Sunday, February 8, 2015

Are you familiar with Italian Attitude?

 No we don't.

Do you know a feisty Italian? Have you experienced this? It's ATTITUDE.  My Nunnie (my Italian grandmother) defined this.  I love my Nunnie with all my heart but dear God, she was sassy.  She pulled it off well.  She didn't put up with shit but she was classy and graceful.  

I did not inherit this trait.  In all honesty, I wish I had.  I'm over-emotional and super sappy.  Sounds lovely except for this particular breed of folk puts up with way too much.  I forgive easily and give too much.  But that's just who I am.  

My sister, however, DID inherit the feisty Italian trait.  Lord did she ever.  Along with a sailors mouth to go with it which I quickly picked up on (and THIS is why I was cussing in preschool, mom).  Currently, Heidi is not able to walk without a walker.  Of course it bums me out to see my sister having to use a walker but let me tell you, she's hauling ass with that thing.  Before Nate and I moved into our new home, I was living in Heidi's basement.  One night we were watching TV in the basement and Nate pointed out something.  We could hear walking from upstairs (as we always could) and he said to me "even though she's using a walker now, she's really getting around".  She does.  She has made the best of the situation and has gotten comfortable with using a walker.  

My mom usually takes Heidi to the grocery store but on Friday I joined them along with Jayden.  I was surprised to see how well she did using a grocery cart.  She leaves the walker in the car and uses the grocery cart for support.  I walked beside her or behind just in case she slipped.  When she had to make a sharp turn and the cart was more full of stuff I asked her if she needed help.  Nope.  She didn't need my help.  She's not steady but her innate stubbornness and her feisty Italian attitude keeps her strong.  Mentally AND physically. It's admirable and it makes me proud to be her sister.

And there's never a shortage of snarky comments.  "They're always trying to sell you more" she says to me as the deli boy asked if we are sure 1/2 lb of provolone is all we need.  LOL.  Keep the snarky comments coming, sis.  :)


(okay okay I have a TEENY bit of this in me)

Friday, February 6, 2015

The Answer We Never Wanted to Hear

By far the past 2 weeks have been the most stressful and emotional in my life. 

After many YEARS of watching my sister's health decline, we finally have an answer.  We have a diagnosis.  

Nothing would have prepared my family and I for the diagnosis.  

Chorea-acanthocytosis.  Chorea whatahhh?  My thoughts exactly.  2 weeks ago we got the tentative diagnosis and of course I went to the internet immediately for answers.  The answers hit me like a kick in the shin (always a soccer girl at heart).  As I quickly read the articles I pick up on key phrases that made my heart ache.  And they still do.  "No treatment". "No cure".   

To say that I've been emotional is probably the biggest understatement of the year (and it's only February).  How is this happening to my sister? To my family?  There are around 500 cases of this IN THE WORLD.  There are roughly 7,200,000,000 people in the world.  500 of them have this rare genetic disease.  I still can't wrap my head around that. 

For the past  2 weeks I've been selfishly wondering if I would inherit this disease.  After all my odds of getting this is the exact same as my sisters, 1 in 4.  I spent the last 2 weeks scared to death.  I have never felt so much anxiety.  And at the same time I felt shame.  How could I be thinking about myself right now?  I guess it was fear.  

Yesterday my mom had a phone call with a doctor that specializes in Chorea-acanthocytosis.  She confirmed the diagnosis over the phone.  I had talked myself out of believing this is what it was for the last 2 weeks and now I have to accept it.  I have never felt sadness like this before.  Sometimes it doesn't seem real.  

My mom asked the doctor about other members of the family since this is a genetic disease.  The doctor assured my mom that if I am perfectly healthy right now that there is nothing for me to worry about.  And Jayden will be fine as well. I feel a small sliver of relief.  But that is immediately smothered with the shock of the confirmed diagnosis.

Right now it's an internal battle.  I am overwhelmed with sadness and at the same time I'm telling myself to keep it together and enjoy the time we have with Heidi.  

Last saturday was my dad's 60th birthday.  Happy Birthday Vinny (you old man hehe)!  The entire family went to the WVU vs. Texas Tech basketball game in Morgantown.  We all had a great time.  Kevin and Nate took some great pictures of the family.  This is one of my favorites:

I'm sad. I'm mad. I'm confused. 
I'm a mess inside.  
But we will carry on as we always do and live in the moment.  What we have right now is the present.  The future is uncertain.  

For now I'll continue to ramble on to whomever wants to read my blogs.  You are my therapy.  
(You can bill me later). ;)