Skip to main content

The Continuing Saga

Lots of people ask me about my friend May.  She has been in jail and the State Hospital for months, nearly 5 months!  Two weeks or so ago, she was transferred back to jail.  Yesterday, she was released which his really great news!  Talk about gaining your independence.  That's all she really wants in life.

The sad part is, she completely forgot me.  In two weeks.  That made me pretty sad.  I saw her this morning on one of the major roads through town.  She was riding her tricycle.  I stopped and met her on the sidewalk.  She had no clue who I was.  After about 10 minutes into our visit, it clicked.  She even said, "OH!  Kath, my angel.  I didn't even know who you were.  You just unlocked a part of my brain!"  And then, it was like my old friend again.

She has nowhere to live which sounds obvious since she's been homeless most of her adult life but she doesn't even have a car!  I found out she hasn't had a driver's license in over a decade which is what got her into all this mess in the first place.  I am hoping she will contact me tomorrow so I can take her to the DMV and try to get a license.  She thinks they will let her take the written part.  If that is the case and she passes, then I will try to find her a $500 car.  I know there are many who think I shouldn't be enabling her like that but honestly, she is an 86 year old woman who knows what she wants.  It sounds like a horrible situation to most people and wrong on so many levels to allow an elderly soul to be living in a $500 car but that is honestly what makes her happy and I have always known her to be a happy person.  So...why not?  Why make her conform to what the rest of us think her life should look like?


We had a decent 4th of July.  Spence and I went  to the parade to watch Sam do his thing with Gravity Factory.  I was really concerned about him so instead of getting decent pictures, I got lame ones.  He's been blacking out the past couple of weeks and very dizzy.  With the mid-90 temps on parade day, doing Parkour stunts all the way down the parade route and his 39 bpm heart rate, it seemed like a disaster waiting to happen.  But...he did alright.  With his Chiari's brain malformation, parkour alone is a big risky adventure but my kids will not be had by this disease and watch life from the curb...like I tend to do.


                                               
I did catch a perfect landing!

After the parade, the kids went with some friends to another small town to catch their festivities.  I went home and made chocolate custard ice cream- it was like dying and going to heaven without the committment!!  A few salads, Texas sheet cake, Raspberry cheesecake and food for a BBQ.  The boys had their girls who are friends over and their cousins.  A great time was had by all.

I rarely have the kids for 4th of July.  It's become a family myth that I hate the holiday...I don't hate it actually.  In fact, I have been known to wax a little poetic on Independence Day.   After dinner, we went to the city for an amazing firework display.  31 minutes!  We sat in a sea of people and it took us 2 1/2 hours to get home but it's always worth the trouble.

All in all, it was a nice day.  Spencer is still barely able to walk on his feet due to some strange complication with our winning disease.  Spencer has had two episodes where his heart rate didn't register on the recorder.  I'm really hoping that is a technical issue with the loop recorder and not a reality.  I did hear from Sam that Spencer had two bad events when they were together last week and he had to push the button to record the event.  Even Sam was a little worried.

 Shelbie texted me from California and her leg looks horrible.  I'm still not convinced that she doesn't have congestive heart failure symptoms starting.  I really wanted her to try and change her flights and come home but after talking about it I decided to let her stay.  You only live once right?  She's got a compression wrap on it and is keeping it elevated as much as possible.  It has doubled in size despite our best efforts.  She flies home on Sunday and I will assess the situation then and make a plan.

So, our Saga continues.
Photobucket

Comments

Popular posts from this blog

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.…

Obscure Sorrows

I sat on the bench like I usually do on Saturday mornings, the organ music was slow and quiet.  I think that's why I like playing there; its just slow and quiet.  I set the pace.  I mostly keep my eye on the music for fear of messing up but I did notice a couple walk in.  I had known them a few years ago, not well, but enough.  Enough to notice each other and say Hi.  I had heard recently that she had breast cancer.  She's likely a good 10 years younger than me.  Her red wig was striking, her eyebrows carefully in place and by all accounts, she made cancer look good.  
I had the strangest feeling I've never had before.  She has no idea, that somehow, I know all about her recent strife with cancer.  I have heard how it struck, how she deals; I know more than a distant acquaintance like me should know.   She is living this complicated, unfair, story that went off in a way she scarcely expected.  For a moment, I felt like I was an extra in her 3rd act; the struggle.  And, I wo…

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…