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Showing posts from January, 2016

Super Human

Well, another weekend has come and gone.  I'm not exactly sure what to write tonight.  I have thought long and hard about this blog.  Sometimes, I think it is all just too much.  It's too much to write, it's too much to read.  I keep thinking I just need to make up something good and funny.

But...this is the real deal.  This blog is about what it feels like to live with this disease.  I think it may come as surprise to many that I am not perfect.  Surprise!  I'm not.  I'm not perfect and I'm not super human.  I don't have any special skill set you don't.  I haven't been given a leg up on faith or hope that makes me anymore equipped to deal with this than you or anyone else would have.

At times, I think I could win the gold for an Olympic event for the highest and farthest jump to conclusions.  In the next minute, I'm a Queen for the day...the Queen of Denial.  And then, in another quick blink of the eye, I'm exhausted beyond any description…

Patience and Prayer

This week!  I tell you...the energy it takes to be patient and pray is astounding.

Patience and prayer in some ways, goes against my grain.  I'm a mover and a shaker.  I make things happen.  I don't sit around, ever.  I have been trying the past few years to really focus on the will of God, especially when it comes to things I can not change or can not control.  It is a trial in itself.

Honestly, yesterday was a shambles.  Just a downright messy mess of a mess.  The day was being fueled by frustration, fatigue and anger, not faith.  Nothing close to faith.

This morning, I said my prayers.  Do you ever feel like prayer is just an exercise in passive laziness? (Yes, I meant to be redundant) What I really want to be doing is knocking heads together, making mean and angry phone calls, getting appointments set up, screwing the insurance protocols...This isn't just anyone we are talking about here, we are talking about my daughter.  My little girl.  My flesh and blood.  An ama…

Amazed by Grace

I am amazed by so many things these days.  Mostly, I am amazed at Shelbie.

I am amazed at how she is handling this trial.  I am amazed at her strength, her courage, her ability to keep on going in face of ever increasing odds of this not ending well.

I am amazed that I am having a harder time than she seems to be.

I am amazed that once again, we are the ones having to wait this out for what really feels like unreal, unfair, unprecedented amount of time.

I am amazed at just how much the human spirit can handle.  I'm amazed at how much we can handle. I feel like I barely survived the life threatening infection of Spencer and Shelbie's stroke.  It seems entirely unbelievable that this is really happening.

I feel like I should be trying to capture some of our moments on video because they are so amazing; staggering to me.  I am finding it extremely hard to stay present.  Most of the time, I feel like I am viewing life from the corner of the room and just watching things unfold. …

Hide Your Crazy

On our way to some appointments in the city this morning, a song by Miranda Lambert came on the radio called 'Mama's Broken Heart'.  Here is a part of the lyrics...

Go and fix your make up, girl, it’s just a break up
Run and hide your crazy and start actin’ like a lady
'Cause I raised you better, gotta keep it together
Even when you fall apart
But this ain’t my mama’s broken heart

Powder your nose, paint your toes
Line your lips and keep 'em closed
Cross your legs, dot your eyes
And never let 'em see you cry

Go and fix your make up, well it’s just a break up
Run and hide your crazy and start actin’ like a lady
'Cause I raised you better, gotta keep it together
Even when you fall apart
But this ain’t my mama’s broken heart
I've decided this is our theme song for today.

Hide'n the crazy is what it's all about.

Today's been a freaky hard day for me on the inside, Shelbie is meh...and Little Bear is hanging by a thread and getting sick but won't let me ta…

The Physician

Tuesday.  6 days since our world turned upside down.  6 days and we have heard nothing from our oncologist.  Nothing.  6 days of trying to be brave.  6 days of trying to convince my little family that everything is going to be okay.

Last night, I didn't get to bed until almost 2am.  Trying so hard, with little success to work and even get caught up on work but that didn't exactly happen. When I decided to abandon the notion of being creative or productive, I laid in bed with my head in chaos over what to do with Shelbie and how to help Little Bear.

I have seriously never felt so committed to anyone in my life as I have been to Little Bear.  We completely transformed Spencer's bedroom to a teenage girl's room.  I have done everything I knew how to do to make her feel welcome and loved, knowing full well, that this must be the hardest thing in the world for her too. Sam and Shelbie have included her in every one of their activities and never noticed the little things s…

Happy Moments Roll

Today has been a day of creation.  I have realized that we can't just assume the happy moments are going to happen on their own.  Not when we are waiting for life changing news.  We can sit around and get discouraged with the fact that we are worried and tired and losing our ever loving minds, or we can create our own happy moments.

So...that is what we have attempted to do.  It's not to say some angst and nail biting moments of spine tingling grief didn't have its place as well.  I had plenty of work to do and a big presentation so while I worked my fingers to the bone, the kids went into town to try out the Popeye's chicken and show Little Bear Hobby Lobby.  Spencer kept me updated with his hilarious commentary of the day on Snapchat.   He's a good sport to accompany three girls to a craft store! (Shelbie took her friend).  Poor Sam missed out on all the fun since he was in school.

This evening, we said goodbye to Spencer, had a good cry in my favorite crying spo…

Added Upon

I can't remember when I had a day as hard as today.   I also can't remember a day as clear as today; a day when I could again see the workings of Heaven come full circle.

It seems like the Adversary really takes advantage of our extremities.  He can't just leave well enough alone and Sunday seems to be the day he just loves wrecking for me.

Spencer is sick, Shelbie was in pain and I just plain forgot to wake up Sam for church so Little Bear and I went on our own. I held it together fairly well through sacrament meeting but Relief Society, not so much.  I could feel my nerves just unraveling.  I ended up having to leave and go sit in the car to pull myself together.  I called my mom and she listened to me sob for 10 minutes.  She had to go to church so I sat there for the remaining hour reading conference talks and crying with my head on the steering wheel.  Just before the meetings ended, I put my make up back on and went back inside to wait for Little Bear.

She seemed to …

A Mell of a Hess

Each morning when I went to check on my dear, sweet neighbor Carma, she would say, "Well, good morning!  I'm in a mell of a hess."  This was her answer in response to my question of how her night went.

This is pretty much the best way to describe the past 48 hours.  Actually, it's as if I can actually hear Carma saying that to me.

Here we are again in this very uncomfortable position of waiting and wondering.  I'm about ready to boycott the phrase, live in the moment, or, just take it one day at a time. Even I've tried to sell myself on this idea and it's stupid.  At least for now, I've decided it is stupid.  If I was some monk atop the  Himalayan mountains with nothing but a robe, some water crackers and all the time in the world to dedicate to prayer, scripture study and rest when needed, living in the moment would be no big deal.

I'm not a monk.  I am a mom who has a lot of people to care for and many responsibilities to put food on the table…

I know God loves his children...

I think it was Nephi, in the Book of Mormon who said, "I know that he loveth his children, nevertheless, I do not know the meaning of all things."

I don't understand what is happening to us but I know that Heavenly Father loves us.  That's about all I know.  I know that he loves us enough to trust us with some big things.  I know that he loves me to send me three spirits who would fill my life with joy and love and meaning.  I know that he is continually orchestrating impossible things for my peace and happiness.

Yet, I don't know why he chose me to take care of these three beautiful spirits.  I don't know how we will do the things we have been called upon to do.  I don't know if I really can live by faith alone.  I don't know if I can watch one more day of suffering and sorrow in this world or in my children.  I don't know how we are going to make it.

We spent the morning at the hospital for Shelbie's CT Scan with contrast.  She was in good …

That moment

We have a lot of moments in this little family of ours.   Moments of joy.  Moments of peace.  Moments of pain.  Moments of sorrow and sadness.

Today, we had a moment. It was a moment we haven't had in a long time. A long time being maybe a few months.

We headed up to the hospital this morning for Shelbie's MRI.  On our way out, she kept 'joking' around saying she probably had cancer and wouldn't it be weird if it wasn't her back at all that was causing the pain...

Just an hour ago, our doctor called back and said that she needs to have further testing since they found an abnormal number of very large lymph nodes.  He was more worried about that than what is happening to her disks in her back.

I don't like that feeling of having the blood drain from your face and puddle at your feet.  I don't like that lighter than air feeling like you might tip over with the next shift in the air as someone walks past.  I don't like that feeling of trying to put o…

Stupid is...and other things.

One would think that by the time you grow up, whenever that is, you have mastered the art of making good decisions.  I like to think I make good choices but apparently not.

Two days before Christmas, I broke a tooth.  It didn't hurt much and with the holidays, and my extreme aversion to dentists and spending thousands of dollars with basically nothing to show for it, because, let's face it, no one is looking closely at my molars, I ignored it.

When I felt a shadow of pain, I took some Advil and ignored it.

When the pain started waking me up at 3:45, I took some Advil and ignored it.

Now, that I can no longer eat solid food and the throbbing pain is creating a stroboscopic rhythm in my head, I really wish it was Friday and I could call a dentist to put me out of my misery.

But...it's Saturday!  I'm simmering in my own anger that I waited.  I'm pretty sure that a month ago, it might have been a simple procedure, now, it's going to require a few hours of drilling,…

The Week in Review

Well, we've had a week with our new family arrangement.  It is much harder than I thought it would be.  I know it is probably the hardest for her.

We are working through the hard things, trying to communicate.  At first, I tried to give her a lot of leeway with things but then realized that it wasn't enough structure so we spent the morning trying to get things on track.  It went well.  I still believe that a little love and understanding goes a long way.

I would not be able to do what she has done.  There is no way I could move in with total strangers and express the things I needed.  She is doing so well in that regard.  She seems to like my kids and my kids like her. I know that as each day passes, we will find our groove.

For now, I realize that the medical stuff is going to be tricky to maneuver.  Yesterday we were stuck at the hospital for over 12 hours and that is rough on us, let alone someone who isn't accustomed to watching someone else suffer.  I have also foun…

29 Gifts Continues

Life is busy, but in a good way!  My 29 gifts project is underway and I'm so happy that there have been some people who have followed me on Instagram and are joining in with their own challenge!  It truly changes things.  Here is the latest and greatest in my journey...


Day 6 was probably my favorite gift so far.  It was one that just happened, not something I had planned.  I was checking out at Walmart with a bunch of random stuff and the cashier was this older lady, very sweet.  She commented on just about every item I bought and made every effort possible to be engaging and endearing.  There were 8 people behind me but she didn't seem rushed or harried. You would have thought we were best friends.

As she tore the receipt from the machine, she carefully wrote her name across the top and said, "Ma'am, if you fill out this survey and mention my name, then I get a treat!"
"Really?  You get a treat!"
"Yes!  I love treats!!  Just fill it out if you t…

The Price We Pay

Everything in life comes at a cost.  We aren't always prepared to pay the price of something we want.  We stretch our budgets or better yet, buy it on credit and worry about how to make up the cost at some later date.  Nowadays, it's far easier to just buy now and pay later, rather than make the sacrifices needed to save for a season and buy it when we have the funds.

The price we pay to come to know our God and Savior is very much the same.  We can either go without that relationship and experience or we can pay the price and that is going to mean sacrifice. There is no credit system in the process of knowing God.  If you want it, you will sacrifice for it.  If you don't, you won't.  In a lot of ways, you pay now and receive the blessings later.  I guess it's more like an investment rather than an impulse purchase.

I am finding that this year is much different than years past.  The mood at home is different. Experiences have come, challenges are arising that are …

But...you said!

This might be the hardest post I've written in a long time.  I have waffled about including this part of my life on the blog and decided that I would.  But, it's scary.  It hasn't been an easy week.  As news of our changes has been making it's way around the rumor mill, I have been offered a never ending commentary of thoughts, the majority not very kind or loving, let alone supportive.   I guess I know where I really stand with some people.

Our life is changing.  Our family is changing and we are embarking on a whole new chapter of life.  This is one of those life changing moments when nothing will ever be the same after tomorrow.

If you've been following our family, this blog, you will be somewhat familiar with my project, 29 gifts.  Last year, for a total stranger, I gave a small gift.  Nothing really.  It was given from my heart to a young woman who I had only briefly heard about a millisecond of her life.  This past Christmas, again, I gave a small gift to th…

Laboratory for the living

This has been a whirlwind of a week, I mean, a little more whirlish than normal.

First, I wanted to provide an update on the kids.  Especially a Salmonella update.

Spencer seems to have cleared all bacteria that plagued him for weeks. Not a day goes by that I don't feel gratitude that he survived that ordeal.  I know to some, that seems odd to say but for someone without a working immune system to get such a toxic bacteria, his recovery is nothing short of a miracle.  Now, he is facing the fallout and working on healing and gaining weight.   The Salmonella bacteria destroys the part of the gut that processes carbohydrates.  He was already having issues with proteins and was on a water soluble diet due to the progression of his disease, so now, we are in a bind.  Of course, he is back in Utah, working and so I can only trust that is managing to find something that settles in his stomach.  From my last report, he has gained 1 pound!  I'm not sure that is real weight, maybe a wa…

Map making

Some time ago, I was reading an article about the map makers of days gone by.  Specifically, a map that was printed on the skin of a calf back in the 13th Century. It charts the Mediterranean with such accuracy that it can be used by ships today to navigate the waters with nearly exact precision.  This early map has become one of the greatest mysteries as well.  The map maker responsible for this, left very few clues as to how he could draw something with such accuracy.

The curator for the Library of Congress, John Hessler said this of the map. “Even with all the information he had — every sailor’s notebook, every description in every journal — I wouldn’t know how to make the map he made,”

As it turns out... after many years of research and study,a theory developed.  The century old map maker used Butterflies. An unlikely tool, yet the secret in his precision and skill.  In a process called morphometrics, they discovered a precise relationship between the spots on Butterfly wings and…

The want of many

Well, it is that time of year again.  My third annual 29 gifts project has begun.  Every year, I think I'm too busy to do it again, yet there is no question that it is something I need. It changes my life.  It sets the new year on a course of gratitude.

I'm already on day 4 of the gifts project.  I've been posting my efforts on Instagram.  I want to make something clear...I do not do this experiment in giving, to draw attention to myself.  I don't post my experiences and gifts because I think I'm all that or something amazing.  I do it, because I have a deep passion about where we are going in life.  Where we are all going in life.

We spend so much time anymore, to ourselves.  We take a few minutes, more than we should, liking a Facebook post, as if a 'thumbs' up is going to change things for good or for bad.  We plead on our social pages for prayers, we air our troubles and we dutifully comment to others that a prayer will be said, a thought will be given…

We're off to a good start...

Not really.  2016 is off to a crazy start.

Sam has been having GI trouble since Friday.  I'm not sure if his ulcerative colitis is acting up again or what but he has been pretty uncomfortable with some very odd symptoms, including a GI bleed.  He hasn't been bad enough to take to the ER and since it has been a holiday weekend, we have just been keeping an eye on it.  Things aren't worse, but they aren't better either.

It isn't the first time this sort of thing has happened.   Although, one time, he had similar symptoms and for three months, they couldn't determine what was happening so they finally did an MRI.  It showed his small intestine being turned back inside itself.  He had emergency surgery and when they opened him up, they found that his GI tract was full of enlarged lymph nodes.  They assumed that the wall of the intestine got caught up on a lymph node and as the intestine contracts to move waste through, it just kept pulling itself inside out.  They…