Skip to main content

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.

For 2 years, I didn't get to see Spencer except the 4 times we were allowed to Skype.  When he left, he was in relatively good health.  I didn't know any different. When he came home, the toll his mission took and the advances of the disease process were staggering to me. Everything was different all at once instead of one day, melting into the next.

I also didn't realize just how hard it was to send Spencer on a mission.  It was a blessing I didn't struggle with his absence while he was gone, but boy, do I feel the weight of what I was asked to do, now.  I think this is all contributing my emotional month.  So many changes.  So much time being strong.  So much energy in faith and hope.  Now with so many problems to face, it's all just a little too much.

I know that soon, this wave of anxiety will subside and things will get back to the day to day...hardly noticing how the disease is acting but boy, until then, this is not my favorite place to be.



Photobucket

Comments

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.

"Clean."

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.…