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Showing posts from October, 2015

Angel of death

I'm not sure I completely understand what happened today...

It started out like a typical Friday.  Fridays are met with a bundle of fatigue from the harried pace of the week and a hope that maybe a calm weekend is in store.  I mostly like Fridays.

I finished cleaning my first house at 11am.  I was headed to my second house, and as I past the donut shop, I had the thought that I should stop and take a dozen donuts to the couple whose house I was headed to clean next but, I was running a little behind and I didn't want them to think I was not showing up, so I decided I would make a donut run after I cleaned their home.

You see, I have been cleaning for them the past 4 years.  In those 4 years, I have become very attached to them.  I always looked forward to spending an hour or two with them.  They are so very generous, good humored and completely loving.  I loved hearing the husband talk about the chickens he loved so much who roamed in the back yard.  Each week, he would share…

Suffering is optional

I've been seeing this quote around a lot lately...
"Suffering Is Optional"
Is it?  Is it really?

 In a lot of ways, I feel like the last three months have been an extended lesson in suffering and that is so frustrating.  One would think that after all we have been through, survived, overcome, battled; a little weight loss and breathing problems wouldn't be the proverbial straw.

It hit me, as I have pondered on this notion, that God doesn't just give us the same old problem twice.  His plan is never under revision or sending us back to try again, he wants us moving forward, growing, expanding.  I don't see God as some high strung school teacher, with an arsenal of punishments if we don't do our problems right the first time. Everything God does, builds upon the thing before, including trials.

So, even though it feels like the trials with Spencer are nothing new and look an awful lot like other problems from the past, there must be something different to …

Affordable Health Care

I will soon be going into my second year on the affordable health care exchange and I'm really not happy about that.   Today reminded me just how crummy this system is and why I left the Utah clinics a couple of decades ago.

I don't think I have mentioned this but Spencer had an accident three weeks ago and messed up his shoulder.  His arm just droops out of the shoulder joint.   He waited a week to tell me.  It took another two weeks to get an appointment to see a doctor and today was suppose to be his appointment.

He got time off work which is virtually impossible to do.  They aren't too happy with him but I'm not sure what else they expect.  He works full time, has no benefits and his hours are 7:00am til 7:00pm. What else is a person to do when they literally have no time to get sick?

He got to his appointment and they had somehow neglected to put him on the books...they wouldn't even try to fit him in even though it was their mistake.  To say Spencer was ups…

I'm not one of "Those" mothers...

Thank goodness I'm not one of 'those' mothers...

But...I use to be.

I use to care if my kid started kindergarten fully expressing algebraic expressions, finding x's and divided 'y's, easily reading a Harry Potter book in an afternoon and well, the alphabet?  Ya they had learned that years before Kindergarten was on their little radars. maybe not.  I wished for kids like that.  I had high hopes for them, fully intending that someday, they would be all that and in the AP honor classes, ready to start college in 9th grade.

I use to get frustrated when they came home with B's and not A's.  I use to care that while my friend's kids were busy going over flash cards, monitored activities to learn new skills, dance class, little league, karate, basketball, gymnastics and playing a 5th of Beethoven; we were not doing that, exactly.  We were nursing fevers, checking out a new room at the hospital, doctor hopping...but boy did I try to be 'that&…

I think to myself

I think I have determined that it is the incongruity of our situation that makes it hard-ish at times.

One day, everyone is doing pretty good.  Everyone is happy, content, can almost hear the hum of a life of ease in the distance of the day...and...I think to myself...things aren't so bad after-all.  We can do this.

The next day, it all seems to fall apart.  Everyone is sick with something, new symptoms crop up, there are more questions than answers...and...I think to myself...we are never going to survive this!

One day, Spencer is sending video clips of him with all the energy in the world, the next day...flat out, hardly able to breathe.

One day, Sam is enjoying life, no complaints, everything is great in his world, but the next day, his mouth is filled with sores...a horrible drop in white cells and neutropenia is setting in worse than ever.

One day, Shelbie is busy, working, happy, content and everything is great in her  world and the next day, she is complet…

A Curious Work

It is a curious work that God does to prepare us for the adversities and lessons yet to come.  One curious work builds upon the last.

In the moments when you stand apart from whatever is happening and view it from a perspective of eternal collections, it is really something to ponder.

Lately, God has been weaving death in and out of our day.  This is not to say that anyone is dying, but when you spend an entire year in the grips of uncertainty, pressure building in the heart of your children, problems with diffusing oxygen and other malfunctions, the thought crosses your mind a time or two.

Even looking back on my life, it's as if the major theme God set on my path was learning about death.  I have said goodbye to more dear friends than I can count.  Many of those friends, I had the privilege of staying with up until the moment they passed into the great beyond.  One such friend was Dana.  I have written about her more than once.  She was my best friend and passed away when I wa…

The Maze

Tonight, for Family Home Evening, we went to a straw maze.  I have never been to one before so it was an adventure for sure and it was a pretty popular place to be as I'm sure every one in town had the same idea.

It was harder than I thought it would be.  I found it interesting as we followed each other along in the dark how many people I heard complaining about their experience.

Phrases like:
"This is dumb."
"I'm so tired of getting nowhere!"
"Can we just get out of here yet?"
"I hate being lost."
"Could this be any harder."
"This is my third time back, I know what I'm doing, follow me."

I just followed along, chuckling to myself.  It's a maze!  People knew they were buying tickets for a maze.  I don't think I saw one person who was dragged there against their will and forced to play along.  If you don't like the idea of running around, in the cold night air, feeling lost and tired, then why even co…

The Part You Don't See

There are so many different parts and pieces to living with a progressive disease that gets more and more complicated as the days wear on.

Many of the struggles are visible and if they aren't visible then it's just the readily acceptable fact that disease makes life emotional; the ups and downs rarely need an explanation.

But, there is a side that most people don't see.

They don't see all the day to day things that go undone because I am so mentally spent and physically spread thin.

From last Thursday to Sunday night, my kids ate nothing but Pizza Hut pizza.

We haven't sat down to a meal as a family in 11 days.

The house hasn't been cleaned in, I'm afraid to think how long it's been.

I'm sure I won't have an electric bill this month because the majority of the lights are burnt out.

The windows in my house make every day look cloudy and overcast.

The dog is now refusing to go out to the backyard to do his thing because the grass is at least …

The best

Our trip to Utah this week was filled with family time.  I felt re-energize to see the kids enjoying each other's company.  
    We arrived a little early and Spencer was still in class so we wandered around the college taking pictures and texting them to him so when class was out, he had to come and find us according to the was amusing, a little family scavenger hunt.

     We went for an early dinner during Spencer's break.  When we came out, I wanted to get a nice picture of the kids.  Well, when it comes to pictures, my kids are the worst!  They will never be serious and all I get are dumb looks and ridiculous smiles.   Shelbie wanted everyone to stand on these concrete pillars but she needed the boys to help her get up on one and they weren't having it.

  I settled for this pose.

 It's been a long time since we have spent any time at University of Utah Hospital.  The last time we were there was about 16 years ago.  Sam had his first bone marro…

Invisible Threads

This is a quote that is sandblasted in glass as you walk into the University Hospital at University of Utah.  It struck many ways.

My actions in life have always been for the good of my kids.  Even before I had kids, the things I did, the people I met, the experiences I had, prepared me for this cause...taking care of my kids. Maybe all mothers feel this way, I don't know.  But, without a doubt...I have been led to this point.

As I read this, I also had the overwhelming feeling that all I really want in life is results.  Good results.  Long lasting, happy results. I want results that will fix my kids, though, I know, that that has become water under the bridge.  There is no fixing anymore.  There is sustaining and supporting but that isn't the same as fixing. It's not giving up or giving in, it's just a shift in thinking.

We met with our new Cardiologist this week.  We all really like him.  He grew up in Canada, in the same place where I was born.  He knows al…

The Parable of the Tightrope

Sunday evening, when the shadows were long and the sun was low in the sky, Sam and I headed to the park for a little fresh air and slack-lining.  If you've never heard of the sport, it's a 2"wide webbing that you secure between two trees, about 6' off the ground and then walk across it and do tricks on it, like a tight rope.   Yes, you read that tricks.

Sam loves to slack-line.  He is pretty darn good too!  I love to watch him practice but I don't get the chance very often.  Actually, I think Sam likes it so much because girls like to watch him.  There was a never ending audience of young college girls and even a photographer who asked if she could take his picture. I can't say I complained much since the people who stopped to talk to Sam thought I was his friend...not his mom!  ha ha.

Back to the story...

I decided I wanted to try to get up on that web so with Sam's help, I made it up.  My legs shook and wobbled as I tried to walk across the l…

The Dull Chatter is the Loudest Voice

One thing I have learned in my gathering of wholeness, is that the dull chatter that loops in my head is more often than not, the loudest voice I hear.

That is not always, if ever, a good thing.

In my obsession of keeping my head straight, I have a Canon of sorts.

A Canon of goodness that I can turn to when I need to change the soundtrack of what can be a discouraging life.

Below, are some of my favorites from my personal Canon of inspiration.

"If there were a referee to whom I could cry foul, how would I answer if asked: What of the good life you were given? You didn't question being blessed with the wife and family you've loved and enjoyed. You never asked “why” with your good fortune; why do you suddenly find voice to question this event? The truth, of course, is that the good things in our lives are accepted as givens and remain unquestioned. We take notice, and question, only when events hurt or frighten us." David Malham- NY Times Op/Ed on grief

"What if o…

Day by day

Life is puzzling isn't it?  Well, my life is anyways.

I can be going along, just fine!  Totally 'normal'.  Every day is just another day in an even stride and rhythm of life.  And then, without warning, we trip up and everything is off.  This isn't at all how I wanted the last 8 weeks to be.

I knew that Spencer coming home was going to take some adjustment and I knew that there would be tests to catch up on.  I didn't know to the extent and extreme that this would affect me. I didn't know that for two years, Spencer didn't really tell me the truth about his health.  I didn't know that everything would fall apart so fast.

I saw this quote and in a small way, describes how I am feeling.

With Shelbie and Sam, I see them everyday.  I seem them struggle one day but then they have a few good days.   Day by day, it seems it all averages out and you don't notice how this disease changes things and dissolves away the healthy stuff in such subtle ways.