Monday, July 30, 2018

Monterey Bay

Hello from Monterey Bay, California where it's a smoky, 50 degrees.  Where kids play, and laugh and watch Seagulls soak their beaks in ranch dressing and swallow french fries whole, from the outdoor patio at Johnny Rockets and he's the happiest bird around. Where moms sit under the Cypress trees and watch the fun unfold.  Where moments happen on their own and talks of Christ, and hope and faith.  Memories are under construction and we reach for each other's heart and connect in ways you just simply can't do on any given day, even in the lazy warmth of a Summer day back home.   

This is a no, NO kind of trip.  No one is allowed to say no.  We say yes.  There is no schedule, no real plan, no expectations.  Without a doubt, we despair and get frustrated when what we expect doesn't meet our reality so this trip, no expectations and it's been great.  It takes a little effort because I was expecting an 80 degree beach day.  The 10 day forecast last week told me to expect that but it was 50 degrees with a chilly wind.  Once I could wrap my mind around the fact that no matter how much I wanted a warm beach, we weren't going to get it, the day was perfect in every way!

The kids loved playing at the beach stacking rocks in impossible ways.  So many life lessons learned and observed.  All of my kids are amazing photographers, it's kind of funny.  Here are a series of our top favorites from the day from each of the kids.  I don't have many from Spencer because he is on a film and digital camera...no phone. 

Spencer.

Sam

Sam and Shelbie proud of this rock stack they did.  We could seriously do this all day. 

My besties...Never have I loved anything more! 

Another rock stack.  It's our goal to stack something every day of this trip.  We'll see how it goes. 

Trolley Ride. 

Love this picture of Shelbie watching the otters.

Seal watching

Spencer in his element

Sam


Saturday, July 28, 2018

What a day

I don't even have to describe the kind of day you have when everything goes wrong.  We all have them.  I woke up Friday morning, with a definite plan, a tight schedule, connections to make and destinations to arrive at. 

None of that happened.  Nothing.  I'm suppose to be typing this from Reno, Nevada but instead we are in a shabby, last minute hotel, in the earliest hours of Saturday in Winnemucca.  Every time Sam and I were ready to leave on our trip, something would go wrong or need my attention.  

When I pulled in the driveway after running last minute errands, my driveway flooded with people in the neighborhood who needed to talk to me.  One neighbor was sick so I dropped off a treat for them.  One is moving so we said our last goodbyes.  One wandered over to see why I have so many people staying at my house.  (I've had my nieces and nephews and their friends staying with us all week and hanging around to babysit the house while we are gone.)

It took Sam and I nearly an hour to get the roof top carrier figured out.  It was incredibly irritating and I could feel my blood pressure rising.  

When we finally got on the road, we had to pull over twice to tighten and fix the roof top carrier.  I was so exasperated, I pulled over and we yanked it off and threw all our stuff in the back seat and got back on the road.  Spencer had taken the train to Salt Lake so I could just pick him up at the airport and jump on I-80.  We were already so late, I was worried he would be waiting forever for us to show up.  

Before we got back on the highway for a third time, I turned to Sam and I said, "Okay, this is not how the day is going to go.  We are not going to spend one more second being frustrated.  We are just going to go with whatever comes up.  I think people call it an ADVENTURE...We will adventure this afternoon."  I called Spencer and apologized but explained to him that a vacation is suppose to be restful and enjoyable, not strung out and stressed, which is what I was.  He was awesome and said, "Just whenever you get here is fine!  I like adventures." 

But...what a day it was.  It was just perfect in every way.  It was the kind of day when I knew, without a doubt that there is a God in Heaven and he knows where in the world we are and we haven't been far from Him.  

About two hours into our trip, my neighbor called and said, "Hey, A is on her way to Utah and the car just broke down.   She is at the Devil's Creek exit."  I was literally a mile from the Devil's Creek exit!!  I pulled off the highway and there they were, A and their 7 year old son, alone in the middle of nowhere!  It was 103 degrees.  I had their son go back to my car with Sam, where it was cool. My friend was on the phone to her insurance company arranging for a tow and I was checking the oil and fluid levels.   

She actually tried starting the car again and it started right up but the check engine light was on.  We were just 7 miles from a small town so I followed behind her to a repair shop.  We moved all their luggage into my very tiny car, and after about an hour or so, were back on the road to Salt Lake.  It was such a great trip.  We had so much to talk about and it felt really good to connect with her in ways we haven't been able to before, with our busy schedules. 

Her dad met us at the airport and drove up right behind me at the exact moment I pulled up to pick up Spencer.  We shuffled the luggage around and said goodbye.  Without a doubt in my mind, the day unfolded in exactly the way it was intended to.  If anything had of gone right today, I wouldn't have been able to serve her the way we did.  Spencer didn't mind the extra wait at all.

It made all the difference in the world to change our perspective and just roll with the moments. 

The boys and I made a lengthy stop at the Salt Flats, just outside of Wendover, NV.  It was my first time there and so amazing!  Spencer brought all his camera gear and took some amazing photos and video of Sam doing flips on the Salt Flats.  I can't wait until he downloads  them all and I can post them here.

As I watched them having fun, I thought of how my kids really are my best friends.  I thought of how everything around us right now is hard and worrisome, yet in spite of that, we had this beautiful day of knowing that God was aware of us, of my friend in her broken down car, of our need to be connected to each other; to Him.  We had so much time to talk and catch up with each other, and have deep and insightful conversations.  Many times, I heard the boys say, "Man, I wish Shelbie was here with us!"  We really are a team.  I'm glad that our trials and struggles have knit us together.  I don't think that would have happened quite the same, if life had been different for us.  I felt overwhelmingly blessed and content with my life. 

These boys of mine love each other and take such good care of Shelbie and I. We are lucky to have them in our life.



Since we have decided to make this trip a grand adventure, Spencer challenged us to lick the salt...We all did it!!  I only got proof of Sam but I'll post the picture Spencer took of me.  This was some adventure for a germ-a-phob such as myself!  

Selfie at the Salt Flats.

Friday, July 27, 2018

Today, we adventure.

Well, today we adventure...

I don't realize how small and minute my world has become until I stare down a 15 hour road trip to a State I haven't been to since I was 8 ish or so.  I don't remember how old I was really.  Sadly, I only really remember the horrific moments of that trip to Disneyland we took as a family. 

I remember us four kids, piling into the back of an old, green Ford pick up truck.  It wasn't fancy at all, or maybe it was for something born of the 70's.  Now, when I say, we piled into the back of the truck, I mean, the bed of the truck.  Not to be confused with the comfortable, 'King Cab' part of the truck, which actually wasn't part of this model.  My dad, had built up a plywood platform and my mom, sewed a yellow gingham cover for the foam that laid on top.   Of course, there was a cover over the bed of the truck to protect us from the scorching, desert heat as we neared the Utah, Nevada border.  I guess, I'd like to ask why the truck was the better option than the boat of a Buick we also owned.  We were not a poor family growing up, at least, they never really made us think we were poor.  No, I'm pretty sure we weren't poor.  I mean, we were going to Disneyland!  Hmm...I'll have to nail down that part of the family history.  Anyways...

"Don't worry," My dad said.  "It'll be fun!" My Mom said. "We'll drive through the desert at night so it won't be so hot!" My dad said.

Let's pause the story here and keep in mind, we were driving from Calgary...Alberta...Canada....to Disneyland...in the back of an old, green pick up truck, in the 1970's. No seat belts.  No air conditioning.  Did I mention no seat belts; just us kids being tossed around on a make shift bed in the back of a truck with a flimsy, plastic cover protecting us from the elements.

It was hot.  It was uncomfortable.  It was miserable. It was August.  My parents, riding in the cab of the truck, had a swamp cooler.   I have no idea where they obtained a swamp cooler for trucks; from what I remember, it seemed like a terrible thrift store idea.  It was much like computers of the 70's, big, bulky and took up the entire cab of the truck.  It sat on the 'hump' of the floor, between the stick shift and the passenger side.  They filled it with ice and a loud fan, spewed out some cool-ish air.  I believe it worked great if you were sitting beside it, but how would I know?  We were being thrown around the bed of the truck, on a piece of gingham foam, with just the 110 degree air that leaked through the cover to keep us cool as we made our way to the happiest place on earth.  I just remember thinking, this better darn well be the happiest place, as promised.

Every so often, when we felt like we might pass out, we would use our little dehydrated fingers to pry the window open between the cab and the back to obtain important information like, "ARE WE THERE YET??!!!  It's so hot back here."  And the response was always, "NO!  Play the license plate game and shut the window you're letting the cold air out!"  Our slippery, little sweaty fingers would try to push the stiff window closed and we would lay back down and drink our salty tears.

So, anyways, that's how I remember my last trip to California! It was awesome.  I should also reminisce about how I screamed until I broke every blood vessel in my head after being convinced to ride the Matterhorn!  I believe there was puking in a nearby garbage can and we topped off the trip with some kid from a family we were traveling with, getting lost for a few hours and all the adults in a panic.  It was some amazing trip, the happiest.  I came home with PTSD as a souvenir.

When people today, ask me how I became so strong and resilient...I actually think it's because I was raised in the 70's. and took a family road trip to Disneyland in August.  There were no good ideas that came from the 70's.  We were all just flying by the seat of our bell bottom pants- no rules, no boundaries, just trying to stay alive.

I think our trip, 40 years later isn't going to be much different.  I had to get a roof rack because my cargo space is literally 18" deep.  They don't make roof racks for clown cars per se, but I did find one that suctions on to the roof and then straps around the doors, to the interior of the car, safely securing it in place!  Sounds like a good idea, except...we are going to have black straps stretching across our faces for the 15 hour drive!  I like to think of it as a safety device. If I take some clothes pins, we can hang our snacks from the strap, just in front of our hungry face...like a feed bag!  Someday, my kids will write about just how awesome our one and only family vacation was.  I can't wait until they see the 2 star hotel I got for $30!!

Anyways...

 If for some reason, I have to slam on the brakes, the strap will catch our necks and keep us from being thrown around the car.  It may decapitate us, but at least our heads won't be far from our bodies which will remain securely fastened to our seats with seat belts!! See, a luxury not from the 70's.

So, I'm super excited to get on the road.  We have to make a 4 hour detour to pick up Spencer but that's okay, the things we do for love.  It'll be fun and big adventure! 

Did I mention that the surgeon called me last night?  Yes, he wants to see Shelbie next Wednesday.  This is moving much faster than I thought it would.  I postponed it for a week.  Is that bad?  If Shelbie has cancer, it will be a long time before I forgive myself for putting her health off in lieu of a vacation.  I did ask her what she wanted to do and she wants to wait a week too.  This new doctor is the top senior surgeon at the University of Utah Medical Center.  He has enlisted 2 colleagues who are also at the top of their game and they have already had several meetings about the best way to handle this very complicated situation.   There is a small chance, they will be able to drop a scope down her throat and access one tumor that is sitting at the base of her lungs. 

Shelbie is struggling with her epilepsy and other stuff so I am anxious to get to her and have Spencer give her a blessing.  There are so many reasons why we shouldn't be going to California in light of everything going on and only one good reason to go...this family needs an adventure.  That's the one reason why we are going to stick to our plan.

One thing I've learned is,you make your choice, pray like crazy and don't look back and that is what we will do.  We are going to adventure together, just like we've always done, through good or bad...even scorching desert heat!

Thursday, July 26, 2018

Not the intended outcome

"Well, this is, unfortunately, not the intended outcome."

The whole visit took under 5 minutes.  I mean, one look at my wrist and you know, things have gone awry, so the PA wasn't wrong.  I actually appreciated that he was straightforward, honest and didn't waste my time with sugar coated excuses.

I have what is called 'Neoplasm of unspecified behavior of bone and soft tissue.'  Basically, my body is going rogue.  A neoplasm is an abnormal growth of tissue and cells due to some form of mutation.  Thank you, Ankylosing Spondylitis.   That explains why I am in so much more pain than what I was in, prior to surgery. Heaven help me if I need surgery on some important organ, I'll likely turn into the Elephant Man.  At any rate,  I have to go to Occupational Therapy for a several weeks and if in 4 weeks, things are not improving, I'll probably be headed back to surgery for something a little more complex.

These are the times when I look back and wonder if I should have messed with it in the first place.  Doubt and second guesses are so easy to beat yourself up with.  I don't know.  I don't think I had much choice since I was losing my mobility to do the things I needed to do and the disease process was destroying the nerves as well as the joint.

I was really hoping I could have started my injections by now for AS but my insurance company has denied three different medications on three different occasions.  There are only two more options left for me but they are more expensive and require me to be in an infusion center a couple of times a month. I'm quite certain if my insurance company denied the less expensive drugs, they won't be on board for anything more, and I have already made my decision on that, so it seems, that life will go on with pain as my ever faithful friend.

In other brief news, Shelbie is managing the news of surgery much better.  She is a trooper.  We have worked hard on keeping our perspective, living in the moment and taking it as it comes.  We are farrrrrrr from perfect in these pursuits but they are ever in our minds and we try.

Tuesday, July 24, 2018

My Web of Lies

I don't lie all the time, but when I do...It doesn't seem to end well for me!

I got a call last Friday from our Oncologist.  It was late in the day and I was busy.  He called a second time and I didn't want to talk to him.  I figured he was just calling to let me know everything turned out fine with Shelbie's follow up scans.  On the third ring, close to 9 Friday night, I answered when he called again.

It was all so odd to be talking to a busy doctor on a Friday night just to tell me everything was fine.  Except, it wasn't fine.  The plan we had decided upon three months ago, was that we would re-scan and if the tumors were stable or smaller, we would not do anything but wait another 6-9 months to scan again and just keep an eye on things.  If by chance, in the three months, the tumors had grown, we would biopsy them.

The tumors have grown. I can hardly believe it. I asked our Doctor if we could just wait on surgery for two weeks.

This weekend, the kids and I are going on our first ever vacation that doesn't involve a hospital, a doctor or any purpose that has to do with their disease. Or my usual cop out, of visiting family and calling it a vacation.

Anyways...back to the lie.

I explained to our doctor that this vacation was really important to the kids and I didn't want this bad news casting a cloud over our trip.  He agreed that we needed this time to have fun and thought that waiting until we get back would be fine.  He has already been in conference with the top senior surgeon at Huntsman Cancer Center.  He has reviewed all the scans from 2016 to now, and will be doing the very precarious surgery.  He has yet to decide which tumor he will try to remove.  We should hear from him soon after we get home.  I also asked our doctor not to contact Shelbie because I really wanted to keep this information from the kids until we got home.

Well, unfortunately, Shelbie received an email tonight and saw the test results and the notes from the radiologist.  She flew out to California this morning to be with her best friend who is preparing to get married this weekend, so she's not even home!  She called me in sobbing, terrible, sad tears, just shortly after landing in Sacramento.  Of course, I had to tell her the truth and apologize for keeping it from her.

The sad part is, I'm not there to console her and she is upset partly because of me. I was doing fine with the news myself, the past few days, until I heard her crying and then it all became so real and painful to me.

The timing is terrible in so many ways.  I have been digging in my heels about going on this trip.  It just seems too expensive, too complicated to get work off, too exhausting and too riddled with 'what ifs.'  What if someone gets sick?  What if something happens to us...What if...

A couple of weeks ago, Shelbie finally interrupted my humming and hawing and said, "Mom, please say we can do this.  This is really important to me that we are together for a vacation. We don't have to spend any money doing anything, we can just look at the sights.  This might be the last time we are all together doing something fun.  One of us might die this coming year.  Please?!"

These are the hard conversations we have at times around here.  I couldn't let her down and nothing makes me happier than seeing my kids laughing and playing. So, the boys and I will meet her this weekend and we will stay for a week.   She has planned the entire trip and a little something for everyone.  Spencer volunteered to make a family movie of our fun and Sam and I just get to show up.

Now, we have to take this baggage of surgery and tumors and cancer scares and chronic illness and this stupid disease with us.  The one thing I have prayed over and over we could avoid dragging along...for just 5 days but we couldn't even have 5 days without a care. Oh how I hope Shelbie's feeling about this trip doesn't come true.  I hope this isn't the last great family vacation.

It's a terrible feeling to be forced into facing reality.

Sunday, July 22, 2018

A Know It All

Do you ever get to the point in life where living the Gospel is like ground hog day; the same day over and over?  Yep, life is hard.  I know that.  I know it all!  I know that the trials are never ending, at least for us.  I know that I need to have Faith.  I know that I need to stop worrying and complaining. I know the Primary answers.

I guess you could say, I'm a know it all!

But then...you have a visit with your 20 year old child and realize...I know nothing!

As I was getting dinner ready, I called Sam in and said, "Talk to me.  Tell me about your life this week.  Tell me what your mind is troubled about, the little victories and blessings you felt this week."

"Mom.  You make me talk to you all the time.  I think we just had a conversation like this.  The one where you told me I need to figure my life out."

"Right.  But this is a different conversation and your mind has traveled a million miles since the last conversation we had a couple of days ago."

"Okay." He boldly stated, and I knew what would come out of his mouth next would be riveting...and it was.  "You know when I was out till almost 3 am last week, when I was out on the driveway talking to my friend K?  Well, we talked a lot about God and about life."  'K' is a friend I didn't know he had, who just recently returned from serving a full time mission for the church. I don't think they did much together prior to his mission, K was into competitive jump rope and tumbling and Sam was on the Parkour scene.

He went on, "Did you know we are faced with roughly 35,000 decisions in a single day?  From big decisions, to little ones, we hardly know we are facing.  It's almost as if God wanted us to screw up. How can he expect us to make the right choice 35,000 times?  Every choice leads to more choices and the choices we can make are infinite but somehow, they all lead to the same place...back to God. So, he must have things figured out.  Do you think he knows what choices we are going to make?"

Ahh...such a big question.

"Ya know...I don't think he knows what choices we are going to make because agency is so important to him, but I think he trusts us to make the right one.  You're right, how can we possibly get 35,000 choices right in a day?  He doesn't expect us to, but with every choice we make for good, or for bad and every choice everyone else around us makes, for good or for bad that affects us- He is already working on a solution, an answer, a way.  He does that through the Atonement and Jesus Christ.  All he asks of us is to be as faithful as we can.  To correct our course when it seems we have managed to stray.  Maybe, he gives us 35,000 chances to remember that we can't do this mortality gig without Him!"

Of course, it was a conversation that went on through dinner and it was great.  It got me thinking a lot too.

God knows what he is doing even when we have no clue what we are doing with ourselves.  He can accomplish more on our behalf than we can ever imagine if we stop negotiating with him for what WE think is best. We may think we know it all, but we have no clue.  Life is many things, but above all, it's about trust in our Eternal Father.

I read, several months ago this quote...though I am not sure who said it.

     "To recognize the hand of the Lord in your life, and to accept His will without complaint does not immediately eliminate the struggles that will come for your growth.  But I witness that it is the best way there is for you to find strength and understanding.  It will free you from the dead ends of your own reasoning.  It will allow your life to become a productive, meaningful experience when otherwise, you may not know how to go on."

What a timely message for me...for Sam.  We all feel a little torn down and defeated, with nothing but dead ends in the dim light. I'm pretty sure God's just working on the plans for a great remodeling of our spiritual homes, here on earth.

Saturday, July 21, 2018

Making the Cut

It's been a challenge for me to take my doctor's advice about figuring out a different way to do things.  I'm terrible at taking care of myself and usually, when I hear a doctor tell me I have too much stress, I tell them I'm fine.  This time was different though.  I think because I actually feel the effects of the past two years on me.  Through my tears, I said, "Can you fix me?" and he looked at me in the most tender way and said, "No.  I can't.  You have to fix yourself." I knew he was right.

He gave me some advice- "You can't do this alone anymore.  You need to find a way to share the load and you need to involve your kids."

That's was the hardest pill of all to swallow.  I have spent countless hours thinking about this.  Of course the obvious thing would be to get married again...and here's a little interesting fact of mystery I bet you didn't know.

I've had 4 opportunities in the past 12 months to get married! A few of the men had a lot of money. I'm sure this is a shocking piece of information, since no one even thinks I date.  I don't really, but it's true.  They were all wrong for me.  Each one grilled me about how I would take care of them.  Not one of them ever told me how they would care for me...not take care of me, just treat me as a kind, human being; not once, but they were very concerned with how much I would dote on them and none of them could understand my kids and the relationship I have with them, let alone wrap their mind around our life in the chronic lane.  I actually had one man say, "If you are always taking care of them, when would you have time to take care of me?"  HUH? Needless to say, things didn't go very far.

Basically...marriage doesn't seem to be the answer at least from the dating pool of options around here.

There isn't anything physically that I really need to do in order to share the load.  My kids aren't little so it's not like I need childcare or meals.  Honestly, no one around here is eating much so cooking isn't really a burden.  It's more the emotional things that are tough. I carry a lot of overwhelming things around with me.

So, this week, as I cut things and people from my life, it's interesting how my brain determines how to make the cut.  This is the statement I have ended up saying to myself..
"I know I'm suppose to do _________ but I'm going to do __________ instead."  It's really been helpful in changing my focus and level of stress.  I can't change the kids' health, but I can change other things, so that's what I'm trying to do.  Have you ever really tried to consciously, manage the stress in your life?

I can tell managing my stress, is going to be the hardest thing I've done in my life and for myself.

Friday, July 20, 2018

Hello...

I'm back!

I've had to step away from a few things in life and writing took a hit.

Here's what I've learned in the past two weeks, stress kills you! 

I've always thought that was a bunch of nonsense because let's face it, life is stressful, big whoop-di-do.  If you just get up and get going, you'll be fine. 

Here's another lesson I learned the past two weeks, that's not how it works. 

I've been slammed with two weeks of feeling incredibly terrible.  So, terrible in fact, Sam came into my room yesterday where I was taking my afternoon nap and said, "Mom!! Get up!  What is wrong with you?  You sleep more in the last two weeks than I have ever seen you sleep in my entire lifetime!"   To say my kids freak out when I'm not on my game is an understatement.

I'm not exactly sure what happened or is happening but I am exhausted beyond belief.  I did end up having a heart felt visit with my doctor and he said in no uncertain terms that if I don't change my life and my level of stress, I won't be around in 3-5 years.  He's seen it before in military servicemen and paramedics.  Being exposed to high levels of stress, traumatic experiences and always being on high alert, literally wears out the body and it's happening to me. My labs are screwed up, my kidneys are not improving and I have never felt so tired.

We've had a few really good weeks, I mean, as good as it gets for us.  The kids have all been holding steady, no one has really been too sick.  I had my surgery and was forced to slow down and I think that was enough of a cue for my body to completely fall apart.  So, it's been a rough few days as I have tried to reassess a lot of things in my life and how I handle them.  I have to report back to my doctor next week on what I'm doing to change things.

I've been looking at new employment options for one thing.

I've stepped away from social media.  I never post much anyways but I stopped involving myself, mostly in the support groups I'm in for the kids' diseases.  They are stressful places to be right now.  It's not helpful hearing about all the kids dying, struggling, and requests for fundraising.  It's been hard because most of my friends are in those groups so I feel like I'm turning my back on them but I just can't go there right now.

People are also very stressful to me lately, especially the ones in my life who don't have good intentions and are basically, mean, controlling, entitled people...ya, those people, I'm avoiding.

Shelbie had her big PET scans on Monday and I didn't go!  That was a BIG deal for me.  The kids had been invited to spend a couple of days with their dad in Utah and he was in town, so they rode back with him on Saturday night.  Shelbie's scan was Monday morning and I had intended to drive down to meet them at the hospital but, I didn't.  I let her dad take her since he was coming back to town anyways on Monday for other reasons.  I think this has been the first test I have missed for Shelbie. It felt lousy to let her down but she did great.  No results yet though.

My wrist was feeling a little better but I can officially say that as of last night, it's worse than it's ever been.  I have a golf ball size lump on my wrist and the swelling is now extending to my fingers and elbow and the pain is impressive.  I'm having spasms, a tremor, no grip strength blah, blah, blah.  I refuse to take pain meds and too much over the counter stuff is not helping my kidneys so I'm trying to tough it out.  I will see the surgeon next week and see what's going on.

So, basically, we are in a recession over here.  That time when everything has seemingly fallen apart, giving us a chance to rebuild.  The trick is...how will we put it all back together?

Okay, but...I did make a cake this week which was some great feat in and of itself considering I had one good hand.  I have been planning this cake for so long, for my dear friend's birthday.  I've been so checked out, I actually missed her birthday but I made it anyways...a week late!  Ugh...

                                  

Thursday, July 12, 2018

It's not what I expected

I figured out today,  that this is what I want on my headstone when I'm dead...

Life...It's not what I expected.

So, I think I'm set.  Chocolate Chip cookies for the luncheon meal- just cookies, and that on my headstone.  They can't be crummy, hard, crunchy cookies but thick, chewy, chocolately cookies. 

Okay...

I don't know why I think about these things but I do.  Anyways...

Two weeks ago, I was asked to write a brief description of my life, the history of our little family.  It was read to an LDS Youth Group in Utah, at a Pioneer Trek.  I am going to repost what I wrote, since typing is still really hard and time consuming.  It's kind of long-ish.  It was read at the top of the Women's Pull.  The women's pull is when all the young women have to push their handcarts up a steep hill, alone, while the young men stand at the rocky top and watch quietly without any kind of encouragement or help.  It helps teach the youth about faith, patience, trust, but it is also reminiscent of life.  Sometimes, we have to muddle through alone, our own Gethsemane where we come to know our Savior and Father in Heaven. 

"Expectation is a word itself that holds so much promise, hope, depth and breadth. It covers a lot of ground. It's a word that can fill the universe or just a small, insignificant moment in your little day.   A lot can happen with an expectation. 

It can mean something as simple as expecting dinner to be served at generally the same time every day, snow in the month of January, bed at 11 and awake with the rising sun. You come to expect that each day will most likely resemble the day before, and next week won't deviate much from the previous week or the week before that, or even the week you had last month. 

Most expectations steady us, keep the keel of life even; life is mostly predictable.

We invest a lot of ourselves into expectations, whether it be the unspoken; yet understood, or the ones more boldly accepted on the play grounds of youth.  We are a culture raised on fairy tales and fables.   From our earliest beginnings we are taught the happily ever after story.   We come to expect that life is fair in the end, the underdog wins, good prevails, and prince charming is just a kiss away.

I expected all this and more.  I expected to breeze through adolescents; making my parents proud.  I expected to graduate university with highest honors and set out on a career path of staggering success, marry a hardworking, young man who adored me more each passing day.  My little girls would dance their way into the hearts of everyone, pink ribbons and pig tails trailing behind.  My boys would become boy scouts, play sports, and deliver an unforgettable valedictorian message.  I expected I would do it all, experience it all…be it all. 

Well, I’m not young and na├»ve today.  Life has happened…is happening and it’s not exactly what I had come to expect and none of my experiences were first laid out in the pages of bedtime stories.

I didn’t exactly breeze through adolescents.  I got to experience the fine art of being bullied and shamed by mighty girls who had less self-esteem than me.  I got to know what it feels like to be used and used up.  I realized that it’s each man or young woman, for herself.  At the ripe old age of 17, I was halted by grief at the passing of my one and only friend, to the horrifying disease of Cystic Fibrosis.

Young Adult life brought only a meager degree, passing grades in a profession with less than impressive success yet fed my creative mind.  I married a young man; I doted on him, and cared for him and we were blessed with three children, a girl and two boys.

My daughter hated pink and pig tails not to mention she would rather wear blue jeans than tutus.  She loved science and T-ball but not enough to do either for very long.  My sons fidgeted in right field, sat down and day dreamed as short stop.  “If you can’t get an ‘A’ a ‘C’ will work too.” Became our daily mantra.  From there it was nothing more than “Just show up.”

There was a moment of monumental realization as I rode in the back of a Life Flight jet to a distant Children’s Hospital when I realized…This is not at all what I had expected life would be.  In that moment of disproportionate feelings, you are big and awkward, stark and naked in the middle of your life, embarrassed that you somehow missed the mark of what was expected of you.  What you expected of yourself; of life.

My three children haven’t had the same opportunities that come to most children.  They were born with a rare, terminal genetic disease that is aging their body at an alarming rate.  Their hearts have begun to fail, the marrow doesn’t produce enough blood cells and every week, someone is getting a test, a treatment, another hopeful lease on life.   They look normal, beautiful, handsome and all that stuff, but inside, they are dying.  We later came to learn that the odds of being born with this disease is 1 in one million.  Having a chronic, debilitating disease is hard and affects every area of life.  School was interrupted with months of chemotherapy.  Jobs were lost while hearts were being repaired.  Hospital stays commandeered the holidays; Thanksgiving, Halloween, Easter, Birthdays, even Christmas took a hit.  All the expected milestones of life were missed by a mark.  Nothing can be called normal and we spend each day, adjusting our sails and readjusting, in hopes of suffering these trials well; being wholly joyous. 

There is a moment when you stop and stare into your life and realize that it was never meant to happen in a hospital room or doctor’s office 5 out of 7 days in a week or unfold in a condo as a single mom for the past decade or so.   My dreams didn’t consist of holding their hands and whispering “I love you” as they were wheeled away, down the sterile corridor for the 20th bone marrow biopsy.  I didn’t think I would be cobbling together a living on odd jobs and a prayer.  I never planned to hold on to my children for dear life; to suck out as much living and loving as I could from every possible, exhausted moment.

I remembered some time ago, sitting in a hospital room, with my son who had been life flighted the night before, a night when I thought I had reached the end of what I could possibly handle.  I heard a talk from Sister Sheri Dew.  She spoke of the faithful men and women who stood at the end of Parley Street in the City of Joseph, one morning as they prepared to evacuate the city.  The wagons and handcarts were poised in a sturdy line with faith, hope, and courage in tow.  Sister Dew asked herself, as she stood one day at the end of Parley Street, if she would have been like those faithful saints.  Would she have been able to load her wagon and “Follow their Faith into the Wilderness.”  Could she be the woman God needed her to be?

On that very lonely night, after reading her talk, I stood at the end of my own Parley Street and asked myself those very same questions…Will I be a faithful daughter of God and load this wagon?  Will I be the woman God wants me to be…needs me to be…thinks that I am?  Will I be a keeper of the faith for my children as we navigate this chronic world of illness together?

These are the very moments that have become my greatest expectations in life.  I expect that life is hard but life is holy.  I expect that life will be perfectly imperfect.  I expect that the greatest lessons can only be learned in the most harrowing of struggles.  God is preparing us for great, eternal things.  I expect that I will be heartbroken but those pieces will hold more love than I could ever imagine.  I expect that I will feel burdened and broken and grief will pass through me and I through it, but the light will come and set a joy upon me that can never be measured with the yardstick of the world.  Every day, I feel the weight of my world and every day, I witness miracles, a simple sacredness that can be found in no other place, but suffering. 

We push, and we pull our handcart of trials and there are prayers on one side and Heaven on the other and somehow, as we wrestle along, we stumble upon joy.  Wholly, joyous moments that come along so completely unexpectedly and I feel overwhelming peace and love for the trials that God has entrusted to me…to us.  I know without doubt that this Gospel is truth.  I know that God is in the very smallest details of our life and that Christ is not far off, watching and waiting and swooping in with the most beautiful balm of healing and help when we can go no farther. 

I know that where ever I am in the struggles of life, it is where I am expected to be by a loving God who trusts me to learn these great lessons and in the quiet night, I can hear Heaven whisper- All is Well.  And it is… "

Wednesday, July 11, 2018

Post Surgery

Got a hand it to the surgeon...see what I did there.

I got the stitches removed today except after the nurse took them out, the PA came in bewildered why they were taken out.  He wanted them left another week.  Oh well, I wasn't about to have them put back in, so I am just being super careful not to split it open.  Of course there are stitches inside so it will be fine. 


I didn't get to see the surgeon on this visit which bugged me because I really wanted to know what happened and why it is so much harder than I thought it would be.  The PA didn't really know since he wasn't there so I got the surgical notes.  He did have to take the mass off of two ligaments and ended up taking out a nerve that was damaged.  He also had to do some cleaning up of the joint itself and it was much deeper than he thought.  So, I guess that explains it.  

It's extremely swollen and sore.  I've developed a sudden case of Tourrette's because if I move it or bend it too far, the pain sends me through the roof.  So, I just wander around the house saying, "GAH" or "GEEZZZZ".  It's all fun and games.  

This week has been a pretty hard week, not gonna lie.     

Sunday, July 8, 2018

The driving force

Not to beat a dead horse but this week was long and rather hard for me.

It takes me a minute or two to wrap my head around things.  I'm a big fan of letting things percolate before I really grasp an understanding of the experience- whatever it may be, good or bad. 

Hand surgery clearly isn't a harrowing experience in and of itself.  It's rather lame actually and unless you lose all function of your hand, it's merely an inconvenience.  I live my life from one inconvenience to the next, everyday, so I've really been caught off guard with how hard it's been.  Not only that, I feel like I need to diminish my story because its nothing compared to just about anyone else, but especially my kids.

It all boils down to the expectation gap.  I expected it to be something different.  I thought it would merely be a hiccup over the course of one day.  I planned to sleep it off Monday and be back to normal Tuesday.  Instead, I have been completely exhausted and have had to slow way down.

There's a reason I am never sitting down- I hate thinking.  I hate feeling.  I especially hate being forced to consider my somewhat exhausting and often hopeless situation.  In these moments when I am not able to do what I normally do, I think too much.  In all that thinking, I have realized that I am so worn out and I'm afraid I've lost the driving force that kept me going and I'm not quite sure how to get it back.

I follow a couple of fitness trainers on Instagram.  One guy, just completed a major fitness competition where in he dropped his body fat to unreal percentages and built out his muscles in staggering and impressive ways.  He did a couple of a figure competitions and won!

Now that he has accomplished what he set out to do, he feels lost since crossing the 'finish line'.  The challenge he faces now, is keeping his mind in the game instead of going to the "now what" place.

I guess that is a little how I feel these days.  We've been pushed hard the past few months.  Our schedule has been insane with weekly trips to Salt Lake, so many disappointments and scares. I been wrestling with the trials, trying so hard to be a gracious host, doing hard things, learning harder things.  Life has quieted down a little as far as the kids are concerned which gave me space to do this.  Sam got through his first infusion.  Shelbie's second set of scans is a week out and Spencer is making a movie.  It could be worse but its not.

I am sitting here with that 'Now What' kind of funk and feeling.  It's sort of a weird, overwhelming place to be.  I'm trying to understand what I need to learn from this.  I go through hard things with my kids everyday.  I go through hard things in many ways but I've always felt able to handle it. This hand surgery has been my Kryptonite- that moment when I realize I can't do it all and I can't even do what I've always done...At All!! It kind of freaks me out and right now, this low energy is my driving force.  Somehow, I've got to turn things around.

Wednesday, I get the cast off and my stitches out and we'll see what I'm left with. 


Friday, July 6, 2018

Catching Up

It's been the longest week ever!!  I was reminded this week about what a poor patient I am.  I am a much better caregiver than being the feeble, handicapped one.  It completely wears me out emotionally but the kids have been so amazing!  They have jumped in and helped out in more ways than I imagined. 

Spencer was able to come home for the holiday which was great.  The kids connected in new ways they haven't before and it was really great to see them grow even closer. 

We went to the parade on the 4th.  The funny thing is, we hate the parade.  We all hate being in crowds, we aren't big party/social people.  I would have been happy spending the day sleeping since I have been so tired from pain.  But...I got dressed, put on a hat, since one handed hair washing is no fun!  It was alright sitting in the sun and doing nothing.  Sam had to work at the Idaho Falls parade and we were going to go to that parade to support him but I really wasn't feeling well enough for that much stress.  I was really worried about him though, he has been pretty worn down this week and has little energy so doing flips down the asphalt street for 2 miles in 90 degree heat wasn't a good scenario.  His girlfriend works with him so she was there and that made me feel a little better that she could call me if something happened.   As it turns out, he did fine. Tired though, he got home at 1:00 pm and slept the rest of the day. 


Shelbie and I at the parade

Spence and I at the parade
 Shelbie, Spence and I were suppose to have a photography contest of the parade.  They didn't enter any photos so I guess I won!




And...because we don't do crowds of people...we went to the Idaho Falls fireworks that evening!!  Ugh...All the cousins wanted to go and since we are trying to live our "Is", I went along.  Sorry, no pictures though.

Last night, Shelbie bought some fireworks and we all gathered again to let them off on the driveway.   We were a mixed crowd for sure...My Wasband's nieces and nephews, their girlfriends and boyfriends, my kids, the neighbor with her kids, my Wasband's 2nd Ex Wife and their little girl- my kids' half sister.

To many, it's weird that I love my Wasband's family as much as my own and that we are all able to come together regardless of our past history, that hasn't always been pleasant or easy.  I love that they enjoy being with me and hanging out at my house.  It's been a good thing for the kids and their half sister to continue to foster and grow a loving relationship.  She's a darling little girl and I am happy that I can be a part of her life as well.  So, this is not just a picture of a group of close friends, it's a picture of forgiveness and acceptance and expanding our love.


In the midst of the fun the kids had...Sam had his first infusion as planned.  It took nearly 4 hours and as you can see from the picture...we tried to make the best of it and keep our sense of humor.  Note: the fat, hairy, belly fanny pack Sam is wearing to hold the pump in.  He was really having a hard time with this and Spencer was just trying to cheer him up.    Shelbie was good to support him and explain how things might feel.  Spencer was a big help to get the IV tubing primed, connected and inserted in the pump. It's definitely a two handed job so his help was priceless. 


So, we are ending the week with a lot of stuff on our minds. 

This surgery has been surprisingly difficult considering how small it was.  I never really understood how much the kids rely on me- how much we rely on each other.  It has actually scared me a bit and left me struggling.  I think this morning, I finally feel like things are improving instead of getting worse like it has been all week.  All my fingers ended up turning blue and bruised and very swollen.  I stopped taking pain pills because those were making me anxious and emotional so, I've been going without any pain meds.  Seriously though, I finally feel like I"m on the mend.

This weekend I will be cramming work in.  Spencer left this morning.  He has been asked to be a second shooter on a short film being shot in Utah.  The finished project will be entered in several film festivals.  The man who asked him to be part of the crew is a very well known Director in the Western States.  This will be his first opportunity to work with this man and hopefully, he will make a good impression and get some paid jobs with him.  For now, it's an internship so no pay. 

In our effort to let things unfold for us without judgement, it will be interesting to see where this leads Spencer. 

Monday, July 2, 2018

Surgery Day

What can you do with one hand?

Basically nothing...Just kidding. 

I was seriously unprepared mentally for this surgery.  I've had a fair share of major surgical procedures but this one caught me off guard.  I went into this thinking it was just a very minor thing, in fact embarrassed to even mention it.  In my mind, it was on the same level as a mole removal!!

Nope...not the same.  This is my new soft cast for two weeks.  It's not really soft though.  There's a hard plastic shell under all this cotton and wrap.  It goes from my elbow to fingers.

I was not one bit nervous about this even though the plan was to just do an arm block.  That was still what happened, sort of.

Technically, its called a Bier Block.  They force all the blood from your arm and prevent the blood from coming back with very tight tourniquets. Then, they flood the veins with Lidocaine.  It was excruciating pain and burning!! I was still so oddly calm but they gave me Versed in another IV and the next thing I know, they are asking me if I want Sam to come back.

It was only suppose to be a 20 min deal but it was just over an hour.  He removed a bony mass that had to be taken off nerves, tendons and then down into the joint of my wrist.  I cant even move my fingers without massive pain.

Anyways, so it goes.

It was very strange having the tables turned, with me being the patient and my kids looking on.  Sam drove me and hung out at the surgical center in Pocatello.  I used him as my point of contact.  As they were getting ready to take me back, they asked who I wanted making decisions for me if something happened.  I told them Sam could.

The color drained from his face!  It was hilarious.
"Like what decisions? I need to know what could happen!" He asked.
"If they have to amputate, leave me a stump."  I told him.  He lightened up a little and we carried on a little joking but I realized I left a lot for Sam to handle. 

The kids have been awesome and attentive.  We got home around noon and the house was spotless, the laundry was done, dishes done and a huge bouquet of roses sat on my nightstand.  They wouldn't let me do a thing.  Our neighbors brought dinner. Tonight, Sam drove me to work and helped me clean, then he and Shelbie went grocery shopping. 

I'm struggling with the amount of pain and feeling so sick.  It's also not easy for me to sleep and rest my arm when I have so much work to do so I can make money.  I'm sure it will take a few days before things turn around but that's fine. It could be worse. I'm going to continue my self imposed challenge to not rush the meaning of things and let God's purposes unfold in time.

Well, one finger typing is not fun...I am grateful to my sweet kids for their loving service today.  I'm so blessed...AND Spencer is coming home tonight so I'm excited to have them altogether again.

Sunday, July 1, 2018

But First

There they were, fiddling with their nets and Christ comes up to them and says, "Come follow me."

By all accounts, they did.  They dropped everything and followed Christ. I'm certain the Gospel of Mark didn't edit out the part when Simon said, "Well, my wife had a special dinner planned tonight, we are finally having lasagna, so can I meet up with you later?  After dinner maybe?"

Peter probably didn't have prior plans to attend the chariot races later that night.  I'm guessing that not one of them said, "Follow you?  When?  Now?  Where are we going? Then what?  Will we be home for dinner?"

Nope, they straightway left and followed Christ.

I have thought about that over and over this week as I've been carrying my little experimental bowl, filled with God's plan each day.  I have tried to be accepting, understanding, hopeful, grateful...all the stuff disciples are made of.  Instead, when I watched God filling my bowl with his will, it was so easy to say, "When!! That's enough!"  Or "Great, now what?"  "Is this completely necessary?"

I realized, every day, I am being asked to drop what I think is so important and follow a different plan.  The plan that God has for me.  Honestly, I want that plan but it's so easy to say..."But first...I wanted to do this..." I never quite just go without complaint.

So, always something to be working on...

On Thursday, we had one hour to spare so Shelbie suggested we attend The Hall of Breakfast.  What a fun little excursion on our quest to live the IS, instead of the usual When and Then.

The Hall Of Breakfast is in Salt Lake at the Gateway Mall.  It's by appointment only and it's a fun display of all things breakfast.  We all know how much I love food...especially breakfast!! So... Just kidding but it was really a fun little break. Obviously suited for smaller humans than us but we are young at heart.

Walking into the exhibit through a large refrigerator door. 


Toast Art

Spencer on the sunny side!
 Okay...this story is unbelievable!  We are wandering through and I'm people watching as I love to do and I see this girl in such a cute black and white dress with the cutest little boy in tow.  I even said to Shelbie, "Cute black dress!"  and we kept walking.  So, I asked this girl to take a picture with us!!

 Just kidding!!!  A few minutes later, I feel a tap on my shoulder and it's the girl in the cute dress!!  She's my niece!!  Ha ha...I was dying.  She lives in Edmonton, Alberta Canada.  She is married to my nephew and I have literally only met her twice.  Once at her wedding a few years ago, and the second time at my other Nephew's wedding.  Both times were crazy busy so I really haven't been able to spend tons of time getting to know her.   Spencer hasn't even met her since he was serving his mission when Jared and Marissa were married. 

Her parents live North of Ogden and she was visiting for her brother's wedding.  I was so over come with emotion and hugged her tight.  I've never met their little boy who is just 1 and I didn't want to be the creepy, stranger, so I didn't get close enough for a picture.   It was so incredible.  I was really trying so hard to keep from crying my eyes out.  I wasn't expecting so much emotion in being so close to family.  You don't realize what you settle on and live without until you feel what you are missing...connection to loved ones.
Spencer, Shelbie, Marissa, and Me.

I was so missing Sam...He would have loved being here but he had to work.

Me with my favorite sugary cereal mascots...oh and Ed Sheeran.



The cereal ball pit
It was a fun way to spend an hour.  They also had plenty of breakfast food samples and a contest between pancakes and waffles. 

Who knows what this week has in store.  Well, surgery for me tomorrow and I have no idea what to expect before, during or after.  I'm kind of winging it this week.  I can tell you this much though...since my little experiment of my sacred bowl started last week, it's been nothing but unexpected trouble!!  Testing, trials and ridiculous problems that have made my life completely chaotic but we are hanging in there, trying to live it as it comes and withhold judgement until God has a chance to put his meaning on it himself.

Snippets

Life's been cruising along... Shelbie is doing so much better as we wrap up the week.  Last weekend, I attended a Neuro-Immunology con...