Wednesday, November 26, 2014

My mom and dad

My mom and dad are awesome.  I know I've said this before.  But they deserve extra special mention.

This whole ALS thing is an extraordinary situation.  It's put us all in places we'd never thought we'd be.  Emotionally, financially, where we live, how we live!

If I back up a little, pre ALS, even pre Luther, my parents have always been pretty great.  They're all about family.  They lead their life by example.  They are true and honest, hard working and moral.  They are thoughtful, funny, patient and really really kind.

They are there for all us kids, usually no questions asked.  Maybe a few!  But generally no judgement.  For me, I've made some questionable choices and always, my parents have always been there to support me... not necessarily the choice, but to support moving me forward.

Fast forward to now.  To this terminal diagnosis.  It's created all kinds of situations we weren't prepared for.

We will be moving in with my mom and dad at some point in time.   It should've been by now.  We have a VA grant to get their house wheelchair accessible but moving through the grant process has been super snail like.  Part of it has been mis-communication between me and Luther, us and our grant advisor, my parents and the contractor, us not signing something correctly, etc etc etc   The grant process started in June.  Maybe earlier.  6 months later, the work hasn't even started.

My parents have ripped up their carpet, moved furniture, peeled wallpaper in order to get the process rolling.  And it's still not rolling...

Did I mention my parents are patient??  This was supposed to be interim housing.  Done by now, we'd go south for the winter, come back and live with mom and dad while we re-group, have the time to look for a new place, figure out what to do with my old place.  We're all adjusting.  I can only imagine their frustration and yet, we're all learning to accept the idea that this is what it is... we can only deal with and control what's in front of us.

Luther owns a mile-long RV.  It's still in Virginia.  A part of his past.  Sadly, a part of our future since there are payments still to be made.  My mom, in her zest for thinking outside the box, wondered if she contacted Ellen about our story, if Ellen would take the RV off our hands and use it to pass on to someone else?  Or as a celebrity dressing room??

Which got me to thinking about the Ellen show and how she honors every day people who do extraordinary things.

I sent in the following to the Ellen show, hoping I could get my parents in the audience or something like that.  You only have 1500 words to convince someone at the Ellen show they need to recognize someone!!   To date, I haven't heard anything.   So here's my own little tribute to my mom and dad.  I want to recognize how much I appreciate their support.  How much I love them.  How proud I am they are my parents.

Hi!  I'm Lynn.Thank you for highlighting the faces of ALS.  Your spotlight on this terrible illness is great!  

My guy, Luther, was diagnosed last November. We met a little over 2 years ago and jumped in feet first, thinking we'd have the rest of our lives to keep falling in love. A year after meeting, Luther got sick. It took almost 9 more months of testing to finally get the diagnoses. The "rest of our lives" took on a whole new meaning. 

But this isn't my story. Or Luther's. Instead, I'm writing about my mom and dad. Married 53 years, they are amazing. Every day, they show us what strength of character and unconditional love means. 

Luther and I can't stay in our house; it isn't feasible to make it accessible. So, at 53, I am moving back in with my parents. They are tearing up their home and my dad is giving up his man cave so we have an accessible place to live.

My mom loves your show!  She called with this zany idea I should contact you to see if you wanted this monstrous RV I inherited via marriage. Her words: "Ellen could use it for a blood drive or a celebrity dressing room!"  

That's not why I'm writing, but it got me to there a cool Ellen kind of way to acknowledge my parents? 

I've told them a million times how lucky I am, how grateful we are. This illness is devastating and sad but time after time, my parents step up and keep us moving forward. It would mean the world to be able tell the world about my quiet heroes who expect nothing and deserve so much. 

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