Thursday, October 21, 2010

This week.

I’ve ben MIA for two weeks, I know.  The trip to NYC was amazing – great food, great weather.  I gained four lbs.  It was totally worth it.

This week though – not great.  Monday AM I found out about the passing of Mel’s dad.  I know how much pain she’s in – because I too have essentially lost my father at a young age.  

I had a whole blog post written in my head about my dad, his illness, and how I’ve attempted to cope and mourn and grieve over these last 8 years.  But then, I got That Call on Monday afternoon.  Dad had a massive seizure on Saturday, and you’d better come quick.

It’s not the first time I’ve received That Call.  But each time sucks just as much as the first. 
My dad is sick with MELAS (Mitochondrial myopathy–encephalopathy–lactic acidosis–stroke syndrome).  It’s an extremely rare genetic condition that triggers an auto-immune response in the body.  He has nearly all of the symptoms, including the more rare – Strokes, stroke like episodes, seizures, hearing loss, shortness of stature, dementia.  The one rare thing is that most people are diagnosed & ill by the time they are in their teens.  My dad is one of the rare cases who wasn’t diagnosed until his late 40’s and is alive in his 50’s. 

Things have been relatively steady in my dad’s life since early summer (the last time I got The Call).  He’s in a home healthcare facility, supported by lovely women who feed him well.  Hospice comes in once a week, along with other supporting systems.  We live about an hour away, and I make the drive down to see him on most Saturday mornings.  He’s mostly bed-ridden, and can’t speak or understand much, but recognizes me and knew I was there.  

There’s something to be said about how much you change when you lose a parent.  For me – I lost my dad, the one I grew up with – 5 years ago.  The strokes and seizures have altered him mentally & physically to a degree that has removed almost all but the essential parts of living (breathing, eating).   

Yes, he’s still playful and sticks his tongue out at me – but his perception of the world is altered.   The more I compared this ‘new’ dad to the old one, the more I cried.  I got angrier.  And I realized that this man isn’t my old dad.  Yeah, he’s still my dad, but I needed to grieve the loss of my old dad.  The one who woke me up in the morning by cracking my toes and taught me how to properly load & unload a boat.

I mourned.  I cried, I wailed, I wrote letters.  I gave up on the fact dad will never see me married, never walk me down the aisle, never be there again for me in a fatherly role.  I'm closer to being healed.  I'll never be fully healed from this experience.

But now, today.  We’re left wondering what’s next.  Hospice is worried about dad – he hasn’t had food, water, or his regular meds in 6 days.  He’s refusing water.  Is this the end?  Is he done?  Has he made that conscious decision? We don’t know.  We haven't had a firm answer about anything for eight years.

My stepmom called last night with an update.  I was on the treadmill, and kept walking while she talked.  After she finished, I ran.  

 I ran and ran and ran and kept going.  I wasn’t crying.  I wasn’t angry.  I just wanted to know SOMETHING.  Anything at all.  So I ran.  And I made my own answers.  Set little distance goals.  I didn't want to stop, because I finally had control for a few moments of my day - even if it was just on the treadmill.


  1. Oh, Chelsea, what a tough thing to deal with. Hugs to you, I hope things work out for the best with your dad.

  2. Chelsea, I'm so sorry you have been going through this for so many years. I hope you find some resolution or maybe just some peace soon but that things are better for your dad.
    I thought I'd distract you with a Versatile Blogger Award. Details in my latest post.

  3. Chelsea, I had no idea you were going through all this. Then, obviously, tonight I saw your FB and Twitter updates. Thoughts and prayers with you and your family.

  4. Thank you for sharing with all of us.. I cannot imagine the pain of watching you Dad slowly slip away. God Bless you and your heart.Thank you for the letter :)