Sunday, July 30, 2017

An Essay on Empathy


 Quite possibly the hardest, biggest, most convoluted word in the English language. It's a concept I became painfully aware of in 1999, when I realized, my world was not going to resemble the world I had conjured up in my teenage, dreamy, mind of happily ever after.

It was a time when I was facing the diagnosis of the kids, at least what was the official beginning.     It's a word that has provided me with hours of sorrow, frustration, anger, regret, confusion and even
resentment. At the same time, I found respite and care in the word.

So, for 18 years, I have studied and pondered to extreme lengths about Empathy and still today, it can be elusive.  Still today, it isn't second nature for most people, me included. For instance, when someone sneezes, people instinctively say, "Bless you!"  Except...last week, I was at the grocery store in line, and the guy behind me sneezed.  He blessed himself!  I actually felt shame and guilt for not stepping up to bless him myself...except I never do that!


Here's what I have learned about Empathy.  I guess I thought it was finally time to put my thoughts on paper.  For the past month, I have witnessed some tragic and hard things and it's difficult to know what to say, what to do, how to act...And when our lives nudge the life of someone who is experiencing overwhelming trials, excruciating sorrow in unreal circumstances, heartache, grief, depression, it's hard to know how to navigate that with them.  Sometimes, it's just easier to turn around, cross the street and find a different sidewalk to journey down.

Sometimes, all we can think to do is make food.  I live in a culture where food seems to be the hallmark symbol of empathy, and sometimes, that is the best answer.  Sometimes, that is the precursor we offer when we really do want to be connected but aren't quite sure how to do that.

I will never forget an experience I had when Shelbie stopped breathing when she was two weeks old.  After the dust settled, a girl from my ward showed up on my apartment steps.  She was the most timid, shy person you could imagine.  She was plain and almost invisible. I hardly knew her, had rarely spoken to her. She handed me a quart of chocolate milk but it was expensive chocolate milk.  It is made locally and tastes like a chocolate milkshake and is nearly as thick.  In her quiet little voice, she said, "I don't know what to say to you and I guess I just wanted to say that much.  I'm just so sorry that your heart is breaking."  She handed me the milk and that was it.

Those words were powerful and helped me more than any other means of help I got during that time.  She was honest and showed up.  She saw me and she let me be seen.  Sometimes, all you need is to be seen.  All you really need is to have your struggle, whatever that is, witnessed.

No one teaches about Empathy better than Brene Brown...I love this short video she offers on the subject.  Let's just start here.


Here is my list of inspiring thoughts on empathy and how to help in times of need that is different than casseroles.

  •  Early on in my journey, I read a book called From the Heart- On being the mother of a child with special needs.  It is chapters and chapters of moms writing about all subjects regarding the care of a chronically ill child.  One mother wrote this...incidentally, her name is Kathy.             "It's an accumulation of well-meant but inappropriate comments about our kids, comments that invalidate the pain and frustration of these more than challenging children."     It's okay to not know what to say.  It's okay to admit that.  Just show up.  Nothing you say is going to change the situation or circumstances.  No amount of silver lining will make it better.  Saying..."They are in a better place.", "At least they aren't suffering anymore.", "They were needed in Heaven."   That does nothing but make you feel better, not the person who is facing depths of loss that you will never understand.  So, say nothing but show up and share their sorrow. 
  • Never arrive on the scene of suffering with a plan.  Never initiate a course of action.  Show up with the intention to sit with them...even in silence if that is what the moment requires.  Maybe show up with Kleenex...the good, soft kind.  That can be helpful too. 
  • Respect their privacy.  Respect the times when they need to pull away and retreat into themselves.  There is healing in these moments too. 
  • Ernesto Sirelli- a Philanthropist says, "Small is beautiful."  Sometimes, the smallest act of courageous empathy is the most important, the most needed, the most beautiful. 
  • Grief is suppose to be sad and hard and full of unpleasant emotions that can take us on detours we never expected to take with our feelings.  Don't be afraid of those dark places.  It's down in the valley, where the streams meet and feed the mountain flowers, and the banks of the rivers are green and teaming with life.  Down in the valley can be a rich place to stop and rest. It can be a holy and hallowed place.
  • Do not judge or criticize how a person is managing their difficulties and stresses.  You haven't been where they have been.  Your perspective, is not their's. Don't make their suffering about you.  Even if your best effort goes unnoticed or even unappreciated, let's give everyone the benefit of the doubt.  None of us are very graceful, even on a good day and when bad days come, we can all be a little clumsy.  Be kind.  Be gentle.  Be understanding.  If you can't be those things, quietly step aside.  Maybe the person is more than you can emotionally take on and that is okay too.  
  • No matter how detached or prickly a person may seem, we all want to feel connected.  We are all even desperate for connection but for whatever reason, pulling away is less scary than being vulnerable to let others see the pain we guard so carefully.  It's easy to be offended and pass judgment and wring your hands and say, "Well, I tried.  It serves her right if she doesn't want help."  I'm guessing, she desperately wants help but doesn't know how to be okay with help.  Meet them where they are.  
  • Don't make the person who is suffering tell you how they need to be helped.  They are probably barely keeping their head above the surface of the raging waters that threaten to drag them under.  When you put that kind of pressure on someone, they will just feel like you are one more person to take care of instead of being cared for at a hard time.  It's a natural thing to ask and sometimes it is appropriate to say that but tread carefully and thoughtfully.  Again, maybe it's better to just say, "I'm not sure what I could offer at this time to change things."  It's the connection and showing up emotionally that  matters most...the physical acts of service and love will be made known as you go through the trial with them. 
  • Times of suffering probably aren't the right time to share your multi level business venture with them.  Gogi juice, magnet beds, foot zoning probably isn't going to heal a dying child. (that might sound harsh...but it's true!)
  • When someone allows you into their world of sorrows and grief, consider yourself blessed.  You are standing on holy ground when you share a moment of pure love and empathy in the way God intended.  You are an Angel on the most Holy of errands.  Remove the shoes from thy feet; as God said to Moses. Be reverent.  Be respectful.  Be still and God will show you how to bless them.  It is a privilege to shoulder the burden of someone.  I can't speak enough to this point.  In fact, I feel this so deeply, I can hardly find the right words. 
I love this quote by Michael Schreiner-"When the storm is raging, sometimes just having someone in the boat with us is all we need to persevere.  They don't need to change the storm, they can't change the storm.  But, they can offer solidarity and hope, they can act as a powerful bulwark until the storm eventually subsides."

Taking a journey with Empathy takes a great deal of courage.  Often, it requires us to completely change our viewpoint of suffering and sorrow.  It's a process.  It can be hard and painful and requires hours of practice.  I still find myself in situations when I don't know what to do or what to say for someone in suffering.  

I appreciate the efforts people have made in my life to show up.  I know we have an overwhelming situation.  I know I am not an easy person to reach emotionally.  I have years and years of wall building behind me.  When people ask me what they can do to help, I'm at a loss too.  

Life is hard and getting harder for everyone!!  God is trying his people at alarming rates in magnificent ways and without apology, God sends his children in the fire of refinement.   You don't have to look very far to find someone in a worse situation than you.  

I'm not writing this because I think I have all the answers.   I'm writing this because in a world of brief connections and social media smoke and mirrors that make us believe we have all sorts of friends- we need to be reminded that we really do need to be a friend.  A real friend.  A warm body.  A hug.  A smile in person, not a thumbs up! 

This afternoon, my friend climbed in my boat and together we bobbed over these waves of life that drown our sorrows but there she sat, like it was no big deal at all...but it was the biggest deal to me!  That's all it takes really.  It really is that simple to care for one another.  


Saturday, July 29, 2017

Doing Epilepsy in Style...and other news

Shelbie's epilepsy monitor came in the beginning of the week.  We still haven't started the medication yet...I think Sunday we will start.  I really wanted to get a few days with the monitor and see what a typical day and night is like for Shelbie with the monitor, no meds.

It looks nice enough, kind of like a smart watch and it's pretty darn smart!  I love the name of the device...Embrace.  What exactly are we embracing?  Epilepsy?  Embracing periods unconsciousness without the commitment of death?  I mean...that's something to embrace I guess.  It's important in times like these to look for the silver linings. This company is winning at silver lining things cause I feel so much better about things now that we can embrace it.

She has had two significant seizures but did not lose consciousness.  It monitors everything!!!  It monitors how much time she spends in various stages of sleep and how active her brain is.  One night, she tossed and turned 173 times!!  Good grief...that's like a cardio workout or something!  Maybe she didn't really have a seizure that night...the monitor was just shocked when her brain and body went silent.  That's just wishful thinking.  It was red flagged.

Thursday night, she was with a group of brand new friends from her ward.  They know nothing about her really, especially that she is sick.  They went out to Texas Roadhouse and she had a seizure.  Her head fell off to one side, she couldn't speak, she was 'zoned' out as it was reported to me and when she came to, she wasn't sure where she was or how she got there.  So, to say the least, Thursday night was rough.  They all came back here for a movie but we had to start her plasma so then they were freaked out even more!   Way to introduce yourself to your friends...I mean, cool that she got to experience a seizure at such a nice restaurant?  Lucky if you ask me!

Enough of Shelbie...

Spencer got home super late last night, slept a few hours and the boys left to help there dad do some things in Utah.  Poor kid had to turn right back around and drive back to Utah.  I worry about him.  He's happy though!  He got to be an assistant to the main videographer for James the Mormon... a Mormon rapper.  He has learned so much and he has been in the presence of some pretty well known cinematographers and videographers this week.  He also worked for a fencing company and made a little money and all with his heart that's giving him fits and more weight loss.  He's freaking me out!

Sam is starting to be a big problem.  I think I have mentioned his dizzy spells and neck pain.  I took him to the chiropractor to see if some ultrasound and alignment would help.  He's been three weeks and he's actually getting worse.  We had a good talk last night. He is dizzy when he lays down at night, rolls over, stands up, sits down...all the time really.  He hasn't lost his vision in a several weeks which is great!  I'm worried that his brain situation is escalating and he's getting a blockage in the flow of the cerebral spinal fluid.  I guess we will hold out until our next round of appointments next week.

Every day is an act of Faith.  Every day, I just have to be brave that whatever happens, it was meant to be.  I know that in my heart and that should eliminate all worry and fear but sadly, I'm just so mortal.  That sucks!  I could be such a great person if I wasn't so abnormal and mortal and broken.   Oh well...all I can do is make sure that every day is a day lived without regret.

In a way, it's a nice way to live.  To live like everyday might be your last means, you don't wait to tell people important things like how much you love them.  You exhaust the little moment, get the most out of life, find God in the hidden corners, accept his mercy and grace.  You decide what matters and what doesn't.  You complain less, go with the flow more.  Accept what comes.  Find a way.  Forgive quickly, ask for forgiveness even quicker.  You give people the benefit of the doubt, judge less, tolerate more.

I'm not perfect but it's a perfect set of circumstances to practice all this moment to moment living, trusting in a higher plan that is continually and purposefully unfolding.


Friday, July 28, 2017

This Happened...

It's been a pretty busy week around here but there's always time to squeeze in a little DIY project right?

My Wasband gave each of the kids a piece of furniture of their choice.  The boys choose shelving units that are really nice and Shelbie chose a sectional sofa with down's really nice.  Probably the nicest thing in my house even though it's over 20 years old.  The problem is, it's really big and my house is really small.

Shelbie has had her heart set on this for the basement.  I am letting her take over the basement so she feels a little autonomy.  It's not just about the sofa, it's about the memories that comes with the sofa.  Memories of family Karaoke nights, family movies with popcorn, bedtime stories, family home evenings, Christmas nights under the tree,  happy parents, happy family...all the stuff that children from divorce dream about from days gone by.

All the King's men and all the King's horses couldn't get that sofa down the tight spaces to the basement.

There isn't much I can control these days and that bugs me but I can work magic with a saw and some determination.

So...this happened one late night this week.

 I don't have a before picture, but there use to be a wall here with a 30" door.  Who designs a 30" door leading to a basement?  Dumb!  The sofa is 42" wide.  So, the top left picture is where the wall use to be.  Sam and I managed to get around the tight corner from the living room and wedge the one part of the sectional into the stairs, that is shown in the top right picture.

We had to take the railing off.  I had one hold on to the sofa...It's heavy and I'm still not certain how Sam ended up underneath it, knocked on his back but it might have something to do with me but I won't can't say for sure.  He's fine! My walls, on the other hand, are not fine!

Oh all this, we found has always been here!  I should spend more time in the basement.

Anyways...I had to take the stairs apart before we finally succeeded in getting this sectional in place.
 It looks so nice and fills up the entire room!  It's wall to wall sofa and so comfy now and it almost looks finished...if you don't look around.

Tonight, I knew I needed to start repairing my I found some sheet rock left over from my forced bathroom remodel this past winter and started repairs.

This is a brand new pail of sheet rock's half full!  Worse than a bag of chips...oh well.  I just found that funny. 

More Joy!   That wall took a beating but it's all patched now and ready for paint

My sheet rock job and taping.  Tomorrow, I'll get the corner beads and finish up. 

There were holes in all these places in the wall but now it's fixed!
I love that wall gone.  It feels so open now which is weird but it does.  It was a good decision.  I know it seems extreme but my kids hardly ask for anything and expect less.  They are very careful not to put me in a position where I have to tell them 'No' to the things they want.  Even when I try to help them financially, they refuse to let me help and they work hard until they have accomplished whatever they need.  So, when I can make a difference, I will move heaven and earth and even walls to make them happy.


Wednesday, July 26, 2017


Most days lately just feel like a struggle.  I'm not winning at anything, really.  My mantra use to"be,

Efficiency with Things, Effectiveness with People

I think this is from my early 20's when I fully worshiped Steven Covey, I had all things Covey- the planner, the books; I even gave talks to students and women on being effective.  But, that was in my 20's when I had it all figured out. 

Now, I'm not in my 20's and life has happened and happened good.  

Yesterday was a disaster in terms of effectiveness.  I had doctor appointments from 7:30 am, back to back until I walked out of my last one just after 1pm and by walked out, I mean, I literally got so angry from waiting over an hour and a half, I walked out of the exam room.  

The secretary called out on my way out..."Why are you leaving?"
"Why was my appointment at 11:30 and now it's 1:00 and I still haven't been seen?  I don't have time to sit around waiting for him."  I don't usually- rarely if ever act like that but I am tired and slammed with work and sitting in pain for nearly two hours wasn't my idea of a good time.  I really needed to be seen so I was frustrated.  

I've been so scattered.  At 3:00, I got a call from a client which I missed but it was followed by a text message, "Are you coming?"  I was suppose to be in the big city for a meeting at 2:30.  It was now 3:15.  

I thought up all sorts of creative lies to use as excuses; use the 'my kids are sick' card, I didn't get any sleep last night but instead, I just said, "I'm sorry.  I screwed up.  I will leave now if your willing to wait." She was willing to wait.  I drove the 35 miles to our meeting place and did my best to pull it together.  I spent 3 hours with her and waived my fees because I was a screw up.  

When I finally got home to make dinner at 9:30 or 10:00 and spend a few minutes catching up with my kids, I was tired but the payday came a little later when we all laid on my bed and laughed so hard at I'm not sure what...but it felt good.  Shelbie has been pretty anxious all day...I'm sad I couldn't have been home to help her, and all that anxiety kind of spilled out in random ways but it was good to be connected to them.  

We were going over her new monitor and in so doing, found out she mistakenly put my number into the settings.  I wondered why I wasn't getting any alerts.  The poor person who's number she did use was probably freaking out when they got the text message from the monitoring company saying, "Shelbie has selected you to be her caregiver.  We will alert you when she needs help!"

And then at midnight, when we were winding down for the day, we did a test of the system and it sent out a text message, "Kathy!! Shelbie needs your help! Here is her location." and an attached map with the time it will take for me to reach her from where was at, on my bed.  I'm so glad we caught the error in phone numbers...some stranger would have have a lousy night!  

So, all is well that ends well.  This morning, my day started pretty early to get some things together for a presentation this morning.  Before that, I got the wild idea to load up the wall pieces I tore out and get them to the dump.  It filled the back of my car and I was wearing my little black dress!  I'm such a dork...what a sight at the transfer pulling up with a wall hanging out the back of my clown car and my little black appropriate for the activity.  

On my way home to get my things for my first appointment, I stopped in at Maverick for our morning caffeine fix.  I had two Mountain Dew energy drinks, a 44 oz of Diet Coke for Shelbie and smaller one for me.  I saw a lady who is winning at life.  A good Mormon Mom, at least that is the perception from my insecure vantage point.  She sees me with my collection of chilled, caffeinated beverages and says, "Either you're thirsty or your buying drinks for the office."

"Oh, neither.  Breakfast for the kids." ha ha ha..."I'm winning at motherhood.  Gold stars for me all around today."  and then a little awkward laughter and I tried to hold my head high as I held on to my sins and walked out of there, put the drinks in the fridge for my sleeping children and a note of sarcasm..."Enjoy Breakfast!  I'll see you sometime before midnight!"  

Meh.  Life is short.  Do what makes you happy.  We are so full of dysfunction right now, it's humorous.  At my meeting this morning, my client wanted me to design a gallery wall for her family.  I was trying to get an idea of things they like as a family...I meant to say, "Do you like monograms?"

It came out..."Do you like Mammograms?"  I about died as I stuttered to actually say the right word!! 
AND...this is the same client I stood up yesterday afternoon!!  Her husband is a doctor in town and without skipping a beat, she said in all the excitement she could muster, "We love mammograms!! My husband especially loves mammograms!" We were laughing hysterically.  She might actually be client of the year!  She has been the best sport and I am a fool.   This job is actually going to end up being a free one because of all the ways I've messed up.  Oh well...

There's your feel good post for the day!  Now, get out there and be a winner too!  The world needs more winners like me! 

I'm off to see how many people I can continue to disappoint and embarrass. 


Sunday, July 23, 2017

Sounds of Contentment

Without a doubt, the last few weeks have been a messy time for us.  Kind of out of control, sad and messy and sometimes I worry that I am not writing enough about the really good things that happen.

Every day, good things happen and I am blessed to usually see those good things and despite the drama of sad things, we laugh a lot around here.

Yesterday, I was blessed to spend just a few minutes with 'Little Miss'.  She is a half sister to my kids.  I call her Little Miss and she calls me Kat and sometimes, I think she is my best friend.  She is so smart and has the sweetest disposition.  If truth be told, she is always saying nice things about me..."Your hair looks great today Kat!" so what's not to love about having her hang around?

 Yesterday, my Wasband was helping Spencer move a desk and stuff over from Spencer's room at his dad's and she came along to help.  She really comes to spend time with the kids but since they weren't around, she got to spend a minute with me.  I love to spoil her.  I say to her, "Ask your dad if you can have some chocolate."  Of course he says "No" because dad's think it's so important to show authority but Kat?  Kat says..."Goody!  Hold out your hands!" and then I pour handfuls of M&M's til her little hands can hold no more.  Then, her dad growls at me and Little Miss and I laugh and laugh!

Sam moved home this week.  Oh how I have missed that boy!  I am a way better mom now that GIFs exist.  I pretty much communicate with Sam in GIFs.  Before GIFs I would send him sentences written just in emoticons, which he hated and that's why I did it...You know, to show him my love.

We have had to discuss curfew...He thinks he is an adult...I think he is still my little...Here is our latest string of text messages.

So, I told him curfew was 1 am.  His reply was "I know, I know." But of course, what mom is just going to leave it at that so I send him that Judge Judy GIF and actually, it's animated and she's tapping her imaginary watch. We go back and forth...It finally ended with him sending me a chicken running around 'screaming'.  We have a good time.  I especially love it when he comes in to tell me he is home.  Lately, I've been laying there awake at 2 am...because he's always late (he always lets me know he will be I guess that's good.) He doesn't know I am awake because it's pitch dark so I wait for him to poke me and then I say some unsuspecting thing and he always ends up mad but a happy mad.  He's a good kid.  I'm glad everyone is home.

Yesterday, I felt pretty tired and lousy but I got a huge task accomplished...Organized the medications.  I have been dreading all these new meds the kids have to start and I need to be organized.  These new ones have a strict schedule.  I had some in bins, some in cupboards, some in baskets, some in the hall closet.  These are all current and necessary meds.  When all pulled out, they fill up two counters.

 It took me over two hours to get it all figured out.  I have a good system now for all the IV and plasma supplies so I feel settled.

Oh, this was an amazing thing...Dr. Gundlapalli texted me out of the blue, concerned about the kids.  He moved our August 24th appointment to the 11th. When he heard that Shelbie has Epilepsy, he is going to increase her plasma dose again which is never easy and means longer transfusion time but I know it has to be done.  My sister will be here which is a bummer but hopefully she won't mind a field trip to the Great and Spacious State of Utah.  This doctor has 3 or 4 medical degrees and a Doctorate degree in Philosophy.  I love him!  He is so kind and thoughtful.

To wrap up the week, I had my Saturday night tradition of sitting by the fire to decompress by myself.  Shelbie and her new friend were going to come out and join me but boys showed up and well, you can guess that meant the young men became way more interesting than the mid-century mom in her camo leggings roasting marshmallows alone.  Ha ha...I love this life even though at times, it may not sound that way.

Tonight, the kids are hosting a YSA game night.  There are so many young adults here and my house is filled with laughter and joy and that makes me happy!  I'm going to call it a night and spoon with the dog and fall asleep to the sounds of my kids enjoying a moment without a care in the world.

Shelbie's monitor comes this week.  I lost two big design jobs I was suppose to start tomorrow but I think God knows, I need a little break to figure out our new normal of monitoring so it's all good.  He's got this.  Spencer got a job in Utah this week!! Just out of the blue and a kid from church thinks he can fix his car for him and it won't cost as much as he has been quoted.  Spencer will be building fences in Salt Lake for a few days so he's pretty happy to have something meaningful to do...but he is suppose to start his new meds for his heart.  He needs to be monitored while he gets them started because they could drop his heart rate too low so he needs to be on them for a few days to see how he will respond...I guess we will start when he gets home.

Saturday, July 22, 2017

The Art of Insanity

One thing I hear all the time...All. The. Time!!

"Well, what else is new, at least you are use to this."  This is the comment when people find out we are still dealing with 'stuff'.  Health stuff.

NO.  We aren't use to this.  We will never be use to this and if anything, every day is getting harder.

The worst part is, half the time we don't realize the toll this is taking until it all explodes in a completely unsuspecting moment.

Sometimes, those moments happen in a hospital parking garage at 3:00 in the afternoon when people are coming and going but there you stand in the middle of the road, falling to pieces and unable to form a logical thought.

Not my finest moment.  After 10 minutes of melting down, I was able to call Spencer for help.  He had just driven off after his appointment to come home.  I had parked my car just three cars down from his but it wasn't there.  I ran up and down the two aisles of the hospital parking garage and my car was nowhere to be found.

I was in a panic and so confused.

He came back and found me and still, it took us 10 minutes of driving around before I found my car.  Even the panic button wasn't working to help me find it.  Finally, I opened the map on my phone and because I have Bluetooth, my car location showed up on the map and that is how I found it.  We had both forgotten that in the middle of our hospital visit, I had moved my car...Long story!

Anyways, it's times like this when I realize just how little we are holding ourselves together with.

This was my first time back with Spencer to Cardiology since I watched him die last Fall and be brought back to life.  He has had many appointments but each time, we had conflicts with the other kids and their appointments so Spencer went alone.   Earlier in the day, Spencer asked if I was going to be okay going back to the room where it all happened. I didn't think it would affect me but it did.  It did even before I stood in the middle of the parking garage where I couldn't make sense of my life.

It was a hard day!  Spencer has lost 8 pounds!  He's been lifting weights and when he does that, he usually puts on a ton of weight but not this time.  It doesn't make sense.  I'm a little nervous about where things are going with him.  When he took off his shirt to get the EKG, you could see every muscle in his body.  He looked ripped!  I mentioned that to him.  He reminded me that he has not one ounce of fat left so all you can ever see is muscle and bone.  That gave me a completely different perspective.

It was hard to see a half a ream of paper with his heart beat printed on it...several sheets of notes when his heart was not beating regularly.  We are going to keep trying medications.  They changed the parameters of the recorder because they think they are missing data from when his heart rate drops.

I asked about a pace maker and he said, "We only consider a pacemaker when the heart rate is too slow, below 60 bpm, even 50 bpm."

"So, you have pages and pages of data when Spencer's heart rate is consistently in the 30's...we don't have enough data yet?"

And then the classic response...."Well, Lance Armstrong had a resting heart rate in the 40's."

Great!!! Lance Armstrong isn't my son!  Lance Armstrong still had a heart rate 10-15 bpm higher than my kids.  Lance Armstrong was a conditioned athlete!  My kids are just trying to climb the stairs to get to their bedroom at the end of the day!

Or...well it's normal for your heart rate to be a little lower in the morning.  40 bpm lower?

I'm not buying it.  I told him we would do three more months of medication and if the picture doesn't change we start to see improvement than we either need a new doctor, a new plan...something but we aren't going to keep playing this game.  The doctor seemed okay with that.

Still...I'm not okay with it.  It's frustrating.


Thursday, July 20, 2017


Every day is full of surprises!

Every day, I have learned to find God in the most unsuspecting places.

Every day, I lay in bed and wonder how such a place of heartache and suffering can be so beautiful and sacred.

Last Saturday I was at Walmart with Shelbie and Sam.  I ran into an old acquaintance.  We were in the same ward probably 18 years ago.  She had a baby who was born with Downs Syndrome and I remember her grief.  Her husband held, what I perceived to be, an important position at the University.  They were very well known and very well respected in the community.  They were, by all of the ridiculous social standards, the perfect family.

When their son was born, it shook their foundation, as one could imagine.  I remember spending time with her listening and trying to help them cope.  They moved out of the area shortly after this event.

Saturday, it was good to see her.  She was with her son.  She came up to me and put her arm on my shoulder and said, "Do you remember me?"

Of course I did.  "I never had the chance to tell you that you gave me the best advice I ever received when my son was born."

"I did?  I'm not sure I remember what that was?"

"You told me it was okay to cry and how much love he would bring to our family.  You were so right!"

When we left, Sam couldn't stop laughing his head off and telling Shelbie..."Did you hear that lady? She said mom gave her the advice to cry!!"  Those two were laughing so hard..."Nice one mom!  Way to inspire people!"  We had a good laugh.

What they didn't realize is that this family was thriving in their perfection.  The community had set them above any realistic standard.  They were afraid to grieve when their entire world was looking at them and how they would manage this.

Saturday for me, was a really hard day.  My brief encounter with her was not by chance.  I needed to hear those words for myself.  When we got home, Spencer could tell I was struggling and said, "Mom, I think you need to go lay down for a bit!"

That moment was abundant with love, tender reminders from people so long ago.  Crying and sleeping was exactly what I needed to do just let out all the unspoken sorrows in tears. How beautiful that Heavenly Father saw fit to remind me of something so many years ago.  Incidentally, my friend is thriving!  I have always been so impressed with the way she handles her life.  She has spoken at many events that I have listened to over the years.

Yesterday, I got to go visiting teaching.  What a blessing it is to enter the homes of three sisters and share their load, their own personal challenges.  What a blessing it is to learn from each other and share experiences.  They each have their cross to bear, hard things they are facing, doing, experiencing.  It felt like an edge to lean upon...a place to rest;  holy moment when you remember why it is you do what you do and the divine creation of mothers.

When it was nearly all said and done, I got a call from a client.  I met with them at their home and was gifted an amazing, thoughtful gift of money, more than I could ever expect, imagine or felt deserving of.  I was speechless.  I couldn't speak.  I knew if I opened my mouth, a world of hurt would tumble out and it would be messy.  I don't like messy and honestly, I don't like being seen.  I thrive in living under the radar.  Without a doubt, God was in that overwhelming gift.  That money will help pay for the monitor for Shelbie, gas and food for all these trips to Salt Lake and maybe even, I will take my kids to a movie and not worry about how many extra hours I will have to work to cover the cost of fun.

We have so much, so many blessings each day.  God truly is in the details...even when it seems we are going under, he's there.


Wednesday, July 19, 2017

All That Life Requires

I feel like this title should start...

Captain's Log...

Because, seriously, we are knee deep in uncharted waters.  It's been an interesting week thus far. I've been living my life from as far off on the fringes as one can get and still be somewhat engaged or at least appear to be engaged.  It's an art I have come to perfect!

It is an intriguing place to be.  I have become an expert in being unhinged from the emotion of it all yet, at the same time, side stepping my way into the issue and poking it with a long stick because I can't believe this is all real but then without warning, the tears can burst forth and I can't even really name one single thing that upsets's just the combination of it all.

I find it so fascinating to keep a distance and watch how we are all dealing with this latest news.

For one thing, we have yet to talk about it.  We are the highest functioning picture of dysfunction you will ever meet!  Hands down!  Corner on the market...special...we give new meaning to dysfunctional.

Shelbie hasn't talked about it.
I won't talk about it.
Sam has been busy moving home and finishing finals...which I completely forgot to help him move and clean his apartment! As for Spencer, he has been the most proactive about things on his own.  He has been doing some research and determined that we all needed to start the Ketogenic diet, known to help with seizures.  He has been very rigid in his quest to start this diet; certain that it is the key to fixing not only his problems but Shelbie's too.

I don't think this is going to be the best diet for us day of him being on it and he was about to pass out!  He had a car full of girls waiting for him and I had a house full of men trying to move furniture into my basement that didn't fit...and he is barely able to stand and in a panic about what to do.  I was a bit scattered and said, "Spencer, seriously!  Eat something!  You need carbs!  I went to the kitchen and the only thing I could think to grab was an unopened bag of chocolate chips.  I pushed them into his hands and said, "Eat these!"  I'm not even sure his response but he slipped out to his car and I didn't see him again until midnight.

We haven't started the medication...I have a million excuses why we can't start it until Monday.  For one thing, I have to find a new cabinet to put all this medication in.  Our IV supplies are out of control and spilling out of their assigned place.  AND...there is a 25 page leaflet the pharmacy gave me on the side effects of this medication.  It freaks me out.  The most common symptoms actually sound a lot like dying!

We haven't talked about the whole issue of driving privileges.  I wish the doctor would have made a clear statement about that.  Now, I have to be the one to take it away and enforce it.  How does a young adult with a thriving business that requires travel...get to her appointments?

I have not been watching her as closely as I was instructed to.  In fact, I am doing the opposite.  When I think about how dramatically life is going to change, I get anxious and upset and I feel so much trauma from the past.  This is not to say that when I leave for meetings, I am not scared to death of leaving her alone because I am but avoidance of all those feelings is the name of the game.  I am so good at avoidance, I completely forgot to start her transfusion this morning so I'll be starting it now...another long night.

I am doing what I do best...running.  Running away from all these hard things, refusing to address any of it, making excuses, hoping it will go away.

I just don't know where to start.  I don't know how I am going to continue taking care of my kids.

Every so often, I mention to Shelbie, "You know we have to talk about this diagnosis.  It's going to be a hard talk but we have to do it."

"I know.  Not today."

So, for now...we are getting by, dealing with things individually the best we can.  Honestly, we are so distant, distracted and completely in-congruent and I feel the undertow so very close to the surface.  I have gone to great lengths to be aloof and unaffected by it all but the tears are so very close so I run even farther from connecting with anyone or anything.

I'm not ready to accept all that life will soon require of me.  I still can't really believe that I have to watch my kids go through this.

In a moment of irony, University Hospital called me tonight while I was visiting teaching.  They left a voicemail as they do...Spencer's heart is awry...when they see a certain pattern of rhythm, they call me to find out what he is doing and basically, if he is still breathing...which clearly, they know better than me since they are watching his heartbeat in real time.  Spencer is in Utah tonight.  I don't even have it in me to call and see if he's okay and his computer base that goes with his  heart monitor is at home so without his device beside the base, I can't even download the information they need to look closer at the event.  There's always an EVENT around here!  Sheesh!

We need to get through cardiology this week and Saturday, I'm hoping to get a little clarity at the temple while I'm there and maybe take a deep breath.  Shelbie's monitors should be arriving soon and that will be the next big thing to figure out.


Monday, July 17, 2017

Untitled Part 2

I guess this post is part 2 of our Neurology appointment from last week...

In addition to the news of the seizure disorder, it was confirmed that Shelbie has a large benign tumor in the left temporal lobe of her brain.  I have never quite understood how a doctor can look at a brain tumor and say, "Well, don't worry about it."

Really?  Because how is that possible? It makes me kind of mad...well, really mad and part of me feels like I should have gotten mad about 25 years ago when it didn't make sense my SIDS baby continued to live...can you really call it SIDS?  And night after night for 2 years of monitoring when she couldn't maintain a normal heart rate or respiration rate...I wasn't suppose to worry about that either? And febrile seizures don't happen at 99 degrees...

I guess after letting this news settle in for a few days, I am now circling around to the anger side of grieving.  This is the ugly part of the process.  This is where there are no earthly answers for the questions I have, apparently.   It's kind of a baron place; lonely. Where you really want to pin someone to the ground and scream at them all the otherness you feel until they feel what you feel. This is not my favorite place to be.  But welcome...glad you could make it to the madness.

Anyways... I'm done with the phrase "Don't worry about."  So, I asked her to explain how a large brain tumor in the left side of the brain is nothing to worry about?

She explained that if you have to have a brain tumor, you want one in the 'Nevada' parts of the brain, not the 'New York' parts of the brain.  Shelbie's tumor is in Nevada; there is stuff going on but not important brain function.  I can't help but think that God surely, didn't just throw in parts of our body that have absolutely no good use or maybe he did.  Maybe he threw in a bunch of extra brain tissue so there was plenty of room for important stuff and brain tumors.  Smart guy!!

 We are still waiting to be scheduled for the PET scan of her body and brain to see if there is new growth in the Nevada Tumor and make sure it hasn't invited 'friends'.   They will also get another look at her dwindling white matter, the hippocampus damage and the AVM, they think they saw which could really cause some stroke problems.

We also discussed more about Shelbie's Flattened Pituitary Gland.  Again,  a few months ago when I heard about this, they said, "Don't worry about it, it isn't causing any problems."

So, again, last week, I said, "Tell me again how an empty or flat pituitary gland isn't causing problems when God designed them to be a completely different shape than flat?"

"Well, she is fine, that's why."
"She's not fine.  She's been on thyroid replacement hormone since she was 5 years old."
"Because she has Hashimoto's Disesase."
"How do we know she actually has that.  No one did any ultrasound, imaging, they just saw that she had zero thyroid hormone at age 5 and made assumptions.  How do we know she has no hormone because of her flattened pituitary gland?  How do we know her hot flashes aren't also caused by this?"
" have a point. I didn't realize they hadn't worked her up for Hashimoto antibodies."

She wrote orders for a ton of blood work but it was such a seriously difficult appointment to get through that by the time we left the exam room, we were both shell shocked and Shelbie refused to walk down to the lab and have a blood draw.  She just needed to get out of there so that testing will have to wait until the PET scan.

Since her leg is still swollen with more enlarged lymph nodes, we are back to the question...does she have lymphoma now?  Again, the PET scan is also being ordered to rule that out.  Seems like this will be our yearly dilemma.

I am fully expecting that blood test, when we get it, to come back normal for Hashimoto's.  I know in my gut that her pituitary gland is faulty and the cause of her thyroid fact, I am willing to bet someone money that I am right.

This week, we have another trip to Salt Lake...Spencer has cardiology.  I sure hope my temper simmers a little because I am so tired of getting the monthly reports from his monitoring telling me that his heart was without a beat for 8 seconds, twice in the past month, his heart rate was 250 bpm another time and in the next 10 seconds dropped to 22 bpm...but let's continue to observe.  I'm so done with the run around!  We have plenty of proof that his body cannot regulate his heart rhythm. It's just time for a pace maker or defibrillator.  They have no clue how difficult it is to live like this. No clue.


Saturday, July 15, 2017

Blissful thinking

This has just been a week of stuff...lots of hard stuff so it only seemed fitting to finish things off with a trip to the dentist.  I hate the dentist.  I have always hated the dentist.  I will always hate the dentist.

I had to have a root canal.

I figured I could either be upset and cranky and whine and complain or try to make the best of it.

So...I tried to make the best of it.

I am not very good at taking care of myself and I'm especially not good at asking other people to help me take care of myself or take care of anything really so, when the dental assistants ask if I need anything, I always say, "I'm fine."

Not yesterday.  Nope. I am a tired and cranky woman, on Prednisone, with an abscess in my ear to boot!

Just before I left for the dentist, I dug through the sofa cushions to find some left over Valium.  I was really intent on making this a good experience! They say that attitude is everything!  It's not what happens to you, but how you choose to deal with it that matters.  So, I was going to put these positive affirmations to the test!

My dentist office is really a happy, cheerful place.  I actually like the people who work there, they aren't into shame and guilt techniques like most dental people are.  I really get annoyed when I go to a doctor or dentist and get shamed because I only flossed two days before my appointment!  Seriously, that has happened.  It sent me to therapy for like 3.5 years!

When they asked if I wanted the lights dimmed...I said yes.  When they asked if I wanted happy gas, I said, "Yes PLEASE!"  But then...she said, what flavor of gas?


Is that a real thing?  YES it is!  So of course, I chose Pina Colada!  And the mask was the same color as my outfit so that was a bonus!  I put my headphones on with my Classical tunes to lower my heart rate and brain waves; Bach with Ocean sounds...Happy Gas with Pina Colada flavor and this dental appointment was already looking up!

My dentist is really smart because after I  was all gassed up, a soft pillow under my head, the lights dimmed, he sends in the finance girl to tell you the cost of the procedure and get consent.

"Hey Kath, so today's visit is going to cost you $27,000.00 does that sound okay?  We will need payment in full before you leave? Okay?"

Me: "Alright!  Sounds good!"  That sounded horrible actually, but what do I care?  What's another $27,000 in the grand scheme of things? She didn't say when I had to leave so I assumed it might be alright if I just laid there for  10 or 15 years on happy gas until I had the money to pay my debt and go home!  In all seriousness, I felt my blood pressure rising at the thought of paying for this so I simply said, "Do you mind turning the gas up?"  Life's too short to worry about money at the time of a root canal.

The other reason I love my dentist is that he is always a little behind.  That just meant more time to spend on my little imaginary island getaway.  It was working out well for me.  As luck would have it, the hygienist that got me numb was amazing!  I didn't feel a thing!  I'm being serious here.

Finally, things get started, he puts these foam blocks in my mouth so I don't even have to work to keep my mouth open and it's going so well.  A girl comes into our space and tells the doc that some old guy came in with a chip in his gold crown and could he take a look. I assumed he was an old guy because he had a gold crown.  Gosh, how much do gold crowns even run?  I bet more than $27,000!

 My dentist said how he really needed to get me done first.  Through my mouthful of stuff, I said, "donnevnworygohelthguy."  (Don't worry, go help the guy.  I'm not in a rush....that's what I said.) because of course, I'm really enjoying Pina Colada gas.

He comes back...then another walk in...then he leaves cause I said he should really take care of her.

There was one little problem.  This prednisone and antibiotic crap I'm on is making me retain water like crazy!  I had this suspicion that as soon as they lay me back, I was going to have to pee...and that is what happened, so every time, he left, I was up.  The first time, the assistant said, "Here, let me take the paper bib off."

"I don't care!  I have absolutely zero pride left." and I stumbled my way, falling into the corners of every doorway till I reached the bathroom...that's the valium, happy gas combo working.

"Are you going to be okay?"  She asked

LOL...I am such a weirdo.  Might explain why I'm still single.

He comes back and says how super patient I am and he so appreciates me being such an easy going patient!  And, they comp my happy gas bill because I was so accommodating so I call it a win/win.  I was there over 3 hours but who cares.  It was a little slice of paradise. The best dental experience of my life and I can't wait to go back!!

Today...what I wouldn't give for a little pina colada happy gas!

Tomorrow, I will finish posting about the crappy news this week, cause...there's more I didn't get to.


Thursday, July 13, 2017


I have had a lot of time to think about what to title this post.  I'm still undecided.  Here are some options...

This is just a test.
Full Circle
The wonders of God
Missing pieces
Borrowed Time

Shelbie had her neurology appointment yesterday.  About a month ago, a nurse called to tell me our neurologist wanted to see Shelbie.  That has rarely happened, that a doctor calls me to see my kids, so there was no hesitation in my response.

We waited over an hour and a half for the doctor to get to our room.  We kept occupied with Snapchat filters, GIFs and stupid Memes.  Everything seemed funny but I had the worst gnawing feeling that all that was about to change.

The doctor came and in said, "So, how are you handling this latest development and do you have any questions about Epilepsy?"

She was talking a mile a minute and describing in detail how she arrived at this diagnosis.  "Any questions?"  She paused to ask.

I remembered one time, I was on a hike and the side of the mountain was feet and feet of loose shale.  I remembered that feeling of trying to claw my way up but never quite making it from the spot I kept sinking to.  And in that moment, I was clawing my way out of her words to find something solid to hold on to, something that had more undertones of hope than the word Epilepsy.   I remember looking at Shelbie as if from the wrong end of a telescope, though her face was less than a foot from mine.  Her eyes fell distant across the room. We both struggled to stay in the moment.

I looked at her with the most intent look of wonder, "I'm so sorry!  I don't even know what you are saying right now! What are you talking about?"

There has been a glitch in our MyChart.  She sent me a note after she had held a special meeting with a selected team of Neurologists who all specialized in a different part of the brain.  They all reviewed Shelbie's scans from the past year.  They all had time to make their own assessments.  One doctor realized that no one had checked the volumes of the Hippocampus.  He took it upon himself to do that as well as study in more depth, her PET scan from last March when they thought she had lymphoma.

That is where the evidence was found.  She has asymmetrical volumes in the Hippocampus...the deepest part of the brain.  This is the tell tale sign of deep brain seizures and explains why the EEG is always only measures the first 1" of brain activity.  There were hypersensitivities as well, indicating that brain damage has occurred.  He confirmed a large benign mass in the left temporal lobe, a couple of enlarged lymph nodes, what they think is an AVM- venous malformation as well.

Our doctors note to me explained all that.  I was never notified and even going through all her charts, the note was never there in MyChart.  So, she thought we had already been living with this news but it was a complete shock.

Shelbie has not had strokes or TIA's, she has been having seizures.  They suspect that she is having multiple seizures a week, even a day.  The episodes when Shelbie is awakened in the night, unable to breathe is a seizure with loss of consciousness.

So...It's been a hard day.  I can't even bear to say the 'E' word.  Technically, her condition is called Complex Partial Seizure Disorder.  They happen in the Hippocampus, the area responsible for respiration, heart rate, memory, co ordination and the autonomic nervous system.

This, in and of itself is hard news.  It's hard for anyone to get this news and all day, I have thought about this.  It has consumed me.

Last night, in the darkest hours before the sun came up, I looked up to Heaven and with a pleading kind of sorrow begged to know how I was going to manage this; how we were going to manage this? Without hesitation, Heaven answered back..

'You have been handling this.  For 25 years, you have been handling this and you will continue to handle this and I will continue to lead you along with the same Angels I have sent to protect her on this journey so far!'

I can not argue with that!  The only thing that has changed is now we know, what we haven't has a name.

My heart is so full of unspoken sorrows, awe and redemption.  It isn't just about a name.  The mind is a powerful thing.  No matter how hard you try to keep a peace within the stirrings of holiness and answers and heavenly understanding, it runs amok.  It drags you into dark places you shouldn't be, without permission, without regard for the havoc it will leave behind.

I have journeyed through Shelbie's life today.  I have relived every single puzzling moment that has now fallen into this place that finally makes sense.  It's like looking at a macro picture of an everyday object yet seems like nothing familiar until you expand your view, pan out...and then you see the whole of it.  Ahhh...a recognition.  An Awe kind of moment..."So that's what that was!!"

Today, I was in those late night moments when she was just two weeks old and lifeless in her bassinet.  I heard my voice, screaming at her tiny, angel face to just come back.  Please come back to me!  I felt my throat burn and tears streamed down my face and it was a trauma just as fresh at was in the moment so long ago.

Today, I felt the compression of her ribs under my hands as she lay on a concrete floor in the basement of some house in the far off country, how my air filled her 2 year old lungs. How I cried between breaths.  How my head was dizzy.  How Spencer, who was stirring in my 36 week pregnant belly seemed to anxious to get out.

Today, I saw how the lights of the ambulance chased their way along the thin walls of our mobile home when she was four and how Spencer tried to catch them as they moved across the wall of the living room where his sister was unresponsive.

All day, memories that I have tried so hard to care for at a distance, came pouring out and it has been hard.

Today, I wanted to scream at all the people who have ever doubted me, accused me, could never understand how deeply sad this journey has made me.  Today, I remembered how the social worker wanted to put video tapes in my house because how could these children be so sick under my care.  Today, I remembered the dietician and her accusations that I didn't feed my children.  Today I remembered the friends who walked away because there was always someone sick.  Always something traumatic.  Today I remembered each and every person who said I needed to stop chasing problems.  Today, the hurtful words both spoken and unspoken from a myriad of people who said I was making this up, molehills into mountains... played like an unstoppable reel in my head.

Today, was redemption.  Today, there was beauty for ashes...oils of healing in the suffering. Today, all the persecution I have faced, the friends who left, the doctors, the social workers, the husband, the people who were suppose to care but could only criticize...Today, they didn't matter to me anymore though my heart aches for them all the same; but it still aches for me.

I guess the important thing I came up with today is that Shelbie is a work of God.  Evidence that we are here with a plan and a purpose and no creation or destruction of man will ever trump what God can do.

Today, I am reminded that God is a God of lasting miracles.  He has preserved and protected my daughter until science could catch up with us.

Today I am reminded that God has carried us so far, even on borrowed time, breaths from Heaven, angels round about.

Today I feel unworthy of His blessings.

Today will be counted as one of the holiest of holy moments I have felt.  Today, I am overwhelmed.

Today, I have lived and felt every word to this song by Hilary Weeks, He'll Carry You

He knows your heart
He knows your pain
He knows the strength it took just to simply breathe today
He sees the tears that you cry
He knows your soul is aching to know why
He hears your prayers each humble word
When you said you couldn't face another day he understood
He knows the path that you will find
Though you felt alone he's never left your side


He knew there'd be moments when no earthly words
Could 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
He'll bring you peace and leave you hope
And in the darkest night he'll comfort you
Until you know the sun will rise and each new day
You will have the strength to live again


And when there are moments 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
He hears you when you're crying in the night
He hears you when your soul longs to find
Till the morning will come
And the light of the dawn reassures


That in the moments 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

Today, I lived and felt every word of this song that I love so much! 

I am grateful for a Father in Heaven who has stayed close today. There has been no human to see what I have seen today, to have walked where I have walked or to know what I have gone through and am going through.  There are no earthly words to take away my sorrows and that is okay.

Remember, this place was circled on a map long ago.  The Beloved has knelt here waiting for us to arrive and arrive we have.  I think we will sit here for a moment and rest.


Tuesday, July 11, 2017


Adulting is hard!

I can see why it should only be attempted by grownups!

All graduating seniors should get a life packet called..."So you want to be an adult!" I would have enjoyed something like that.  It would have been nice if they also included a few parting gifts from the magical world of 'blame it on others.'  I'm not sure what those gifts would be, maybe some Rocky Road candy bars with a chaser of Mountain Dew because really, it's not all bad.  Sometimes, life is like the dewy hills on green mountain with little streams chasing rainbows.  I think a soundtrack for life would be nice...a collection of songs to ease you into adulthood...

Don't Worry Be Happy- Bobby McFerrin
It's a Hard Knock Life- Annie
I Will Survive- Gloria Gaynor
If You're Going Through Hell-Rodney Atkins
Only the Lonely-Roy Orbison
It's Not Easy Being Green- Kermit...because sometimes you get sick. get it gist. Today has been a really, crappy day and I'd rather not talk about it, so this humor is my attempt to convince myself that everything is fine!!!

So, now my point...

I bought this...on the weekend because I have a neighbor problem.  Just kidding.  I have a weed problem but I partly blame my neighbors for ignoring their weed patch at the back of their yard.  I bet I stood in Walmart on Saturday for 45 minutes trying to decide which product to buy.  There was a married couple beside me arguing about weed killers and it made me sooooo glad, I just get to argue with myself.  I think I got distracted by the joy I felt knowing that wasn't me...that I thought I was buying a product called, "Spray this everywhere and it will magically only kill the weeds and leave everything else beautiful and green!"

So, that's what I did!  Sprayed it everywhere!  Boy, it says it works in like 3 hours and it sure does! My backyard is now perfectly dead!!

Thanks to my friend Gnorm for posing with the product.  If you follow me on Instagram, you will know he's my weekend pal.  We have our Friday/Saturday night bonfires in the backyard together.  We catch up on what we did, relax and he's always happy and never talks smack to me...unlike the married couple in the weed aisle at Walmart.

In my defense, despite looking like the picture of health, I have an abscess in my ear.  The ear with all the prosthetic bones and it is not fun when titanium gets infected.  I went to the doctor three months ago because I have been getting worse but he said until I had my diet, sleep, and stress under control, he wouldn't treat me...

I drove North to a town I have never been to and saw a doctor yesterday...too bad no one listened to me 3 months ago.  Now, it's a mad dash to stop the infection before it hits what little brain matter I have left.  Worst of all...I had to start Prednisone!  That is an evil, evil drug.  It makes you think that the world is running out of food...but then, I am taking some huge doses of antibiotics that make me think I'm dying from nausea alone.  So, it's Diet Coke for the win!  I had that for breakfast and we are having it for dinner.

Now, excuse me, someone wants seconds so I'm off to crack another 2 liter!!  And remember, most weed killers really aren't magical!


Monday, July 10, 2017

The Butter Patch

Related imageIt's almost a Sunday night tradition that Sam and I go long boarding.  I love long boarding more than I ever thought I would, and odd, it's true for someone of my mid-century age.  There is one part on our path that Sam calls the Butter Patch.  It's in the middle of the road and the asphalt is super smooth and almost slick, no rocks!

Every time we approach the area, Sam hollers back to me..."MOM!! The butter patch!  Hit it!"
Each time, I chicken out.  It's in the middle of the road and I have yet to build some confidence in my long boarding skills and ability to zip around.  The way my luck has been going, I'd meet the front end of a garbage truck.

But, last Sunday, I did it!  I hit the butter patch and Sam was's a sweet spot for sure.

I've been thinking about the butter patch this past week.

I know to those reading the blog, it doesn't seem like we ever enjoy a 'butter patch'; smooth sailing in life, but we do.  The past few months have been a butter patch of sorts.  Sometimes, I have to use my creative mind to really see that but really, it has been so much worse before.  Then again, sometimes, the butter patch is just that...being grateful it isn't as bad as it has been.

As we head into this week, that is on the other side of the butter patch,  I hope I can remember these sweet spots of life...

We start our old habits of weekly commutes to Salt Lake.

Sam came to me on Saturday, pretty concerned about his latest symptoms.  Sam is my kid that is pretty attuned to his body.  He has been having continual issues of dizziness whenever he moves his head.  My first worry is that he is building up cerebral spinal fluid due to his Chiari Malformation.  I've been taking the 'wait and see' approach but on Saturday, he asked if he could see the doctor about it.  When Sam actually asks to see a doctor, it's a big deal.

Shelbie sent me pictures from California of her bad leg.  I wanted her to go to the ER but that didn't work out.  I picked her up yesterday in Salt Lake and it is pretty bad.  This morning, when she woke up, she found a couple of large lumps in her calf.  I'm pretty sure it isn't a blood clot but there is definitely a blockage in her lymphatic system.  It could be anything.

My two biggest concerns are heart and the myriad of granulomas that are all twisted up in her organs.  One could be growing and putting pressure on the vessels that carry lymph fluid.  She is really itchy too, probably because the lymph fluid is just sitting in her leg.  It's a mess.

And then there is Spencer.  His feet are so bad.  He walks like a 90 year old.  He is in so much pain yet he refuses to stop and try to let them heal.  In fact, he is in Utah with friends but today he actually had a working job interview with a big video editor.  He helped do a video shoot for James the Mormon.  After 10 hours on his feet, he had to excuse himself.  I don't even want to talk about his heart...I just wish they would stop this nonsense of monitoring and put a stupid pace maker or defibrillator in  once and for all.  At first, it seemed like the Loop Recorder would bring some peace and assure us that things were okay.  All it really does it keep us on the edge of our seat.

So, this week, we start with Neuroimmunology and Shelbie.  I am hoping that she will consent to taking on Sam as well.  I really want to seriously consider getting him ready for the brain malformation revision.  I always have the highest hopes so it's with caution I let that thought go very far.

Here we go!  I really hope that somewhere along the line, we can hit our coveted Butter Patch and just for a day, or even an hour, sail on through.


Friday, July 7, 2017

So this is what breathing feels like...

 This is where I got to work this afternoon...Technically, this is where I escaped to after I was done my work in Island Park.  This is Elk Lake in Lima, Montana.  Tucked away in a little forgotten corner of the Red Rock Mountains.

I was lucky enough to have been invited to spend the day with our good friends who were having a family reunion there.They reserve the entire place, a cabin for each family unit and gourmet breakfasts and dinners, canoes, paddle boards, toys and a chain of beautiful lakes for fishing and floating.  I couldn't be there all day but a couple of hours late this afternoon was the perfect teaser before I had to make the long drive home to start my evening job.

When I arrived, everyone was gone on some activities up in the mountains so I made myself comfortable on this dock with my new favorite book.  There is no cell service for miles.  No technology.  No distractions at the tip of your fingers...just this!  Just pure mountain air, with nothing but the birds to keep you company!  It was beautiful and it was a stolen moment in Heaven.

As the sun became a little too warm, I headed to the main cabin, nestled into a rocker on the shady porch and just rocked.  And, there I sat, all alone with this view staring back at me!

Eventually, my friends came back to the cabins and it was so good to see them.  They are my parent's ages and their children are so great!  I don't see their kids very often but we always seem to have a great laugh and enjoy one another's company when we do get together. They are salt of the earth kind of people and an amazing blessing to the kids and I. We met Neil and Kerma at the hospital two years ago but it's like we've known them forever! 

We sat on the porch, together and rocked.  We talked.  We laughed.  We drank Diet Coke out of frosty mugs!  We watched the clouds roll in, the rain come down and birds busy themselves with important things that birds do and there was absolutely nothing for me to do, nothing for me to be, nothing for me to fix, nothing for me to say, nothing for me to run from.  Just nothing for me to do but breathe.

Oh, how I love breathing.  I sometimes forget to do that.  I always forget how much I love doing the simple breathing. 

It feels like miles and miles away from civilization.  You are literally alone in this vast space of God's creation.  As I waved goodbye I felt this place tugging on me to stay.  Something about it.  I love being in places that are bigger than me.  Bigger than my world that so often feels overwhelming and spills out all over the place though I try so hard to keep it contained.

This was my drive home...a dirt road for miles and nothing but all this as far as your eye can see.  

I opened my window and let the mountain air fill my car. 

I met some new friends, even stopped to say hi.  She seemed happy to see I wasn't completely alone.  I named her Margaret.

I stopped at this little creek.  The smell of sage brush and wild rose chased the breeze that blew in and tickled the daisies. I sat on the banks, set my feet in the cool water and felt the loneliness of such a place without another soul within miles, yet it was consoling at the same time and felt so good.  I could have stayed here all night.  I never have room to think.  I never have time to think.  For a few minutes, I just thought about my life.  You don't really feel the weight of what you carry until you set it down for just a minute.  I set that weight beside me and I let the flood of emotions spill out and into the river carrying the left over mountain winter, to the green edges of summer.  There was so much to be considered in that moment. 

So that was my day.  A good day.  A peaceful day...a day I was reminded what it felt like to breathe.

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