Skip to main content


For some reason, I really like people to think I can handle my life.  I mean, don't we all want to look and feel competent, not only to those around us but to ourselves?  I'm not referring to some form of vanity and pride as in...look at me, I'm so good at managing my trials.  Yay me!  Because...I'm not that good.  I spend most of my life picking myself back up and not gracefully either!

Just simply, the feeling of moving forward and managing the hard stuff as opposed to laying in bed in a depressive state of revolt at the fiery tribulations.

Or, maybe it's that I want to have courage.  I want to look courageous as opposed to cowardly but then I heard this definition of Courage.

Courage- "to embrace the true story of one's heart"

And I realize, I'm not courageous at all.  I hate embracing my story.  When I try, it's painful and I feel like I'm wearing a pair of skinny jeans I was poured into and forgot to say 'WHEN'.  It's true.

As luck would have it, I was somewhat prepared for this act of courage I'm about to share...

After a doctor's appointment, I began to run a few errands.  On the radio was a devotional and I don't really know who the speaker was but I pulled into the DMV parking lot to write notes on the back of my bank statement; the one that reminded me of my pathetic existence in life.  He was talking about spiritual vulnerability and answering the question that Nicodemus asked of God, "How can these things be?"- in terms of a man being born again.  The speaker went on to discuss how even the greatest of the greats had a moment when their inadequacies were exposed; Mary!  Christ's mother!  She was nothing.  A nobody.  A lowly handmaiden and then all of a sudden she has to deal with a pregnancy and she's not even married! And then he talked about Enoch and even Joseph.

The whole point was that these people had to admit they were nothing but with God, became something.  They were spiritually vulnerable and courageous.

I sat in my car thinking what amazing thoughts this guy was sharing.

Well, my next stop was the pharmacy to pick up a prescription for Shelbie.  Her underarm is now full of lumps. In just three short days, one became many.  The doctor wants to try her on antibiotics to see if he can get the swelling down in her lymph nodes so I was picking that up.   The Pharmacists said, "I have a few for Spencer as well, do you want to get those?"

I got a rejection letter from my insurance company saying they weren't going to cover his lung medications so I was surprised.  But sure enough, they were there and the insurance company did actually approve them.

The Pharmacists got everything rung up and it was over $800!

Normally, this is where I would inject some clever little sarcastic comment and brush it off and sound like I have this all under control.  And I would hear people say in some distant day..."You are so strong!"  and I would say in my heart, "I am not strong at all, you have no idea.  I'm witty, not strong. I'm a cop out."

Instead, my eyes filled with tears and I knew there was no way I could pay for the medicine and there was no way I wanted to be crying in front of the entire pharmacy and grocery store I had to make my way through.  That little corner of the store was spinning and I was finding it hard to breathe but even harder to say what needed to be said.

"I'm sorry.  I can't afford to pay for this." and at that, I felt the burning eyes of everyone else in line as they watched him take it all out of the bag.
"Doesn't he need it?"  The well meant Pharmacist asked
"Yes, he sure does but I just don't have the money.  I'll find some money and come back for them.  Is that okay?  Maybe in a couple of weeks I'll be in better shape."  Not in a couple of weeks or months or years will I be okay.

I can't believe I had to choose.  I had to choose between medicine for my son and paying my bills.  Not bills from something fun we did like a trip to some exotic place...but bills to keep a roof over our heads, food in their bellies and clothes on their back.

As I made the walk of shame to my car and thoughts of...what will I tell Spencer who left for his 16 hour work day, on a dusty farm today, with an Asthma attack underway as he walked out the door...tossing through my mind, I had a hard time reminding myself why I should bother to try and some catastrophic accident to do us all in seemed far more advantageous than one more day of this.  Yes, that is what I thought and it's not the first time that thought has crossed my mind...since I'm being courageous here!

The next thought was that God was in the purpose of the day.  He placed me in my car, at a specific moment to hear some well thought out, strung together sentences about being spiritually vulnerable. I heard the already familiar stories of already familiar scripture people and how they went from nobody to somebody by being spiritually courageous; by asking the question..."How can these things be?" and then watching the wonders of Heaven unfold and divine purposes made known.  Hearing about these stories today, somehow felt different and important to me.

While I'm sure I will eventually stop crying and the bitter taste of shame I am gnoshing on will give way to something less salty, and this experience will soon be yesterday, it's not easy.  It's not easy, even impossible to see how I can sustain the expense of this disease.  Not only the monetary drain but the emotional drain as well, I will continue to be an active participant in our suffering and continue to ask God daily...'How can these things be?' and then with my meager effort to be patient, as patient as a flawed human can be, will wait for answers to come.  Viable, long term answers, answers that I know will come with enough time, enough faith, enough hope and enough faltering...because that's what I seem to do falter and flail and try again.

These are the kinds of days that we really face around here.  More often than not and it's hard.  I wish I could say something clever and witty but today is just hard and today, it took a lot of courage to be me.



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.…