Skip to main content

That space

Here we are that space of calm.  That space between the last storm and the next one you can see gathering on the near horizon.

I am glad we had the hard talk with Sam and Shelbie on Thursday.  While it's hard to face uncertainty, talking it out gets you much farther than being stuck, alone in your own head.  Sam has been making jokes about his situation, taunting me with acts of clutching his heart and falling to the floor.  Not funny really, but choosing to joke about it is at least a sign that he is thinking and sharing something, in some way, even though I would much prefer he use words than sarcasm and not so funny joking around. It's progress, believe me.

I was able to meet with the school counselor on Friday morning.  Sam had decided in our talk that his preference is not to be put on homebound school until we get all this testing done and a plan in place.  He would like to go to school when he can.  As for the missing 5 weeks of school and homework since Thanksgiving, we talked about reducing the work that is pending.

The counselor was so great as we talked about the things we are facing.  He was willing to talk to Sam's teachers for me and request a lighter workload for Sam until he is in a better place to cope.  He agreed with Sam's plan to try to stay in school instead of going on homebound.  He left for a few minutes to talk to administrators and the special ed teacher just to make sure everyone was willing to work this plan.

When he returned, he said, "I've got a great plan for Sam!  As long as we see him doing the very best he can, we will put him on a pass/fail system of grading."

I was so relieved!  That was much more than I was expecting but totally appreciate it.  Part of me feels bad that we are asking for special treatment but then the words of the Psychiatrist came back to my mind...we aren't normal.  We don't get to be normal anymore.

So, for now, things are relatively calm.  Last night was hard.  The kids are so restless!!  So restless with life.  They want to run away, move, go on a long vacation all in the effort to be happy.

Shelbie and I had a rough day on Saturday.  I just wanted to have a fun day and she was upset with a variety of things and just wanted to go home and sleep.   So, we went home and she took a long nap.  Her dad came by with Sam so he could pick up some clothes he needed and they invited Shelbie to a movie and dinner...something I was hoping to do with her.  She immediately perked up, happy again and gladly left with them.  I was left feeling pretty rejected.

It was a long night!

When Shelbie got home late, I asked her what I could do to help her.  I feel like home has become this suffocating place where bad things happen.  She agreed.  She thinks our house is depressing and closing in on her and boring...let's not forget boring!  I work all the time and never do anything fun.  Yep, that's about right...A single mother trying to juggle an obscene amount of emotional and physical stress.  She wants to move badly!  In the worst way!  The problem is, moving isn't going to magically make her happy.  She thinks we have too much stuff, clutter that is adding to her emotional load.

It was just frustrating.  I was frustrated but not at her; I kind of feel the same way.  So, at midnight, I went on a cleaning spree in my room.  I filled up two garbage bags of crap to throw out and two more garbage bags of stuff to give away.  Just stuff I don't care about.  Sounds like I'm a real messy person.  I'm not and I don't feel like a pack rat either.  In reality, we don't have much but today, we have even less of unimportant things.

Life is complicated.  If it isn't the one major health problem for the day, then it's all these little satellite issues that create just as much chaos and difficulty but it all comes from the same source welling up around us...uncertainty.  WE are all on this quest to find meaning and stability in a very unstable situation.




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.…