Friday, September 14, 2018

Out to the porch

Today was an impossibly long and difficult day!

It was move in day for Sam.  He got out the door way before I was ready because he wanted to get checked in to his apartment and reserve his room with his best friend.   I figured I would catch up with him after the paperwork was done.

He came home not too long after and flopped down on my bed.  He fell like a brick and I asked him what was wrong.  We played 20 questions for 45 minutes because he likes to bottle things up and make me work for answers...I still didn't get any answers but suggested we go for breakfast.  On our way, I stopped by his apartment so I could take a look and make a list of things he would need that we didn't already have.

I was horrified when I walked in his apartment.  It was like walking into a video game of Halo.  Gaming posters covered every wall.  The pillows on the sofas were handmade with symbols of science fiction, killing spree video games.  One wall was filled with gaming systems and technology.  I bet there was over $5000 in electronics. I walked back to his assigned room and the first thing I saw was a mattress covered in urine stains and dried blood.  There was only one bathroom for 6 guys and the vanity was no more than 30" wide.

"NOPE!!  You are not living here Sam.  Grab your stuff, we're out of here.  No way! I will forfeit the $1400 this rat trap costs and you can live at home."  I was furious! Steaming!  Fuming!!  It was the proverbial last straw to this week.

His roommate called and had a similar sentiment so we went down to the manager's office to figure out what we could do.  Oddly enough, the owners of this complex had just purchased another complex a few weeks ago and two guys from that one,  wanted to be at the one Sam was at.  We went over to look at that as an option and honestly, it was only marginally better and by that, I mean it had a clean mattress.  There was food in the fridge that had been there since June- because that is what the expiration dates were.  The milk expired June 9th.  The container was like a round ball, it was so fermented, ready to explode.  Two of the beds were covered in trash; old food, soda cans.  I was appalled.  As we walked through with the managers, I pointed out that the place a disgusting, vile pit...except I didn't use those words exactly...that was my inside voice.

Long story short...they really needed Sam and his friend to switch complexes because of a clerical error on their part.  So, I said I wanted the flooring replaced by next week and I wanted it professionally cleaned before the boys moved in and new desks.  They agreed to that!  Every apartment in the complex had new flooring but the one they were going to put Sam in so that's why I asked for that.  ( I wasn't just being 'extra')  And, the desk they provided was falling apart and 200 years old and by contract, they are suppose to provide a desk for each student.  The apartment had never been cleaned after the students left 7 weeks ago.  Not only that, they are missing doors and one of the toilets is broken.  Such a poor excuse for housing when they charge sooooo much money!

It took no less than 5 hours to deal with that mess.  I helped Sam move his stuff in tonight and it was clean and looked much better. I met one of their roommates.  He's an odd kid.  One of the past students from last semester left about $1000 in power tools under the bed along with a ton of other weird things to leave behind.  This kid asked Sam and his friend if they wanted to take sexy pictures of themselves with the power tools before selling it all on Ebay and splitting the profits!!  Okay!!! That was the last straw!  I wasn't sure if I was going to burst into tears or punch the kid in the throat.  I decided to give Sam a hug and a kiss and leave...As I walked out, I noticed...more video game crap!  I am scared for the future of this country!

In the midst of this intense drama and anxiety, I had clients calling me in a crisis mode and nurses from the University Hospital trying to get Shelbie scheduled for a heart procedure next week.  Next week!!! Another one!  Ugh...I'll save those stories for another day.  I am mentally and emotionally spent...done!  Hopefully Sam survives his first night without his strange roommate doing anything weird!  I whispered in his ear as I kissed him goodbye...keep your bedroom door locked!  I was kind of kidding I think....sort of.

If you are the prayer offering kind of person reading this...Utah County is in serious trouble.  Spencer sent me a picture tonight of the flames from a massive forest fire, from his bedroom window.  It's that close to where he lives.  I'm not sure if they will be doing evacuations but I'm a little nervous about that.  They are advising people to stay indoors because the air quality is dangerous.  Spencer has such fragile lungs, I'm a little worried about the whole situation.

Thursday, September 13, 2018

Gravity Problems

This is a term coined by Bill Burnett, a professor at Stanford University.  Gravity problems are problems without a solution.  This idea sort of resonated with me.  My life feels like one big gravity problem.  If there are no solutions, then staying stuck in the problem is of no use.

Makes sense.

The past few days have been facing our gravity problems.

I saw the Nephrologist on Wednesday.  I have Chronic Kidney Disease among other things.  My GFR or Glomerular Filtration Rate puts me in the early stages or Mild Kidney Insufficiency (Which I think sounds nicer than 'failure'.)  My left kidney is half the size of my right.  We thought it only had one good sized cyst but turns out there are multiple, blood filled cysts which accounts for the constant kidney pain I feel.  My doctor feels confident they aren't cancerous because there was no uptake with the contrast.  I don't feel as confident as he does.  He prefaced his remarks by telling me that cancerous lesions feed off of blood- and then tells me they are blood filled!    I don't know. 

The bottom line is, they can't fix any of this.  He said it's a slow progressing disease and the treatment can be worse than living with it.  I declined the medication.  I also declined the biopsy to rule out cancer 100%.  I may change my mind on this in the near future.  I didn't want to commit to anything until I have enough time to think about this.  This explains the pain, the blood in my urine for the past year and, that is my new normal.  Since my kidney filters are dying off, the blood, protein, etc.  is going to keep leaking through my kidneys.  How fun.  I haven't had a lot of time to think about my situation.  I have been preparing a bit for this kind of news so I wasn't completely shocked.

I had just enough time to get home after my appointment, pick up Shelbie and race to the Cardiologist.  That was a 4 hour appointment.  The whole point was for him to tell us that Shelbie's heart is not responsible for her declining lung function and that is exactly what he told us!  That is exactly what I knew he was going to tell us...

BUT...there's always a but, she has other heart problems.  She has some rhythm issues, moderate regurgitation of the tricuspid valve and a hole in her heart.  The hole in her heart is very small but, regardless, he is sending us to another sub specialist since she has already had two strokes.  In the meantime, she has to wear a 30 day monitor so we can determine what to do about her heart rhythm. 

While we were in the waiting room, we met a gentleman who has a pacemaker because a heart surgeon accidentally cut through the lower chamber of his heart's electrical system while replacing a valve.   His pacemaker is working at 99%.  I had no idea that a pacemaker could do the entire work of the heart's electrical system which made me feel much better about Sam's deteriorating heart muscle.   Weird...that that kind of information was helpful!  You take what you can.

See what I mean...gravity problems.  There is nothing we can do about any of this.  We just get to watch how the body slowly deteriorates.

Today, we headed back to Salt Lake for Sam.  Our Immunologist was so relieved to see Sam doing much better than he expected after the big scare Sam gave us three months ago when his counts crashed.  We don't have lab results yet but the plasma transfusions are helping him a lot from an infection stand point.  Going into winter, he wants Sam on daily antibiotics as well.  His goal is to keep Sam completely germ free this winter in order to let his immune system and bone marrow rest and rebuild after so many infections over the past few years.  He said in 2-4 more months, he would expect Sam to continue to improve.  I sure hope he's right.  Sam has deferred this semester of school again because he is so run down.  I have never seen Sam sleep as much as he does.  He works and when he can, he sleeps.  He still doesn't look that good to me, his eyes are sunken and dark on most days.

Spencer drove into Salt Lake and met us at the hospital.  It was so good to see him.  He is finally feeling better.  He ended up with a fever on his way home from Mexico and has been down up until yesterday.   We went out after our clinic appointments, for a late lunch to celebrate his birthday last week and he opened his presents in the parking lot.  We got to hear all about his adventures in Mexico and saw some of the footage he shot.  The guys from Deus taught him how to surf so that was fun for him; something he has always wanted to do.  They were so happy with his work, the producer has invited him to be the Director of Production on another surfing video next week in Monterrey, California.  He will be there for a week. 

I'm really so proud of him and all his hard work. 


Tuesday, September 11, 2018

Remembering

Never Forget.

It's a phrase I saw a lot today; it is 9/11.  17 years ago, the unthinkable happened and today, we still remember that day as vivid as we recalled our steps of yesterday.  We remember where we were, what we dropped, to tune in with the world.  We remember the horrifying images, the chilling sounds of grief across the airwaves.  We remember how we stood still in awe; struck with intense feelings, the fear invaded our homes.

This post is not about 9/11, but all day, I wondered why it is we are compelled to remember such moments...moments that happened so long ago, moments that set our world on a tilt?

Tomorrow was one of my 9/11 moments.  In fact, it was a moment that set off a chain of traumatic events for me and while the people in my corner, of my little world looked on, it likely meant nothing to them.  Not as much as it meant to me...still means to me. They probably can't remember what they were doing the morning of September 12, 2017.  They probably don't know where they stood that morning.  It was probably a morning like any other to them.  To me, it was something different.

So, I am remembering, in every cell of my body how I quaked and shook like a last Fall leaf clinging to a thin branch.  I remember watching the distress in his eyes, the single tear that fell to his flushed cheek.  I remember where I stood beside his bed...on the teal square, set into the vinyl floor.  I remember how small and tight the curtained room was.  I remember feeling my own heart skip a beat or two.  I remember the face of everyone who entered that holy space and how I prayed for each of them. I remember how I greeted the unseen angels I only hoped had shown up to guide the skilled hands that would touch my son.  I remember holding a kiss between my lips as I whispered 'I love you' because those were the only words I could find in that moment, as they wheeled him down the corridor to the suite where they would cobble his heart back together.

Tomorrow is Sam's 1st birthday with his new heart parts and pieces.   I will not forget, ever hearing that all too familiar beep after surgery.  The steady 60 bpm.  It was the sound of renewed hope and faith.  It was a comforting sound.





I don't know why I remember these sad moments.  I don't know why my body holds the memories as if it was happening all over again. 

Positive and negative things are processed in different parts of the brain.  Negative events and emotions involve more thinking.  They are never part of our plan, our happy ever after.  It takes a great deal of focus, thinking and pondering in order for the brain to make sense of negative things and put it into context.  Positive events are what we live for isn't it? So it requires far less work for the brain to process because it is expected...an entitlement program we should receive just for participating in life...right?

It's just human nature to remember the bad more than the good.  Maybe the remembering is our white flag we wave above our head, a surrender to what is, a token of surviving such a thing.  Maybe the remembering comes with a quiet voice that says we could do it again if we had to.  Maybe remembering holds the seeds of becoming, growing, withstanding.  Maybe all those memories, for good or for bad are embedded with holiness, sacred holy memories when Heaven stood, not far off and watched with you, the miracles that fell all around from above.

Sunday, September 9, 2018

Life is short...ride the long board

 


We have some big things happening this week.  I'm trying to stay in the moment and let things unfold as they will.  So, there is an abundance of anxious energy that needed a place to go and what better thing to do than long boarding!

It was a beautiful Indian Summer evening so we took off on a ride to the park.  Shelbie and my nephew and his girlfriend joined us.  They walked while Sam and I rode the long boards.  I know I'm not Sam's favorite person to ride with but he humors me.  I would go by myself but I don't feel as stupid if I'm riding with him.  As it is, people laugh and make all sorts of comments as they pass me. I love long boarding mostly because it's something I can do with Sam.  That's really the only reason I took up the sport two years ago.  Sam was going through some things and all his friends were gone on missions.  It broke my heart that he was alone most of time riding his long board.  It's become 'our thing' now.

This was Shelbie's first real activity since her surgery and she did great walking such a long distance.  Bentley loved the swing and Sam and I looped around the park a few times.  It was an evening of contentment and  reflection as we watched the sun drop behind the trees before riding home in the last fragments of light.  We are kind of a spectacle at the park.  Between the smiling dog loving life in the swing, or the old lady riding a long board and sometimes, when we go, the Hedgehog is in tow too.  We are some sort of special and far from normal.

                           



This is another Salt Lake week for us. In 8 months, I've worn out a brand new set of tires!! 8 months!! This week, the car will get new tires and a tune up to the tune of $1000.  Blah!  Both Shelbie and Sam have appointments and I see the Nephrologist for what I hope is the final word on my kidney situation.  

Yesterday, I started my own injections for my Ankylosing Spondylitis.  It has taken 5 months since my first visit to the Rheumatologist to get some relief.  Insurance companies are the worst!  I had actually decided earlier in the week that I didn't want to start the medication.  I don't love the potential side effects and maybe I could get relief in some other way than a hard core chemical I push through my veins, but then it showed up on the door step.  So, once a week I give myself shots either in my stomach or the top of my leg. (I have to alternate injection sites)  It hurts!  Holy smokes it hurts but so far, no reactions to speak of.  The last time I tried to start something for my AS about 8 years ago, I landed in the ER so I was pretty anxious last night.  This is a different drug than last time so hopefully, it will work.  I am hoping to see remission in 6 months or so and then I will go off it because I hate medications. 

Can't complain about today.  We exhausted many moments today. 


Saturday, September 8, 2018

Happy Birthday Spencer

I'm pretty happy to celebrating Spencer's birthday today...for many reasons but mostly because he's still here!  There have been a handful of moments that I just wasn't sure he was going to make it...but he has!  And he's back in Utah after nearly a month in Mexico.

24 years today.  I've spent so much of the day thinking about the last 24 years.  It's so hard to believe that I have children this old!  I know, everyone says that but I seriously don't think it's possible.  I have never quite felt like a 'mom', more a friend than anything or at least a fellow traveler in this world, just trying to figure things out like they are.  We have definitely raised each other. 

Although, I will say this, Spencer may be the reason I have so much grey hair or at least he has been an active contributor to the hair and wrinkles situation I am currently facing.  Even still, he is the love of my life, the family Disco Ball.  He lights up a room with his good humor and steady kindness.  Shelbie and I are so lucky to have Spencer and Sam in our life. Spencer has been the 'man' of the house for the last 15 years. 

So, here's where I get to post my favorite (Never Before Seen) pictures of this deserving young man...

Spencer's First Birthday

Me and Spencer at the Zoo...2005

Spencer's first snow board competition 2006
2009 Spencer and his friend built this demolition derby car and his dad drove it for them in the competition. That's Spencer in the middle of the front seat!
2009 I think was Spencer's mid life crisis!  I wasn't sure we would survive the teenage years.  He and his friends decided to give each other matching haircuts.  When he walked in the door for dinner, I was speechless!  He begged me to take him to Walmart after dinner so he could walk around and show off his new look.  That was all fun and games until every old guy in the store complimented him, then he was filled with regret!  Somehow, in their little misguided teenage mind, where the frontal lobe was on pause, they thought this style would be a 'chick magnet'.  Hmmm.

Spence has been blessed with some pretty amazing opportunities.  His Make a Wish was a highlight.  He, Sam and his Uncle Howard made it to the big screen in Times Square.

Skating at Rockefeller plaza
 He was healthy enough to serve a Full Time Mission to Colorado.  If you ask Spencer, even today, that was the best 2 years and he would give anything to still be there, serving the Lord.
Sam and I on the eve of his mission departure

 Spencer's life has been anything but smooth sailing.  The first time Spencer died and was brought back to life, they saddled him with this monitor for 6 weeks or so and he took it with good humor as he most always does.


Some of this year's pictures of a well- adjusted, happy, fearless young man!

June 2018

4th of July 2018

July 2018- Bonneville Salt Flats

Clarion Alley- San Francisco 2018
 Spencer has truly become a great young man.  He fears nothing, including dying.  He refuses to wait around for life; he drags it along behind him, disease and all.  I am continually in awe of what he accomplishes.  He has dedicated his life to learning, growing, becoming and loving and taking care of his family and friends. 

Wednesday, September 5, 2018

Becoming something you're not



After watching Shelbie endure a string of seizures, a long, sleepless night; the alarm goes off anyways, even before the Sun, is ready to rise and shine.  Note to self...find a quieter alarm clock!  It's piercing noise, rattles me and reminds me that another exhausting day is about to start.  I leave my sleepy thoughts on the pillow and shake off the dreary, like dust that settles on things that stand still.  The kind of dust perfect for fingering in my name...a signature laying claim to my own consolation prize life has offered up. 

I stumble to the bathroom, hot water warms up the shower, my reflection and wrinkles of time fade in the steamy mirror and I have one thought.

We are becoming something we're not.

Resilient.

Productive.

Hopeful.

Accepting.

Maybe not every day, but for one day at least. 

Would it be so wrong to live one congruent day? One day or two, to cry foul on the fairness of life? To let grief have its day?  Would the world fall off its axis if for one day, you acted the way you felt inside...let the world finally meet your inner Eeyore? It seems impossible that we could rise above the anchors of disease and make something of the day. 

But we do...we try at least.  It's not always a graceful attempt but it's an attempt. It's perfectly flawed with emotions that get in the way, all the feels I wish didn't squelch my perfect sense of denial.  I watch my kids do it better than me in many ways. 

Shelbie gets up everyday and works a fair amount. Her humor is coming back, her desire to create and become is alive.  Even Winston is back on track for his little book of Alphabet pictures. 

Spencer has created this life for himself in spite of his disease.  He barely survived high school, had to drop out of college during finals week because he spent that time in a hospital but has carved out a way, when there seemed no way at all. 

Sam is a work in progress but he stays in the wrestle.  He faces tough choices at an age when most young men have a myriad of options and never consider their health.  Sam does too but it will require a little digging to find that thing...but he'll get there.  He is far from throwing in the towel.  This afternoon, he even went to work at the trampoline park with his plasma transfusion going.  He wore the pump on his back and two needles going into his stomach.  He called me when it was through and I stopped by to collect the medical stuff, bandage him up and he finished his shift, then went to his second job.                                  

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One of Shelbie's recent newborn photos.  They take my breath away, every single perfect little spirit she captures. 
                                      

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Spencer is honing the art of landscape photography and video.  His eye for beauty and words amazes me.  He is a Director of Production and with that comes the responsibility of writing script and his writing is so introspective.  He develops these talents in the most unassertive way.



And then there's Sam and the fearless way he moves his body,with half a heart but a full soul and zest for living.  He truly exhausts the little moments. 


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And, I can't forget Winston...our pet Hedgehog destined for greatness.  He sits in a bowl that Sam made and this picture that Shelbie took, reminds me to accept whatever fills our bowl for the day no matter how prickly it may appear.
That's where we stand, at least for a moment.  It has still been a trainwreck of a week so far but I am glad we aren't becoming all the things we could be...are... at times.  We are becoming something else.  Something we're not yet, but will be.                                       

Tuesday, September 4, 2018

My heart

I haven't talked about Spencer in a while.  That would be because I haven't spoken to him in awhile...except I finally got a brief text from him tonight and they are in Scorpion Bay and yes, the name says it all.  My dear mamma heart has been hanging in there for three weeks with very little contact.  We are use to talking every day!  Oh, well, we are on the home stretch. 

He has been in Mexico for three weeks already and won't be home until Sunday!  He is filming an action movie for Deus surf boards and dirt bikes.  They have driven from LA down to the very Southern end of Baja, Mexico and stopped in every little run down town along the way.  I'm not exactly sure what the accommodations have been but I'm guessing he will fill me in on the details when I see him next.  His birthday is this week but we'll probably celebrate next week when we are back at the hospital...That's how we roll. 

It's been a bit of a disturbing weekend.  Friday night, I got the quarterly report on Sam's pacemaker.   He is monitored 24/7 and they report any abnormal findings.  When he received his pacemaker one year ago this month, it was pacing his heart between 40 and 50% of the time.  The past three months, he is pacing at 68% of the time.  With every 100 beats of his heart, 68 are being initiated by an electrical shock!  Ugh.  That's an unexpected drop in heart function in just a year.  I'm not sure what to think of that but I will definitely be asking about it next week when we see the cardiologist. 

Shelbie was doing okay but now she's not.  I have no clue what is going on...maybe seizures, low blood pressure, I'm just not sure.  Oddly enough, our Neuroimmunologist emailed me out of the blue today.  She was thinking about Shelbie and wanted to see how things were going. I haven't even responded, that will be an email that is going to take more than a couple of minutes. 

That's been the weekend pretty much. 

On Sunday our dear friends, the Hendricks' invited us to their son's cabin in Island Park.  We love it when they invite us to spend the day with them.  It is so peaceful eating dinner beside the lake and enjoying our favorite people.  

We met them 5 years ago at a hospital.  Shelbie was in cardic rehab and so was Neal.  I don't even know how we got to talking but we clicked and we have been friends ever since.  They only live 10 minutes from us.  They are, hands down, the kindest, sweetest people I have known.  They have taken us into their family and treated us like their own.  My kids have adopted them as their grandparents here.  We go for lunch together or take long drives into the mountains.  We can often be found in their backyard during the weeknights after work, sitting under the apple trees until the sun begins to set...and the Bats come out to play!!  I'm the laughing stock now, because I am terrified of bats and they have so many bats in their backyard!  As soon as it starts getting dark, they flit and fly all over and I basically army crawl to my car, screaming inside, and dying just a little! 

Anyways... it was such a welcome distraction on Sunday night to spend time with them, and some of their children and grandchildren.  

                                                    

Beautiful Henry's Lake
   We salvaged the weekend for the most part.  I'm trying not to worry about the condition of Sam's heart and Shelbie's seizures today.  It's pretty late and I wish I was in bed...asleep but I promised I wouldn't go to bed until she was asleep.  When she has a string of seizures, it can feel like she's having a stroke and that's pretty scary for her.   Here's hoping things are better tomorrow.                                             

Saturday, September 1, 2018

Friday

It's been a big day in the work world.  I did some final preparations on a house I designed and today was move in day.  We started the design process about 9 months ago and everything I imagined on paper, came to life.  Better than that, is seeing my clients excited and happy with their new home. 

It's pretty amazing to start with a blank slate, design the space, draw 3D studies of the exterior, select the finishes and watch it all come together.






Lots of trim in this house.  The floor is my favorite- White Oak with a custom stain color. 



Kitchen, Nook, and Homework room (behind the glass barn doors)
There are still a few more upper cabinet doors with bubble glass, to be installed







Great Room. 


Cabinets in the homework nook.  I love designing cabinets.  Every home needs a 'Command Central'  

Powder Bath

Downstairs fireplace.  Today was a flurry of activity as cabinet installation was completed. These floating shelves are amazing. 

The Jack and Jill bath. Marble hexagon tile, grey cabinets

Marble herringbone accent tile is so beautiful.
 This took up half of my day.  The other half was spent babysitting, occupational therapy, installing shelves in my closet and working my day job.  And now it's almost 1 A.M on Saturday and the day is finally over!  Whew!  It started at 5:15 Friday morning. 

Fluidotherapy machine at Occupational therapy.  This is filled with ground up corn cob and heated to 150 degrees.  It is suppose to desensitize my raw nerves.  The air blows the finely ground corn cob all around while you grasp at it.  It is surprisingly helpful. 
    This peg board was impossible for me.  I still don't have my fine motor skills back yet and I have a weird tremor when I use my fingers for stuff like this, or playing the piano.  It was so hard and took so long to put all these little pegs in the holes with my hand. My therapist thinks I'm doing great but I feel a bit discouraged.                                             


Life comes at you fast sometimes. 

Thursday, August 30, 2018

The Hard Truth

I've been putting off the hard truth for months now!  I have skirted around it, tip-toed through it, jumped over it...anything to avoid it and pretend it didn't exist.  It was working beautifully until I saw one knot in my snarl of avoidance, break free, and it all started to unravel which ultimately ended in a mess.

A few months ago, or maybe it was just weeks, Sam approached me with the grandest of plans to move to Arizona.  I entertained his dream, actually contributed some ideas and listened with intent.  I was half interested but thought it was mostly just...well, a dream.  He brought it up often until one day a couple of weeks ago, he actually produced concrete plans!  He was moving in Mid-December and his management position at a new trampoline park would start in January. 

Huh? Is he serious?

Ohhhh, he is serious!  How did I miss that?  It wasn't a dream anymore, it was happening and I tried for days to wrap my head around that and figure out the logistics of him moving away.  I came to the conclusion that he really can't move away because of insurance and his health right now.  I did not want to be the one to break it to him.  This would be a fabulous time to be married so his dad could be the bad guy, but I knew it was all up to me.  Still, I danced around the idea whenever he brought it up.  Tuesday night he said, "Mom, we haven't really talked about this move to Arizona, I need to let my new boss know when I'll be there."

"Yeah, so we do need to talk about that.  I think there may be some things we need to work out."

That set him off and into a tailspin.  We had to have the hard talk about why he can't move to Arizona.  I quickly blamed Obama for it of course.  Health insurance is networked to death, there would be no way we could make that work.  He kept telling me he would fly to Utah anytime he needed to see a doctor.  It's hard for him to remember or realize how often we go to the doctor because of his issues with Dyscalculia and processing.  The thought of setting him up with an entirely new team of doctors in a far away State is unthinkable for me.  We just barely got our current team to a place of trust with each other. 

Truth is rarely easy.  The word itself is pointed, with hard edges. Truth just doesn't roll off your tongue.  It hurts to put it out there.

The truth is, he is grasping at life right now.  He feels like he's running out of time.  He is desperate to find his 'thing'; that passionate thing that gives him a reason to get up every day. College is hard for him and not working out at all and that creates even more tension.  And then of course, there's this girl!  Sam loves this girl and she kind of likes him.  She is moving to Mesa in December and worse than dying from Dyskeratosis, is losing the girl he loves.  So, Sam's all a mess this week.

Anyways, I ended up talking to him last night, with his girlfriend present, about all the reasons Arizona isn't going to happen in December.  At first he took it really hard and he fought the tears for a good 20 minutes, but then after running down a long list of all the things I admired and loved about him; his strengths, his gifts and talents, he began to see possibilities for his life here, or even in Utah.  He began to see a way to navigate his chronic health conditions and still live an endearing life of happiness and passion.  He began to see the ways he might start setting and achieving new goals. 

He also had plenty of time to yell and scream and vent and get mad and let all of his hurt and worry spill out of his head, where he often keeps it all buckled down, out of the way.  I love these moments.  I love when my kids feel so safe and validated that they allow me to witness this deep and moving pain.  It's my favorite part of motherhood by far!  The wrestle.  Amazing things happen when someone feels witnessed, loved and safe. Let's not forget how it tears at my heartstrings too. I hate that we always have to make concessions for this awful disease.

Truth is hard and demanding, but its also clarifying and restorative.  Today, he's been a new kid.  I might even use the word happy.  Today, he's been a happy kid...we are going to find a new way to lean into happiness.

Wednesday, August 29, 2018

Almost Comical

Imaging and me is always a joke.  Today was my CT Scan.  I had it done in a different city because I don't trust the Radiologists here.  I think they just keep spitting out xerox copies of past reports on my kidney scans because they read word for word, year after year.  This has been going on long enough, I wanted some fresh eyes on my kidneys.

When I arrived, they asked if I had finished my contrast...but no one told me I was suppose to drink contrast so of course that is what I reported.  The nurse said, "Oh good, we didn't want you to drink it anyways.  We are going to change things up from the way your doctor wrote the orders."

Hmmm...sounds fishy but instead of questioning her, I changed into my one size fits all, mismatched set of hospital scrubs they provided me.  I'm pretty sure the one size fits all came from the Men's, Big and Tall department.  Just for fun, I put the pants on upside down...the ankle of the scrubs, fit around my waist perfectly!!  Ha ha...of course I didn't leave the changing room like that but they were unbelievably large!!  The scrub top was just as big, so I lumbered out of the room feeling like a little school girl playing dress up, which I can't complain...It beats the pink super hero capes they give you for the yearly mammogram stuff.

So, the nurse saved me a spot on the bed of the CT scanner and invited me to lay down.  I asked how we were going to change things up and she said they were doing a more intense IV contrast that would light up my bladder as well as kidney and renal arteries.  She asked why it has taken me more than a year to get another scan and why they haven't sorted things out yet...Fabulous question!  I was hoping she would ask me that.

The short answer is...doctors are becoming lazy.  I have had two doctors and two Nephrologist in 12 months.  They all gave me the same basic answer or variation of, "You're too young for kidney problems, let's just watch it."  Meanwhile, 13 months later, I'm still losing blood and my hemoglobin and red cell count is the lowest it's ever been.  Hopefully, this new Nephrologist has his head in the game.  I had to fire one Nephrologist because he thought I was 65 years old!! He actually said, "Well, this is to be expected with someone your age."  To which I responded, "MY age?!! I'm 49 years old!  How old do you think I am?"  Just kidding, that's not why I fired him.

Funny thing though, as this radiology tech was putting in the IV and getting things going, in a bit of a whisper she said, completely out of the blue, "I think you look good with this color of hair."
I said 'Thanks' but my inside voice was saying something else... Did I start a debate unknowingly about my hair color?  Did I seem insecure about having grey hair?  Did I ask anyone's opinion about my hair?  Most people would say, "I like your hair color."  It was funny, I may have laughed out loud because she sounded so sorrowful that my hair is the color it is!  Poor Me.

Contrast is an interesting beast...There's nothing quite like feeling as though you are burning from the inside out and peeing your pants at the same time.  It's an awesome experience you don't get everyday!  It's something I'll treasure for days to come.

So, that's that.  Now I wait for the verdict in two weeks, unless of course we are going to watch me bleed out for another year.

Because that ordeal wasn't funny enough, I got the last of Shelbie's scans and tests from last week, post surgery.  Never have I ever seen a Radiologist ask a question on the bottom of his notes.  They often say things like, Please correlate these results with further testing or past tests or something like that.  I consider it more of an excuse to not be responsible if something gets missed than anything pertinent.  These last scans and tests are nearly duplicate images from all the testing over the past year and multiple scans in the past 3 months.   This time, at the end of his report, numbering all the nodules, tumors, lymph nodes etc. He flat out says, "Are you sure this patient does not have lymphoproliferative disorder?"

Lymphoproliferative disorder is cancer!  When lymphocytes infiltrate the organs and in Shelbie's case, the lungs.  What a joke.  I understand that this is complicated but I wonder how often they consider what it feels like to be the patient living with this.  It's extremely difficult to spend a week where everyone you meet is trying to stage your 'cancer' or asking you what stage you are in, after they see the images...and then to be told, you don't actually have cancer! It messes with your head in unbelievable ways.  Now a week later, we are back to yet another doctor, a cancer specializing radiologist, who is questioning our entire team!

I can't even.  It's ridiculous.  I don't even know what to do with this.  I think nothing.  I think we will do nothing for now.  We actually laughed about it this afternoon, in a sarcastic, overwhelmed sort of way but it felt good...to laugh, I mean. 

An unexpected, almost comical day today. 

Tuesday, August 28, 2018

The necessary lies

The day ebbed and flowed about like any other day.  In fact, it almost felt normal, relatively speaking.  I'm fairly certain there isn't such a thing as normal but it's a convenient word to use anyways.  The morning was a bit rocky but it smoothed out into something tolerable. 

There were the usual amounts of work, emails, clients to visit.  I reacquainted myself with the grocery store.  It feels like forever since the pantry and fridge had anything resembling real food sitting on their shelves.  I stopped in at the pharmacy for our monthly refills, exchanged friendly salutations with the Pharmacist.  Ran in to plenty of acquaintances and gave a cheerful account of "We're doing great!"  From the distance I kept,  it seemed like we were settling nicely back into the rhythm of living and breathing.  

The uneventful day gave in to the sinking sun and after work, I found myself back in the gym after a 3 month hiatus to fix my ailing wrist. 

I found a comfortable speed on the treadmill and little by little, I felt myself unfold from the previous week of tension and anxiety.  I almost remembered how to breathe again, after holding my breath for so long, waiting for what comes next.  I got lost in whatever sound filled my earbuds and put on the miles and nothing dared to cross my mind and if it tried, I ran faster and farther.  

I thought about all the lies I told today.  Things I promised my kids I would do but never did. The lies I told to the people I ran into...  "We're good."  "Things are great!"  "The kids are awesome!"  "Ya, it's been a tough week but honestly, where would we be without our trials right?"   It took absolutely no effort at all to lie.  Even the smile I faked all day was easy.

Of all the lies I told today, there was one that was completely necessary.  It was the lie I keep telling myself.  This is just a medical mistake.  A bad dream. Sometimes, I just get tired of hearing the truth over and over and I want to believe in a different story.  Live a different story.  Be a different story...so I find myself making it up as I go, setting aside the truth for something else, for now...

  

Sunday, August 26, 2018

Adrenaline Drain

I'm feeling the effects of adrenaline drain.   It always come after a stressful week.

Shelbie's been stable and even improving from a physical point of view.  Mentally, she's not in a good place.  I walk a fine line between trying to plan enough in a day to keep her mind occupied and letting her feel the fear.   I know that sounds weird but I'm learning that we have spent way too much time trying to run and hide from our truths.  Sometimes, we need to sit and stew.  It's when we sit and stew in the uncomfortable feelings that we realize what we are made of.  I want her to find her strength again, on her own.  So, this week, I will stand by and cheer her own as she tries to wrap her mind around the situation she faces. 

Things did get pretty rough earlier this evening so I made her go for a drive with me.  It helps if she can get everything out of her head...everything!!  We wandered around the country roads, talking, watching the early sunset and ran into some albino buffalo and elk. 

Upon returning home, we had to start plasma transfusions for Sam and Shelbie.  Over the past 6 weeks, since Sam had to start this treatment, we haven't been able to co-ordinate the schedule enough to do it at the same time but tonight the stars aligned.  It hit me that this is a forever thing for these kids.  Every week, they will have to infuse fresh new plasma in order to survive. 


It's odd to me how things that we have known for some time, all of a sudden seem brand new and overwhelming all over again.  Tonight was just one of those nights.  It seemed extra hard to keep each dose straight and not get them mixed up.  I'm trying to get them to take a more active role in this because I won't be around forever and I need them to know how to do this, but they aren't interested.  It is kind of tough to place two needles through your own stomach.

Not much to report today.  This week, we have a break from Salt Lake but not from hospitals.  I'll be in Physical Therapy nearly every day, meeting with my hand surgeon again, hoping to avoid another surgery and getting the long awaited CT scan on my crippled kidney. 

Saturday, August 25, 2018

The Praying Mantis

Today began way too early for me.  I was at work by 7 this morning after a long 4 hours of sleeping.  I was done at 11 AM and hurried home to get some chores caught up and start my afternoon of designing.

Okay, no judging, but I haven't mowed the back yard in over 6 weeks, maybe more.  I haven't watered it either, or weeded.  It was a wreck of a yard.  So, I tackled that first.  I loaded up the car with all the junk that has collected back there over the summer, bags of weeds, all that stuff, so I could run it to the dump.  As I was cramming in the last of the broken window screen, an enormous Praying Mantis flew on my arm and he was golden yellow in color.

Keep in mind, I have one nerve left after this week and it's debatable if I even have that!  So, I panicked, like any person with one nerve left would do.  I don't like things that fly around.  I was screaming, running in circles and basically scaring the neighbor children.  Shelbie heard me from inside the house and opened the garage door to see my arms flailing about.  Of course she couldn't see the Praying Mantis I couldn't get off my arm so it was not an impressive sight.

Image result for yellow praying mantis

I was able to compose myself...the whole ordeal went down in just a few seconds but it seemed like a lifetime really!   Shelbie scolded me for freaking out..."Don't you know that a Praying Mantis is good luck?  He's not going to hurt you!"  She picked it up off the garage floor and held it on her hand.  He was quite content to sit there.

Apparently, the little creatures are in fact, good luck.  Spiritual luck.

"Accordingly, the praying mantis symbol chooses to present itself to individuals when they have allowed their busy schedules to overrun their intuition, silencing their internal voice and throwing their equilibrium out of balance. The praying mantis always comes to us when we are internally craving peace, quiet, and calm in our lives.
The praying mantis meaning has a variety of traits: temperance, quietness, awareness, calmness, clairvoyance, patience, mindfulness and innovation. These insects are well known for their pre-strike pose, which is a popular symbol of balance and patience in and of itself.
If a praying mantis strikes too soon, its prey gets away. Because of this, it has evolved to be patient: so patient, in fact, that it will not budge unless it is 100% positive that it is the correct thing to do. This acts as a direct message to us, reminding us to contemplate our movements just as carefully and precisely.
When our timing is off, we may generate an unnecessary (and unpleasant) struggle or blow an opportunity entirely. Through stillness, awareness, and balance, we can hear and recognize the perfect moment. We must listen to the voice that speaks to us with openness, not fear. If we have patience and wait before striking, the right moment will come, and we will succeed."
This is only the second time in my life I have seen a Praying Mantis.  The first time was almost a year ago, on the eve of Sam's heart surgery; he sat outside our hotel room door. 
Long story longer...we took that as a sign to change our afternoon plans of work and find a way to balance ourselves again.
We took off to the mountains; our happy place.  It was the perfect way to end the week. 


Our traditional rock stacking- Palisades Lake

It was perfect weather today.  The smoke from all the fires hung low in the trees, but it didn't detract from the beauty. 

Why work when you can lay around looking at this all afternoon?

I found Shelbie's smile!

This view!!
It was exactly what we needed today.  We got home a little while ago and it was nice to have my house back in order, the backyard looking decent again and hopefully, our little Praying Mantis friend sticks around.  We could use more days like this. 

Out to the porch

Today was an impossibly long and difficult day! It was move in day for Sam.  He got out the door way before I was ready because he wante...