Tuesday, October 31, 2017

Halloween and Hearts

Happy Halloween and you know what that means...we were stuck in a hospital.  More years than not, Halloween has been spent in the hospital and this year was no exception.

Let's take a minute to remember last year...Last year Shelbie was in the hospital following a significant stroke.  She was in Huntsman's Cancer Hospital for 10 days.  Needless to say, Sam was at home holding down the fort and when the night of Halloween came, he left this note, stapled to a moldy pumpkin on the front step.  I didn't find it until several days into November.


I love that he wrote it on hospital stationary too!  I still laugh about that.  This year, I was prepared!  But...no one was home to hand out candy.  I was in Salt Lake at the hospital and the other two were working. 

Monday night, we had the cousins over for pumpkin carving.  I am still wickedly sick so I didn't participate but I did manage a picture.  These kids love hanging out.  They all look so happy and for the evening they were! 

India, Chase, Taylor, Kayli, Yoletzi, Connor, Michelle, Sam and Shelbie
Because of that and trying to keep normal things in our difficult lives, I didn't leave for Utah until early this morning.  I was up at 3:15 am after a lovely 2 hour nap.  

The thing about the early morning hours, you get to witness the sun rising.  It's so dark when the moon has set, just before dawn.  Even the stars seem dull but then slowly, the sky fills with the brightest colors that give way to drenching light and that is only something you can witness for yourself. 


I didn't sleep well because it's so hard to sleep.  Bad things seem to happen in the night and I'm a little traumatized I think from getting the phone call from Spencer a week ago. Not only that, there was a shooting at the University of Utah and the entire campus and hospital were on lock down as the shooter was at large.  I tracked the story as I drove and even this morning things were sketchy if we would be seen today.

There are always lots of police at the hospital so it didn't seem out of the ordinary this morning when we got there.  Every time we are there, something crazy goes down.  Last Tuesday, when Spencer passed out after surgery and I fled the room, I ran down 8 flights of stairs and hid in my favorite bathroom stall where I seem to go when I am breaking down.  When I was pulling myself together, two women came in and started a fist fight. They were screaming and yelling and shouting the vilest words at each other.  You could hear bodies hitting the stalls and feel them shake.  One of the ladies had a walker and she was throwing that around like a heavyweight wrestler.  The place terrifies me half the time. The only redeeming thing about the hospital are the volunteers that play the grand piano during the day.

Anyways...we didn't get shot today so there's that...I mean, it's a good day when you don't get shot.

Spencer is a star around the cardiovascular center.  I seriously can't handle hearing one more person tell him how impressed they are to see him walking around.  I think just about everyone in the department has seen the Loop Recorder data when his heart stopped.  Surely they've seen people die everyday from cardiac arrest and come back so I'm not completely sure what makes Spencer any different or special to get all this attention.  Just to be clear, I haven't asked for the full report so I'm in the dark as to what they really saw and how really serious this was.  And then when they realize it's me there again after just doing this with Sam...things get crazy.

Today, nurse Polly said, "Wow! You have your hands full with these kids." Then she turned to Spencer, "Are you giving your mom trouble?"

"Well, ya, she does have her hands full.  No lazy days for this girl!" was his response and then we all laughed nervously because I was so close to tears all the day long.

Spencer is having a lot of tachycardia now- his heart rate is going too fast!  That kind of explains the dizziness and feeling like he is going to pass out.  They made some adjustments to the pacemaker settings and they want him to record every dizzy spell with the internal loop recorder so they can monitor him closely this next week and try to figure out what is happening.

Just like Sam, he is having a really hard time adjusting to the new pace, especially at night.  He was having over 1200 episodes of heart rates in the 30's when he would sleep prior to surgery.  Now his heart rate is double so his body thinks he should be up and going.  I could tell today he is very restless!!  and maybe a little anxious too.  His pacemaker is literally keeping him alive at night.  That is when it does the most work for him.  His heart gets so dangerously low at night.  It is working about 25% of the time to keep a good pace during the day.

I couldn't believe how bad his rash is from the betadine they used during surgery.  Hives over hives.  Again, the nurse couldn't believe how bad it was.  She even asked to take pictures so she could show the doctor.  He has some steroid creams now and they took out the stitches and bandages so now he just has to deal with Steristrips for 4 more weeks.

When we were through, I took him for a late lunch and kissed him goodbye.  He was sick after lunch and I had a fever again so we didn't waste much time.  Thankfully, his roommate drove him which saved me an extra two hours of driving time.

All in all, we are managing but not well.  I'm trying to be patient with the process of falling apart so we can put ourselves back together again someday soon.
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Sunday, October 29, 2017

The Thing About Trials


The thing about trials is that they are trying.  And surprisingly enough, each trial is harder than the one before...as opposed to easier.  I guess if they were easier they wouldn't be called trials, they would be nothing more than a nuisance.

So, whatever is coming next worries me because for the first time, I can sit here and say, that God finally found the right combination of problems to crack my tough shell and leave me feeling broken down and done. I usually bounce right back and find our groove again but it's becoming more and more difficult to do that.  I guess it is in the impossible where you discover what you're made of. (I'm still trying to discover that...)

This weekend I have been sick.  It started on Thursday night and Friday but I have had to spend those two days in Pocatello painting and finishing up the Orthodontist office for them to move in on Tuesday.  Saturday, was more work and putting the house back together after being gone for the week but by that evening, I couldn't pretend anymore that I didn't have a fever and body aches that made me wish for a swift death!  But...here are some pictures of that project...It's coming together...
The coolest brick wall I whitewashed, sanded and then stenciled on the logo.

The old antique doors finally in place.  I love how they turned out.  Sadly, the construction company didn't leave me anytime to paint the crown molding so I had to paint the crown molding while standing on the top of an 18' ladder with them swaying back and forth! 

The furniture has arrived and is ready to uncrate.




I'll post finished pictures when we get all the artwork hung, and everything in place.

In the messiness of the week, I have been trying to cobble my kids back together.  The problem with all three having the same disease is that they watch each other suffer and worry when they are next.  The reality that they can't live forever in their failing bodies becomes very sobering.  Sam's been the hardest to figure out.

He brought some friends over Friday night to watch a movie but Shelbie was already having a girl's night and they had claimed the only TV we have.  I didn't want to see disappointment on his face one more time, so I nailed a gigantic sheet to the living room wall, moved the furniture out and set up Shelbie's projector so they could watch their scary movie.  I popped popcorn, broke out the candy and Doritos and I was pretty much mother of the year in that moment for 8 starving college students.  As I was pounding nails into the wall, I heard one of them say, "There's no way my mom would put nails in the wall so I could watch a movie."   What they don't realize is that when you deal with life and death every single day, a nail hole or two is really nothing and for the amount of happy it brought...was well worth it.

Saturday night, I made a few dozen crepes and served up a crepe bar followed by games and movies to the same group that was here Friday. They are new friends for Sam and they are all so nice and friendly and for the first time all week, Sam seemed happy and relaxed.  I crashed in bed to the sounds of my kids being normal and happy. At nearly 2 am, Sam came into my room and woke me up.  "Hey mom, thanks for all you have done for me this weekend.  I had a really good time and my friend's love being here.  Thank you.  You didn't have to go to so much trouble." That made the extra effort with a fever so worth it.

Today, I decided I didn't want to be the tough girl anymore and honestly, there was no way I could be.  I'm so sick! I have stayed in bed all day except when my Nephews and their girlfriends came over for homework help.  That led to making dinner for them all and then dessert and then more college kids for games.

As for Spencer, he is a trooper doing this alone.  He has spent the weekend mostly in bed.  He was invited out for dinner with his roommate and his fiance.  He also made it to church.  He has a ferocious rash still that has turned into blisters and burns from the antiseptic they used during surgery to clean his skin.  It covers his chest, neck and under his arms.  I talk to him a few times a day.  He is dizzy most of the time and overheating.  Sam experienced some of this but for Spencer it has been relentless. I'm not sure if there is a pacing problem or something else.  They want to see him Tuesday and see if they can figure out what is happening with these new symptoms and treat the wound and burns.

I will leave either Monday night, late, after my night jobs or Tuesday morning at 4 so I can get all the way to Provo to pick him up and back up to Salt Lake in time for our appointment.  Whew.  I really hope I'm feeling better in the morning. Life is all about just making it through the current hour.  More on that next...

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Thursday, October 26, 2017

Recovery

Spencer is slowly improving.  It was the hardest thing in the world to leave him at his apartment and come home last night.  The HARDEST THING!   I filled up their fridge and pantry with easy to prepare foods he could make with one arm.  Got his meds organized, took out their garbage and tried to find a million other things to do so I wouldn't have to say goodbye but I did say goodbye and cried all the way home. 

A lot of people have asked me if the second time was easier.  No.  It was not.  Different kid, different circumstances. I've learned even more about pacemakers this time around.  Spencer's was so unexpected really and he is already in more dire circumstances health wise than Sam.  I know his heart has been struggling but I never thought it would ever stop after the episode last year.  I really thought that was just a fluke thing.

This was harder because I had to hear him relive that moment in the early morning hours of Saturday in a remote area of Zion's National Park.  When our doctor came in to pre-op and asked Spencer to replay the events, he was actually grimacing and gritting his teeth as the details unfolded.  That was also the first time I had heard him tell of the events.  I hadn't asked up to that point.  It took everything I had not to throw up.

Yesterday, when the head of Boston Scientific came in to check his pacemaker and be sure the wires were still in place, he said Spencer's 'pause' was the most impressive he had heard.  I found out in the cardiac department, they don't like to use the words death, die, flatlined, stopped...they prefer the word pause.  It kind of bugged me for some reason.  Except at one point, after our Cardiologist had used the word 'pause' a few times, he finally said, "Can we just say flatlined?  That's what happened.  You flatlined."

Spencer's first night in the hospital, his heart had more issues.  The Boston Scientific guy downloaded that first night's information and he said, "Wow, you really needed this!  I guess it's to be expected after what you've been through."  I didn't even ask what he meant but it didn't sound good.

Today, Spencer had to show up for a job interview and part of that interview was doing a trial video for them and have it edited by tomorrow morning.  His friend drove him and Spencer used his shoulder harness to mount his camera to.  Spencer has a really bad tremor so he has to have special gear that keeps the camera steady even though his hands aren't.  Those cages and gears are heavy and bulky but work really well.  So, for a couple of hours, he had that resting on his good side and did the best he could to film one handed.  One of the interview questions was if he would be dedicated to the job...really?  A kid shows up the day after heart surgery, films one handed and they have to wonder about his dedication? No one can say my kid is a quitter.

He's in pretty rough shape tonight just because he overdid it so much.  Let's hope he gets this job!  He is having an allergic reaction to the betadine that they used during surgery that was left on his skin under the dressing and all around.  Hopefully he can get that under control and rest well tonight and through the weekend.

Here at home, it's been damage control.  Sam especially is having a rough time.  He is so angry at everything.  The kids are so tired of all the struggle and plans always changing.  I took him out for lunch to try to get him to talk and process things and then we went up to the hospital to visit my friend.  On our way, the University called him and wanted to know why he couldn't get decent grades because I guess he's on academic warning.  Do they really call all the kids who get bad grades and ask why?  I was trying so hard to let Sam just handle it.  He finally told him about his learning disabilities and health problems so now, I get to go to a meeting with some academic people to defend my son's intelligence...or something. We are suppose to prove he has issues.  *Insert eye rolling*   I'm just over this.  I wish he could find his 'thing' like the other two have and we bag school altogether.   I'm done with higher learning.  We've forgotten how to value anything else in this country but grades.  Grades seems so ridiculous to be thinking about at a time like this.

So, all of that pushed Sam over the proverbial edge and now I have one angry, heartbroken kid on my hands. An angry Sam means a reckless Sam.  I imagine he's taking out his frustrations at the gym and I don't even want to know what he's been doing to push the limits of his body.

Tonight, I took Shelbie in to the city so she could do some shopping.  It was good for her to get out and she's doing better than Sam or Spencer, at least emotionally.

It's going to take awhile before we really get back to normal but we'll get there I'm sure.

On the drive home last night, I realized that the kids are past due for their bone marrow biopsies.  In light of things, I'm going to check with our Oncologist and see if we can wait on that til Spring.  Spencer's next surgery will be here in just 6 weeks and Shelbie's PET scan to follow her brain tumor is coming up.  I think the kids have done enough for one year.  I'd hate for 2018 to bore us to death.

I'm feeling the urge to silver line this week.  My awesome neighbors were in Salt Lake on Tuesday and came up to visit Spencer in the hospital.   Some other friends who live in the area also came up to the hospital. Our dear friends from Colorado had her daughter bring over a ton of food tonight from Panda Express.  It was so lovely not cooking and not worrying about what to make.  I have had many people reach out to offer prayers and anything else we may need and that is so kind.  I know it's not easy to approach us all the time, especially when it's hard to find the right words to say.  Each text message or otherwise has been so nice. Thank you so much!   

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Tuesday, October 24, 2017

Pacemaker Round 2

It's been a whirlwind of drama around here.  On Monday, I spent the morning trying to get in touch with our Cardiology team.  I started with a call to the nurse who works for both Sam's doc and Spencer's doc.  I explained to her what happened on Saturday and she said she would look at the loop recorder information and talk to the docs and call me back. 

She did call me back and said, "The doctor is in a procedure but I'm pretty sure he's going to want you to come down.  We have an opening on Thursday."

We have been planning a trip to Canada on Thursday so I said, "No, we can't make that but the following week we can."  Here's the problem...Horrific events like this are becoming so commonplace that I'm really not processing things well anymore.

She responded, "Kathy! Your son died on Saturday.  You aren't going to Canada."

"But we haven't seen my family in so long and the kids have been..."

She cut me off, "Kathy, you aren't going to Canada this week and not next week and probably not anytime soon.  Your son is very sick.  Are you okay?"

No, obviously I'm not okay.   She said she would call me back when the doctor confirmed the time.

Sam's cardiologist, Dr. F called me back mid afternoon.  I was in Pocatello painting an orthodontist office.  He said, "Kathy, I want Spencer in the hospital this afternoon and we will do surgery first thing in the morning to place a pacemaker.  He flatlined on Saturday morning at 4:15 am for nearly 30 seconds."

That's when it all came crashing in. 

By the time I made all sorts of arrangements with work, it was after 8 pm before I left home to get to Salt Lake. 

This morning, they wasted no time prepping him for surgery.  It's been a horribly long and difficult day.  I've only slept about 8 hours since Saturday.   It's really hard not to compare this experience to Samuel's.  Spencer's surgery took a little longer but they put in the exact model and he needed two wires as well.  They confirmed he has sinus node dysfunction as well as a nervous system problem.  Because of that, the pacemaker will keep his heart beating but not prevent him from passing out entirely because his veins and arteries have problems.

Spencer is so thin and sick that there is nothing to pad the pacemaker so it's more prominent in his chest and rubbing on bones so he is in so much more pain.  He hasn't been able to do anything on his own.  He has had to be lifted in and out of bed.  He hasn't been able to move himself in anyway so it's been hard and strenuous work to care for him. 

He had to lay flat for 4 hours.  When they got him up to go to the bathroom, he passed out.  I could tell something wasn't right and I didn't want them to make him stand let alone walk.  He started swaying and his face drained of color and he said, "I'm going down."

It was crazy making!! The nurses started yelling for help! Pushing the emergency buttons and yelling at Spencer, "Stay with us Spencer! Spencer, stay with us!  Don't go down!" and then yelling for someone to check the monitors so they knew what was happening, if they needed to start CPR.  They were moving as fast as they could back to the bed.  Keep in  mind, his left arm is tethered to his body and his right leg has an incision in the aorta so at this point, he's a rag doll and they can't move two of him limbs without doing major damage to his heart so it was not an easy task moving a person of just dead weight. 

The room filled with people and chaos and I freaked out!  I don't know how I made it through the maze of people but I ran down the hall and sobbed.  I just can't watch him lose consciousness one more time.  I am just filled with dread.

Things settled down and they got him back in the bed.  He can hardly stay awake.  The pain is pretty bad and he just keeps trying to pass out.  His pacemaker is pacing about 30% of the time compared to Sam's 50%.  His heart is still racing and if that doesn't start to get better, they will need to go back in and switch out the pacemaker for one that has a defibrillator as well. He's been throwing PVC's a lot and I'm not sure what that means exactly.  The doctors are watching them closely.

I just keep being reminded of how serious this is.  So many nurses and doctors heard his story of being in Zion's National Park when his heart quit.  They have all said that he is one lucky boy to be alive.

I got a solid 45 minutes of sleep after all that scary stuff but I'm exhausted.  Tonight, we tried again to get him up and it went much better.  I even made him walk a half a hallway length and he did okay.  He is able to maneuver  his body on his own better than earlier.   What a week! 

Here are the usual keepsake pictures of the whole ordeal...

An apprehensive boy- preop

starting IV's and monitors

He's off

Post op.  He's still on oxygen tonight.  Ugh.
He was so funny as they tried to wake him up from anesthesia.  He was answering the nurse in lyrics from Rap songs.  She said, "You're all done Spence and back in recovery."  Spencer replied, "We're goin down and comin back around."  He even sounded like a black rapper except his speech was slurred but you could tell he was trying hard to be legit.  I was a little embarrassed because all his nurses have been African American and here's this pasty white kid with red hair and freckles thinking he's P-Diddy.   I've never seen Spencer act weird coming off of anesthesia and it was only versed and pain meds he got during surgery but he was out like a light except to answer questions in rap form. 

Well, that's it from the trenches.  6 more weeks and we will do this again...




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Sunday, October 22, 2017

Blow by blow

The bad news keeps coming for Spencer...

Late last night, I checked my email, like I do every night and our Gastroenterologist had emailed with the results of Spencer's blood work and stool studies.  Thankfully, he was negative for C-diff, E-Coli, Salmonella and any other parasites and stuff. 

Sadly, he had some major abnormalities flagged as markers for one of the Intestinal diseases such as Colitis or Crohn's and flagged as a possible Colorectal Cancer.  I can't even!!  His numbers were 3 times above the normal limits.

Seriously. 

I read that last night and had a sinking feeling.  Today, I'm just so spent.  I'm absolutely throwing my hands in the air.  I don't even know... Surely Spencer's purpose in life isn't to just fight cancer now...is it?

I had to leave church early.  In fact, it was the primary program and the children were taking care of the closing song so I left as fast as I could right after the sacrament.  I didn't want one person talking to me because I knew if they did, it would start a flood of emotion I was not likely going to be able to stop. 

I couldn't bring myself to text Spencer this morning to see if he was alive.  Finally, at about 2 this afternoon, I just texted for him to call me when he had a minute.  He didn't call until just a few minutes ago!  I hope my reasoning that no news from him or his roommates is good news...pans out.  He is okay.  I told him gently about the latest GI results and he sounded annoyed and discouraged. 

"Great.  I'm going to have cancer!  It's never easy with me.  It's always the most extreme!"

"It's not cancer Spencer.  It can't be.  You will be okay.  We will work through Crohn's or Colitis.  I know a million people with those.  We've got this."

I have had to take the morning off from work tomorrow so that I can get all his doctor's called, the device team.  I am going to try to get Spencer into Sam's Cardiologist because I'm doing this one more time.  I'm so over trying to manage his arrhythmia's with medication.  There is never any warning when it happens.  What if it happens while he's driving?  How is he suppose to remain independent?  I don't know what to do?  He is suppose to be coming home on Wednesday but I am so scared about him driving.  I'm considering going down to pick him up and bring him home.  I don't know. 

I will also be trying to get his GI to move his surgery up in light of this new information.  Surely waiting two more months is not in Spencer's best interest. 

These are trying times.



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Saturday, October 21, 2017

Heart Stopping Moments

At 4:45 this morning, the phone rang. 

I rolled over and saw that it was Spencer.  I actually thought nothing of it.  There was no sinking feeling.  No wondering what he wanted at 4:45 AM.  This is especially strange since I knew he and his best friend/roommate were spending the night in hammocks in Zion's National Park.  They had no cell service.  The last time I spoke to Spencer was at 6:30 pm Friday night as they left Provo. 

"Hey Mom, how's it going?"
"Fine, it's early.  How are you?"
"Well, I don't feel very good, can I go to the ER?  I'm having problems.  My heart stopped.  I was gone for 30 seconds Mom.  Can I go to the hospital?"
"It did? Ya.  What hospital?  Where are you?"
"Well, we are almost there.  St. George."
"Okay.  Yes.  What happened?"
"I don't know.  K. found me.  He checked my pulse and there wasn't one.  He was trying to figure out what to do, shaking me, trying to wake me up, start CPR but then I came back.  It was about 30 seconds he thinks."
"Okay.  Call me when you know anything.  I love you Spencer."

His voice was weak but not worried or alarmed. He sounded flat and distant and disoriented a little.  My voice was calm and the conversation resembled more like a recipe exchange with friends than the frenzied moment you might imagine. 

I hung up the phone.  I laid in the dark, looking out the darker window and somehow felt afraid to move; afraid to feel my own self breathing.  That hour before the sunrise is the darkest.  I was not comprehending the conversation I had just had.  After several minutes, I thought I better text him his medications, dosages, important things he needed to remember to tell the physician or have his friend tell the physician.  I sat up and texted that. 

I stared into space for three more hours before I could get myself out of bed and in the shower, still no word from Spencer.

Just before 11, I heard back from him.  By the time they got to the hospital, his heart rate was back up to 50 but there was not a steady beat for quite some time.  It would spiked to nearly 100 just laying on the stretcher, then drop really low again.  There are a few gaps in the story at this point.  He said they let him go when it was stable, of course after a battery of tests and imaging.  They headed back to Provo. 

When he called the second time, he said, "You know what the big miracle was mom?"
"I'm assuming there were more than the obvious- that I am speaking to you after your heart stopped beating."
"Ya.  We were hanging in the trees, sleeping in hammocks.  K got too cold so at some point in the night, he packed up his hammock and moved into the car.  I woke up some time later and noticed he was gone.  For some reason, I  thought it would be best if I took my hammock down too and move into the car.   I fell asleep and K. heard me breathing weird and sat up with a light.  He could see that I had stopped breathing and checked my pulse.  There wasn't one.  If I had of stayed up in the tree alone, it might have been a different story mom.  That's a miracle!"

At this point, we don't know what happened.  Judging from the arrhythmia the doctors witnessed, they are assuming that is what caused his heart to stop.  Spencer has a loop recorder in his heart that constantly monitors what his heart is doing.  He had taken the remote out of his pocket when he went to bed and put it in a backpack.  Normally, when he has 'events', he can push the button and it will flag that time so they can go back and see what was happening. He wasn't able to do that and his friend didn't think of it or probably even know it existed.

When he got home to Provo, he downloaded his recorder and sent it to the device team at the University Medical Center.  As the day and evening has gone on, he is more upset and shaken up but he said his friend was probably doing a little worse. 

This morning, I told the kids just before I left the house.  I just couldn't stay put.  I was pretty anxious but holding it together. As the day has dragged on, we've each had a moment or two of just raw emotion.  Today, I had to make a cake I had promised to make and it was pretty involved.  It kept me occupied for quite awhile and my friend came over and watched and visited for a bit while I worked on the decorating.  After she left, I kind of fell apart.  I was working on Spongebob and he was looking awful,  I threw him across the counter and started crying.  Sam came in the kitchen and put his arms out and said, "Ma, I think you just need a hug."

Honestly, I'm still trying to process this.  I am so emotionally spent. Nothing makes sense.  My emotions are all messed up and my reactions are completely inappropriate and in-congruent.  I have no idea where we go from here.  This is the second time in a year his heart has stopped.  I really want to push for a defibrillator and pace maker.  The thought of putting another one of my kids through heart surgery is exhausting to me. 

I don't know how much more we can manage.  I called Spence tonight to check on him and I am worried that he won't be able to sleep tonight.  I was right, he's pretty anxious to go to sleep.  I am too.  I'm afraid I won't hear my phone if he calls.  I told him to call me if he can't sleep or gets too anxious and carried away in the residual shock of the day.

I am holding on to one thought today...God sent him back!  He could have stayed, on the other side, I suppose, but he came back.  There is a reason he is here on earth still.  At first, when I started thinking about the events, I was a little angry that God couldn't make up his mind and I'm not impressed with the back and forth, dead and alive.  Then, I heard a small voice say, "I am keeping his sick and weary body alive.  He is not done yet."  I realized that it's the disease process that is taking the toll and trying to take him out of the game and it's God who is literally giving him the breath of life.  My kids give new meaning to the phrase- borrowed time. 

On a bright note...Here is the finished cake for Shelbie's best friend's birthday tomorrow!
White Almond cake with a raspberry filling.  Spongebob and his pineapple house are made of Rice Krispy treats



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Thursday, October 19, 2017

Staying engaged

One thing that has always bothered me, as we have journeyed through chronic illness, is the way we connect with others; or don't connect with others.  It's always been challenging and frustrating and irritating.

What I often hear is, "Well, I know I can't complain because you have it so much worse!"

Or, they ask how we are doing and after I wrestle in my head about what version to deliver, the sugar coated one or the closer to reality one, they say, "You know what happened to us?" and they proceed to tell me all about their latest battle with whatever.  I seriously listened to over three hours of someone else's health crisis this past week. We didn't connect on any level!  It was the most depressing conversation I've ever had...probably much like this blog has become!! Depressing!  Anyhow...

I never really know how to reconcile either of these scenarios.  I try to listen to them but leave feeling more lonely than when the conversation started.   I don't like comparing crosses because everyone has something hard going on in their life and our daily dealings with adversity are not worse than anyone else's.  Just different.

The second exchange feels more like a battle of one-up and I don't like that either.  I never feel like I need to compete for the worst life.  I don't want that title!

So, this week, I was listening to a man named Brady Wilson on a TED talk and he finally made sense of this for me.  I've been thinking about it all wrong.  We all want to feel connected.  Sometimes, the only way we can feel to do this is by sharing a similar story.  However, what we really need to be doing is investing in someone's story.  Instead of trying to find a common thread to stitch together some sympathy or superficial empathy, find out what, in their story, matters most to them.   Of course, this kind of interaction takes some time and investment.

He explained...

When we truly connect with someone, oxytocin is released and that increases our sense of trust and bonding.

When someone helps us see the possibilities in impossible situations, dopamine is released and we experience a renewal in motivation, creativity but most importantly, feel valued.  This is life altering information!  My biggest battle in this whole affair is feeling like we are backed into a corner.  There are no earthly answers to the problems we face.  There really aren't.  I understand that.  We are truly living on Faith and a Prayer.

I've had moments, when someone just lets me dump the contents of my tired mind, and together, we watch it spill out, all messy.  Even though, the answers don't come, sharing the worst feels less impossible. There is something about that process, after I get over feeling embarrassed and weak, that renews my hope in making it through another day.  It truly does renew a person's motivation to keep going.

Finally, Mr. Wilson suggests that when we have agency and someone believes in us, serotonin is released and we can begin to make progress.  I'm not exactly sure yet what that looks like but maybe the progress is just that you manage to keep going.

My favorite quote from him is, "People rarely leave your presence neutral.  They will leave engaged or not."

To me, this is even the best parenting advice too!  Imagine if our kids felt connected to us?

I hope I can do better at investing in the people around me.  I've certainly not been doing a very good job of that.  It's hard to put yourself out there when you have nothing but hard things to report on so you withdraw a little and little by little, there's nothing left of you; just a shell of who you once were, if you can even remember who that was.

I've been doing some thinking this week, trying to calm down after a disturbing and frustrating last week.  It helped to step back for a bit.  I was so bugged when I heard that President Trump cut off subsidies in the health care exchange.  I just had to shut down any connection to social media, I think I spent one solid day in tears.  I have since heard that maybe Congress fixed that but honestly, I'm scared to look.  I have one more week in denial before I have to face the insurance debacle head on and find a new company who is willing to take my every last dime and then some.

But then, I heard this scripture from Psalms-  "In the morning, I will order my prayer to Thee and eagerly watch."  So, for this week, I'm trying to eagerly watch and stay engaged.



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Saturday, October 14, 2017

Welcome Back Winter

Today, Shelbie had to go up to the Teton Valley to find the perfect spot for a location photo shoot on Monday.  I took the day off from work and drove her up there and her friend came along too.  It was such a beautiful drive. 

The farther we got from home, the more I could breathe.  I love that within an hour from my house, you can escape into a world where pine trees and aspens kiss your forehead with the reaching rays of the sun; even on a snowy day.  It was so beautiful near the top of the Tetons.


Pine trees were made for snow.  I love how they carry the weight of  the snow, branches that were meant to bend but not break.

We could almost touch the clouds
We shared our view with these guys...


I have been working at a break neck pace throughout the summer and even though I am still so far behind, it was nice to spend some time with Shelbie and her friend.  I miss being with her.  We see each other every day but we never just 'see' each other.  I didn't realize how much I miss just being with my kids so today was a healing kind of day. 



We got home around dinner time and took Little Miss swimming.  Shelbie adores her sister.  The boys do as well but they couldn't be with us tonight.   They are so good for each other.  I'm glad that she can still be part of the kids' life even through the ups and downs and changes that happen.

 Tonight, her mom came as well.  Yes, to many it may seem odd that two ex-wives would be kind to one another, even spending time together. There was a day when I'm sure neither one of us thought this would likely happen but life is too short for contention.  It doesn't just happen.  It takes two people willing to let the past go and find some common, peaceful ground.  What I love is that Little Miss is surrounded by so much love her in life.  She has this network of caring, amazing people, all with her best interest at heart.  Little Miss has been good for me too.  So, it's forgiveness and peace for the WIN!

Little Miss, Shelbie and Shelbie's friend Yolo...

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Thursday, October 12, 2017

Lost and Found

From September 29th, 2016, I wrote this on my Instagram page with the following picture....
      
"There is something so intriguing about the lost and forgotten.  The dying but not yet dead.  
To watch something come alive again is a fascinating, albeit overwhelming process
but therein lies the purpose. "


This was a lost and forgotten house I was asked to design in the Teton Valley.  It is a small home that has been in a family for several generations, I believe it was built in the early 1900's.  Two winters ago, a pipe burst and water filled up that home throughout the winter and spring.  It seemed that no one had noticed.  The entire house fell apart, mold took over, it seemed a total waste to the family.

I'm sure many discussions were had if the house was even worth salvaging.

So, the process began last fall.  I worked with a great contractor and together we made this house come to life.  The left side pictures were where we stripped the walls down to the studs to reveal wood that had been over taken by mold and grime.  We arranged to have every stud and brick blasted with baking soda and crushed walnuts.  It stripped off the old and made the wood and brick beautiful again as is shown on the right side.


Baking Soda and Walnut blasting

A view from the kitchen down the hall to the bedrooms


From there I measured the existing house and designed a plan to create a new space to allow this family the opportunity to gather again.  All the dashed lines are the walls we removed.

upstairs level
 The new main floor plan and attic plan






Look at it now!  It is hardly recognizable from where it began. 



Kitchen to the front door

Living room


Master Bathroom

This is the same littered upstairs hall from the first picture.





From the kitchen to the bedrooms


This house has become a beautiful retreat at the foot of the Grand Teton Mountains.  What remains are the bones of the house, the soul, the memories from so many tender family moments.

I love my job.  I love seeing the creation of light and space.  I love the possibilities, the way lines on a page can one day breathe life.

In life, I love to find the lost and forgotten and help them feel found.  I love to polish off the sharp edges, clean up the spirit, bring light to the dark corners of a soul and remind them and maybe even the world, that they do have value and they are worth the investment of time and tender care.

This house has been an ongoing reminder to me even an archetype, of the world in which we live.  So many people around us have been forgotten, a little tarnished; broken.  People come and go from our lives, our paths cross and weave into one another's journey and we either find the precious parts that retain their Heavenly value, or we can't see past the damage, the way life has bent them and misshapen them.

Find the souls that have been lost.  See the light that remains.  Feel after the bones of their soul and sit for awhile, witness the goodness.  It's there.  Lost but now it's found.
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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...