Monday, October 17, 2016

June didn't turn out as planned. Life can change in the blink of an eye.

I came to my blog, thinking "I haven't posted in a while!  I need to fix that!" Then I saw my last post and my heart sank.

You see, June turned out to be a very, very hard month for me.  Maybe it's time I posted about it here.

June 10th, I woke up early and flew to Pittsburgh, PA for the meet up that I would be speaking at for The Atypical HUS Foundation.

I got to my room and desperately needed a nap.  For once, I didn't check Facebook. Something just told me to sleep for a bit.  I wasn't sleeping long when my phone started ringing.  It was my Mom. She wanted to know if I had been on Facebook.  "No, no...I've been sleeping".

Jeff had passed away very early in the morning on June 10th. Before his wife had a chance to call me, it was posted on Facebook.  I'm so thankful that my Mom caught me before I saw the heartbreaking news on Facebook.

For those that don't know, my Mom was married to Jeff for about 10 years.  Jeff was my father figure for many years.  When Mom and Jeff were no longer married, Jeff still insisted that I was his daughter. Jeff moved away to Atlanta in my late teens. I visited there, he visited here. There were a few years were contact was very sparse. You see we both had addictions. We both put ourselves through so much.  There were times of hate.  But mostly, we loved each other as father/daughter.

Over the past year, Jeff and I had re-connected and had a strong relationship. We talked on the phone quite often....and for anyone that knows me or knew Jeff....those conversations were long winded. HAHAHA! A lot of my personality and sense of humor comes from Jeff.

On June 8th, Jeff and I had an hour plus conversation.  We caught up, shared with how we were both clean and sober, talked about life, and the future. Jeff told me how proud of me that he was that I was making a difference in this world. We talked about planning a trip this year for Ben and I to fly out to ATL so Jeff and MaryAnn could meet Ben finally.

On June 9th, Jeff went to work that evening as normal.  Very early in the morning on June 10th, Jeff suffered a massive heart attack at the age of 58 and passed away.

My heart shattered.  I lost a parent.

Next month, I am flying to ATL to spend Jeff's birthday with his wife MaryAnn. I can't wait to give her the biggest hug.  There will be tears, there will be laughter, and most of all...we have each other, just as Jeff would have wanted.

Wednesday, June 1, 2016

updates and pictures

It’s been a while since I have posted an update here.

We have had a lot going on.

In November 2015, we attended an Alexion aHUS luncheon in Dallas, TX.

In December 2015, I spoke at an aHUS meet-up in Phoenix. I shared my story with aHUS and represented The Atypical HUS Foundation. After the meet-up, Ben and I stayed in Phoenix for a few days to celebrate our 4th wedding anniversary. It was a great time!

The holidays were a bit sad this year without Grandma LaVerne there. It’s always hard to have those first holidays, birthdays, events...after the loss of someone you love.

In February, Mom and I made a quick weekend road trip to Louisiana to see family. It was so good to see them. Can't wait to go back!

In March, Ben got a new car!

In April, we traveled to South Dakota for Ben's cousins, Josh and Sherry's wedding reception.

In April, I spoke at a Carter Bloodcare event in Mesquite, TX at he Resistol Arena. This was by far the biggest crowd I have ever spoken in front of. It was very emotional for me. I was able to share my story with aHUS and thank the many donors that possibly helped to save my life. This event was for the top donors in 2015.

The weekend of May 20th, I traveled to Orlando, FL for an aHUS meet up. I shared my story and represented The Atypical HUS Foundation at this event. Orlando is BEAUTIFUL and the atmosphere is so happy there!!!

Hotel pool

Hotel pool

Hotel lobby from the floor I was on

Talking parrot in the hotel lobby

View from my hotel room

This weekend (June 3-6) is the very first conference that The Atypical HUS Foundation is putting on. It is in Nashville, TN. Ben and I will fly in on Friday, and meet up with my Dad. I’m so happy that my Dad is able to join us for this one! And, I can’t wait to meet some of the aHUS’ers that I haven’t met before.

Next weekend, (June 10-12) I am flying to Pittsburgh, PA to share my story and again, represent The Atypical HUS Foundation at a meet-up.

I am so honored that I have been given these opportunities to share my aHUS story and represent The Atypical HUS Foundation. It’s wonderful to meet other aHUS’ers and know that we aren’t alone.