Skip to main content

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 completely out of energy, sleeps for 12 hours during the day after getting 10 hours of sleep the night before.

And...I think to myself.

Remember, I've been prepared for this moment...dig deep.  Reach.  Stretch.  There are angels here.  it's all going to work out.  Somehow.  Someday.  Maybe not this day...but some day.

Tomorrow is an IVIG day for Shelbie.  How is that another month has come and gone? Spencer has developed the new symptom of vomiting at random times and random places with random food he has eaten. I'm not sure what to think of this.  Getting a deep breath when he is trying to sleep is harder and harder than before.   And because that isn't enough, he has injured his shoulder.  It is drooping out of the socket as the doctor says...He meets with the surgeon on Monday.  I'm betting the rotator cuff is torn.

And I think to myself...



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.…