Freedom comes and freedom goes

There have been so many lessons learned during this pandemic.  What the world is collectively experiencing, is where we dwell on any given day. One of those lessons is the perceived freedom and agency we have.  This country was built on freedom and agency and many of the cultures and organizations we invest in, offer the promise of freedom and agency.

Dyskeratosis Congenita, Epilepsy, TREX1, bone marrow failure...all the things have altered how we view freedom and assert our agency and often those choices come with a price to be paid.  Even more often, the rest of the world is quick to judge.  

I have been observing how the world is changing, people are changing; divided. Anger is abundant and fear runs rampant.  Many of us will never know the freedoms we once had.  

But...this is not a post about the pandemic or the global state of this broken world. 

I have some personal choices to make in the coming days as life begins to open up.  Church will eventually return and all the things.  Those choices we are facing as a family will not be easy ones to make.  But harder than the personal choices will be the judgment and questioning from the onlookers.  It makes me a little nervous.  

The bigger problem I have at hand is my dear sweet Shelbie.   I've been letting her do some driving the past few months.  He epilepsy seemed very well controlled and she was always honest about how her head 'felt' before I let her drive.  Sometimes, she would ask for a ride somewhere because her brain felt 'tired'.  That's how we've been working through getting her some freedom and independence back.  

This week, something happened.  Sunday, she told me she felt like something was happening to her.  She slept a lot.  Then she started struggling to find words. For example, Monday, she went out to our friend's place in Hibbard to do the girls' nails.  (Shelbie does Gel Nails for people on the side...mostly her friends)  I was swamped and had to stay home that evening to meet some work deadlines so she took the car and went by herself.  She told me she had a hard time finding words all night and when she left, she said some things that were completely irrelevant...like "Well, make sure you put on a fashion show tomorrow."   She knew she said it but there was no context to it and she knew that too but she couldn't stop the words from coming out.  When she got home, she was really upset because she didn't know what was  happening to her head. 

I never put it together that she was starting to have seizures again.   All week, she's been extra tired, tripping and falling.  Last night, her legs completely gave out on her and she fell down a couple of stairs.  About 30 minutes after that, she went into the most horrifying neurological event!  It was after 11 pm and at first we managed but then it really did get scary.  Even the boys were in shock watching her.  She couldn't make any sense in her words and she knew she wasn't making sense but kept trying to form words and sentences and she was laughing and crying hysterically at the same time.  It was like watching the scaffolding that holds the brain together, just crumble.  Completely crumble.   She had no real working memory for short term things.  

I finally got her down to her room and Spencer slept on the couch in case she needed someone.  I was very grateful he was willing to do that.  

Today, I have to deliver the very bad news that she can no longer drive again and for the next couple of weeks she really can't be alone and that really breaks my heart to have to tell her this. 

It's just so sad and I've never seen anything like this before.  I spent the next two hours, well into the night trying to figure out if this was a seizure or a stroke.  I'm not sure what to do.  Telemed won't help.  I've considered taking her in for a D-Dimer test to see if she did have a stroke.  I'm just not sure. 

So, the moral of this story is...freedom and agency and relative.  Life happens and neither of those things we think we are entitled to are promised.   In the end, it's life that sometimes gets to determine our freedoms.