Skip to main content


It's been a long time since I let so much time go between posts.  Life is hectic and a little stressful these days.  So, today I will just hit on the highlights for the week.

Spencer got home last Sunday and his main squeeze Abby has been here all week as well.  She is lovely and delightful.  She carries with her this sense of calm and peace.  Her spirit is so sweet and she seems to just be part of the family.  It has really been awesome to have her around.

The bathroom is coming.  The boys tackled the tile laying earlier this week and today I grouted and painted. I'm not happy at all with the grout so I think I will re-do it early next week.  It's not the brand I am familiar with and I didn't love how it went in.'s progress.  I just have to finish the vanity and then get the plumber over to hook everything back up.

There have been some stressful moments this week- our oncologist had to cancel our appointments for the 20th.  The only days he could reschedule for, we already had booked days.  Now we are out until the end of August which is not great.  Even his nurse said this made him a little nervous but we really have no options.  I feel that heart and lungs are giving us more grief than bone marrow right now.

Friday afternoon, Shelbie was asked to do a family reunion photo shoot for our good friends at Elk Lake, a couple of hours from home.  They invited our family to join theirs for dinner as well.  They are a great family!  Everyone was so friendly and fun.

It was curious to me, to see how different my kids are from normal kids their age.  Our friend's grand-kids are around the same ages of my kids and they were so full of energy!  The difference was staggering to me how little energy my kids have.  I never really notice how much we have declined in quality of life until we leave our little, quiet existence and mingle out in the world.  Sometimes, it rattles me a little but then we get home and everything seems alright again.
Elk Lake-2016 Such a beautiful place! 

On the porch, relaxing. Spencer, Abby, Shelbie, Sam

We had a major setback on our way home last night...For about 45 minutes of the trip, we were driving on a dirt/gravel road that is extremely rough and in the middle of nowhere but a bunch of hills and mountains.  It comes out by Henry's Lake in Island Park.  Just as we got to the paved highway, my battery and seatbelt lights came on the dash.  I could feel my engine start to sputter and I think my heart stopped for a minute.  I couldn't figure out how I could have a low battery when I was driving.  I instinctively shut everything off- the radio, the AC, the lights and warning signals turned off.  I had Shelbie look through the owners manual to find out what it means.

The owner's manual said it was a sign of a major malfunction in the electrical system or alternator and to pull over immediately.  I was not about to pull over.  I kept thinking about how high the bill would be to tow my car from Island Park which is just outside of West Yellowstone, home.  So, I just kept driving and the warning lights came back on.

I was surprised by this little issue.  I was thinking if anything was going to go wrong, it would be a tire problem.  The road was so rough for miles and miles and my tires, as it is are not good.  They are in terrible shape.  Every week, I have to put air in them.  They lose nearly 15 psi every few days.  I put air in them before we left and I noticed they were low again when we left Elk Lake.

I was so tired and had a splitting headache.  Tired to the point I could barely keep my eyes open and then to have the windows up and no fan or air moving in the car sort of complicated my situation.  I finally decided if we could make it to Ashton, I would pull over.  We did make to Ashton and I pulled into a gas station to get us some cold drinks.  The kids can't regulate their temperatures very well and don't manage the heat at all.  I stayed in the car with the engine revving in a lame attempt to keep a charge going while the kids ran in.  I Googled the problem to see if there was anything I could do myself to keep the car running.

All I found was that we were in a dire situation.  The Hyundai forum said that if that kind of problem happens at night you have very little time to pull to safety because the headlights will drain whatever power you have left. It was already almost 10pm and dark.  When the kids got back in the car, I announced that the only way we were getting home was with a combined spirit of faith so we had a prayer that we would make it home safely and that the car wouldn't die.

That last hour of the drive, I bounced between being angry, frustrated, anxious, fearful and sad.  It really is unbelievable that every day I have to deal with some crisis!  Oddly, I didn't even try to make sense of why this was happening to us.  I'm not sure if I was feeling too overwhelmed to care or if I really didn't care or maybe I actually left the problem in God's hands.

At any rate, we made it home and I dropped the kids off and then Sam followed me to the repair shop.  I knew that as soon as I turned my car off, it wasn't going to turn back on and I didn't want to pay for a tow truck.  It sputtered and hesitated all the way to the shop about 20 minutes from home.

We'll see on Monday what kind of bill that is going to be.  I have felt sick all day.  Sick and tired. But as usual, we have the difficult situations that somehow, someway, work themselves out.  I am trying really hard to hold on to the blessings in the chaos...we made it home!  That is pretty amazing not to mention merciful! It was an answered prayer.



Popular posts from this blog

Some Results

I was surprised to get a brief update from our doctor this morning.

They did not catch any seizure activity last week.  She said that while that may be good news, it didn't rule out deep structure seizures.   I asked if the test gave any insight to the cause of the slowing of activity in her brain and these were her words.

" No, this does not give an answer ... But it is just one test, done one time ..."

We are still waiting on the MRI results.  I'm not losing hope.  I know, I play this game ALL THE TIME...I wish for problems that no one in their right mind would wish for.  I only do that because it's usually the option with a fix.  Of all the things they are considering to be an issue for Shelbie, seizures are the simplest explanation and medication would manage it.

I'm certain we aren't going to find a solution to her problems any time soon.  While I sat in the waiting room during her 2 hour MRI last Thursday, there was a couple in the room as well.  A…

Random Saturday

Whenever I feel like we are careening out of control, I declutter and clean.  By midnight on Friday, I had 1/3 of my living room filled with stuff I didn't want.  Today, I made a couple of trips to the thrift store and the dump.

Ahhh, I feel like I lost 20 pounds.

When Sam came home after his first week at school a while back, he said, "Wow, my room looks the same."

"What did you think your room would look like?"  I asked.


Turkey!  He came home this morning with his laundry and was a bit despaired.  He said, "Mom, you gotta help me with the smell in my apartment!  I can't stand it anymore! Do we have any Ozium?"

He went on to explain that there is no garbage disposal in the kitchen sink but food gets crammed down there anyways.  He said he keeps putting the little metal drains in that are meant to catch bits of food but his roommates take them out.  He's about fed up.  And while he was on his rant about boys and their leve…

A Witness

I was expecting just another run of the mill night at the gym last night.  The kind where the 'meat heads' stay at their end of the gym grunting and groaning to sound strong and I would claim a little corner in the room where the Yogi's hang out and Plank, and there I would Spin on a bike for a few miles, do some rowing, a little TRX and finish up with some free weights.

Last night though, I actually decided to do an easier workout and took an inclined walk on the treadmill.  There were no meat heads in far end of the gym.  No one really at the gym at all.  For the longest time, I kept pace with an old guy on a bike behind me.

But then, a man and his son came in.  I knew them.  I knew them well but they don't know just how well I know them.  They have a son who passed away from Cystic Fibrosis a little while ago, he would have been Spencer's age now.  They have a younger son who also has CF.  I knew his wife and mother in law back when my kids were being diagnosed.…