Hooray for progress and I get pathology back on my surgery.  I am not feeling too worried which may or may not be a good thing.  I tend to be a poor judge when it comes to my own health.  Two weeks out and things are still kind of painful but I guess that is to be expected.

More news coming tomorrow...



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Monday, November 30, 2015

Outtakes

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

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

An outtake.  A do over...Try again.

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

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

I have invested my heart and soul into this new doctor.  I am so desperate for help.  My hopes were high.  By all accounts of our experience before meeting the doctor, it held a lot of promise.  The nurses were stellar and personable.  They were efficient and friendly and interested in Spencer.   The hospital was new, the clinic clean and peaceful.

The doctor came in and right away, I knew we were in trouble.  After doing this for 23 years, I have a feel for doctors.  He came in the room, no introductions and didn't even ask who we were.  He had obviously done his DC homework because he started right in with facts and cancer figures, telomere length studies and most of the other important details.  He kept rambling on and only after 10 minutes, asked why were there.  Not once in the 75 minute meeting did he refer to Spencer as anything but 'the boy'.  He spoke in third person like we were discussing a dog that wasn't in the room.

At some point, I probably checked out.  He kept asking the same question a dozen different ways and who knows what I was saying but communication wasn't happening.  Finally, Shelbie just put her hand up and said something...I don't even know what she said.  I was already frustrated, beaten down and bewildered.  I felt stupid, unprepared and like I had no clue what was happening to my kids.

Doctors always seem to come into these new appointments with and extra amount of intellectual confidence, intimidation and inflated egos.  They always seem to have a point to prove like they are God or something.  He was definitely smart but what is the point to that if they can't communicate or listen?  About halfway through, they realize that they have no idea what they are talking about, that they are dealing with an overwhelming situation and then we are just left with an ego and any kind of blame they can put on me to make them look better.

That's exactly what happened as the dreadful appointment went on. I can tell I'm wearing down because I could seriously picture myself storming out there in the biggest hissy fit known to mankind with guns blazing...(figuratively speaking of course)  Instead, I just sat there trying to keep myself from having a stroke and an out of body experience.

He said, "How am I suppose to take care of these kids when there are no standards of care?  If they had a risk of breast cancer, the cancer association has clearly outlined what the screening consists of and what you do when a person gets breast cancer.  With this there are no standards.  It's all hypothetical.  Some doctor or two call themselves experts in DC and they call the shots.  It's really hard to do my job under those circumstances."

What do you say to that?  Really.  Welcome to my world of orphan disease.  It's kind of hard to do my job too when doctors only want the easy cases.  The cases where there are a million or more studies and they don't have to research or look any farther than Web MD to know how to care for their patients.  We have no standards either.  It's a mess.  We constantly live in a mess.

We finally left without any answers.  The fact that Spencer is STILL sick and just finished another two weeks of antibiotics was not an important fact to him.  Toxic neutrophils were not important to him or the monocytosis or the abnormal lymphocytes.  The boy has not one normal blood cell to which he agreed and also acknowledged that the fact Spencer has never had a fever through all this is proof that his white cells are shot!  Not doing anything.

I got an earful from Shelbie and Spencer when we got to the car.  They were frustrated but not in an angry way...worse...sarcasm and humor which almost always hurts more than anger.  Spencer said, "I have an idea if anyone cares to hear what the boy thinks...let's just get a head start on Hospice so that they can at least keep me comfortable."

Shelbie actually was pretty upset.  It's just so sad that these kids really feel like they are dying and no one can give them one bit of hope that they are going to be okay.   The truth is, I don't think we will ever need a hematologist.  Even if we are faced with Myelodysplasia, leukemia or aplastic anemia my kids are no longer eligible for a bone marrow transplant.  They don't have good enough heart or lung function to allow them to survive the chemotherapy regimens needed prior to transplant.  So, maybe we are just wasting time and resources.

One thing they both verbalized was that they tell doctors over and over about a symptom they are having and the doctor says things like, "Well, you look good enough."  or "The CBC is fine."  They completely discount what they are feeling and gloss over it.

It was a rough day.  We need a do over.   I'm just not sure what the do over would consist of.  I have a kid still sick with Salmonella, a kid with lesions of some sort all over the front of her brain and a kid barely hanging in there.

All the way home from Pocatello, I was thinking about something our surgeon friend told me when he and his wife came up to the hospital earlier this month to visit Spencer.  He said, "Ya know Kath, you can run as fast as you can but at some point, this disease is going to outrun you.  Then what?  How are you going to handle that?  What is your plan?  You need to be able to let go."

Maybe it's time to stop running.  I don't know.  At some point, maybe trying to get answers does more harm than good.  Aren't we hard wired to fight? Some days, I feel like we are being held in contempt by this stupid disease.  I don't have any answers tonight.  I feel completely let down.  Everyone seems to move on from our problems so easily and quickly but we haven't moved on.  We stay stuck and I just don't know how to get unstuck tonight.
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Sunday, November 29, 2015

Thanksgiving

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

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

We had a brunch at 11 which consisted of crepes, a variety of fresh fruits, Nutella, Whipped Cream, veggie trays, fresh spinach artichoke dip, cheese and crackers...the list goes on and grazing happened until dinner at 5.

I know some people complain about Thanksgiving getting lost with Christmas coming too soon but I think Thanksgiving is the holiday that kicks off Christmas.  It's a great way to start the Christmas season with gratitude for our Saviour, so, I always have the house decorated for Thanksgiving. Decorations are pretty simple since my house is so tiny but it's just enough.



Christmas tree and mantel

Nativity

My favorite thing for the holidays is a poinsettia in a glass vase.  There is something about seeing the dirt, the roots...I love! 

Brunch- this is only one counter full of food.  My Wasband and his nephew joined us and it made for a good day.  We also had our neighbors over for brunch since they had to stay home at the last minute due to weather, so, it was a good crowd of mouths to feed. 

Sleigh Ride.  The kids and I went out to a ranch that was offering free sleigh rides with some canned food donations.  It was freezing but so peaceful to be with my kids.
 
It was a good few days together as a family.  Shelbie had so many photo shoots prior to Thanksgiving, she was pretty exhausted and by Saturday her blood pressure was crazy and her heart rate even stranger so she struggled.  Spencer wanted to go to the mall Saturday, so we had to rent a wheelchair for Shelbie.  I hate that but it's becoming more common.   I even thought I should probably just buy one because it happens so much.  Spencer kept asking if they could switch because he is still pretty weak.  Sometimes, I just laugh at how crazy things can get but, it's life.

All in all, we survived and it was good.


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Wednesday, November 25, 2015

With Gratitude

Happy Thanksgiving.

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

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

The second class is usually something in the arena of writing or something creative.  This year, I have been interested in art journaling, hand lettering, sketching...so this taxonomy class seemed like a simple place to start.  These are quick, rough, very rough sketches of my list of Blessings; a short smattering of what I am thankful for today.

1.  My kids.  They are the reason I do what I do.  They are the reason I bother to get out of bed everyday.  They are the reason for everything.  They are my greatest treasure in life.  They are my joy, my happy place, my tears, my love, they keep the rhythm of my heart. Every decision, every act, every hope is with them in the front of my mind.

 2. Another Day.  It has become apparent, this year, more than any other year that there are no promises held for tomorrow.  Only today.  Today is one more day I am blessed to have my kids in my life, in this life.  At the end of the day, we are settled in finding the little things to be happy about.  Sometimes, it's just that we made it through the day, white knuckles and all but we made it through together.
 3. Family.  I am grateful that my family hangs in there with me.  I am a terrible communicator.  I don't call as often as I should.  I keep them at arms length most of the time because I don't want them to be weighed down by the drama of our life. It's hard when my life seems stuck and theirs is moving onward.  It's hard for all of us.  I know they struggle to share their good news as much as I struggle to share my bad.  I know this has caused them heartache and hurt. I know I could be better at sharing my life with them. I love them.  I remember my parents having to drag information from me when I was younger.  I just keep it all inside.  Nothing much has changed.  I know it's frustrating to have a kid like me because I have a kid like me!  But, when the rubber meets the road, they are there.  We are there for each other, our flaws, our shortcomings, our big hearts!  Our big hearts show up...always!   In every possible way.  We aren't perfect but we stick together.  We get each other through the hard times and there has been no shortage of hard times for all of us this year!
4. My Soft Place To Land.  I have spent a lot of time on this couch in the past.  It's my soft place to land once a week.  It's the place I go to set down my luggage of life, the burdens I shoulder.  I unpack for an hour or so, take a look at all the troubles I've collected and in that short time, my story is witnessed.  It's real.  Being a single mom is hard.  I don't have the luxury of a bad day.  I can't be a mess of emotions in front of my kids.  I not only set the tone for the day but for their life.  My attitude determines their attitude. They count on me to be strong, settled, happy, confident and hopeful.  It is hard. Some days, I feel like I should get a Tony award for my stellar performance! At the end of the day, there isn't anyone I can turn to to decompress, share a worry or two; it's just me.  All the time.  I'm blessed to have a doctor who just lets me be real.  Lately, a real mess.  He truly has the most compassionate heart.  There were three good years he kept me alive in a literal sense.  I owe him so much.  Without a doubt, he was chosen by my loving Father in Heaven to help me get through these hard things. 
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5.  Friends I've never met.  I have never been one to have a lot of friends, even growing up.  I have discovered the blessings that can come from friends I have never met.  It's just a handful, but these women pray endlessly for my kids and myself.  I pray for theirs as well.  When I say I'm tired, they know that kind of tired.  They never cease to amaze me.  I don't even really know how we met, it just seemed to happen and they are a blessing.

 6.  The kindness of strangers.  The world seems like such a crazy, mixed up mess, filled with tragedy we bring on ourselves.  I'm always amazed when I witness the kindness of strangers, either to me or to someone around me.  There is no shortage.  Lately, the strangers have come once hearing the story of Spencer this month.  Spencer and I have received some of the most beautiful letters of hope from several families he served in his mission.  It amazes me that they would take the time to write us.  They are little postcards from Heaven we hold close to our hearts.  Their reaching is felt.  They make me want to be better and share more empathy and compassion.
 7.  Losing our troubles in service.  We would be in a sad state of affairs if it wasn't for the lessons I learned early in life to serve.  There was never a Christmas that focused on getting.  It was always about giving.  The one thing I will always appreciate about my family life and never forget is the feeling of love and peace I had when I saw my dad give a stranger some money, or dropping boxes of presents off for people who had less than us and my mom baking endlessly for neighbors, sick people, sad people, needy people. The list is long of lessons I learned on service.  It has been the one thing that has saved my kids and myself from a life of feeling sorry for ourselves.  I use it as a tool to keep them on track spiritually, physically and mentally.  You can not have a bitter, hard heart if you are doing something for others, no matter how hard your own life is.  I want them to be weary in well doing, not weary in doing only for themselves.   Yesterday, the boys and I went to help our homeless friend try to get her car started.  I know Spencer wasn't feeling well and Sam could have been doing a million other things but they were happy to help.  They went the extra mile for her.  Life was good yesterday.  Service is the law of abundance in action.
 8.  Defining Moments.  Life has been hard but it is in those hard moments, when we can not do one thing for ourselves, that we have come to know the grace and mercy of a loving Father in Heaven.  Its in the trials where we really meet our maker.  When we receive with gratitude His good gifts.  His kindness and understanding.  There is so much holiness in the moments that define us.
 9. Testimony.  I am blessed to have  testimony of the Gospel of Jesus Christ.  I know that in the end, everything will work out.  I know that God hasn't brought us this far to drop us now.  I am grateful for this knowledge I have and the understanding that this life, is the time to prepare to meet God. I'm learning to view life with my spiritual eyes, more than with my mortal, short sighted vision.  It is the gospel that keeps me moving and when I hear the words of the prophet, I am strengthened.  I know that prayer changes things.  I have so many friends each representing different religions.  It makes no difference to me what religion a person chooses to practice, it is prayer that binds us together, its the spirit and spirituality that makes us one.  It's a combined faith and belief in God that matters to me.
So, I could go on but this is a good start.  I am blessed.  We are blessed.  We have a shortage of so many things in terms of the worldly goods and health but even still, we are so blessed; in amazing ways.  You don't have to look far to see others with so many more hardships and trials.  It makes me feel guilty at times that we are doing so well.

Happy Thanksgiving.  I hope it is a reflective and peaceful day of gratitude.

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