How It All Got Started

I remember the night before I received my test results like it was yesterday.  I’d had several appointments over the span of several months in 2002 with geneticists, psychologists, and a long list of other medical professionals to find out if I had inherited Huntington’s disease.  The final step was a blood test and then an excruciating two week wait to find out the results of the coin toss.   That’s what I used to call it.  My odds were 50/50 and to a certain degree it did feel like my entire life was riding on the results of a coin toss.  Not exactly a good feeling, to say the least.

The time had come, however, to find out.  And I was ready.  I thought so anyway.  I already had myself convinced I was going to lose the coin toss so these test results would simply confirm what I already knew, right?  This is the responsible thing to do I remember telling myself repeatedly.  Having this information will help me make better decisions about my future, I thought.  I was trying so hard to be a grown up about it but the truth is I was scared to death.  I went to bed the night before those results and my heart was racing .  I laid there and prayed for what felt like an eternity.  I prayed. I begged. I pleaded.  PLEASE give me the strength I need to go through this with my head held high.  Please.  I never once prayed that I didn’t have it.  I think partly because I knew that answer had been determined before I was even born and partly because I was already that convinced that I had it. Then just before I fell asleep I made a promise.  I promised Mom.  I promised myself.  And I promised God.  That IF, by some crazy fluke, I *didn’t* inherit it I would make a difference.  A BIG difference.  I didn’t know how.  Or when.  Or what.  But I promised. The next morning I woke up with a sense of peace.  I wasn’t nervous anymore and I felt confident that I was ready to hear it.  My mom is living through it.  So can I.  I’ll be fine.  I can do this.  The doctors walked in the room.  There were two of them.  Their exact words were, “Well, Sarah, you will die one day.  But it won’t be from Huntington’s disease.  You did not inherit the gene.  I don’t remember anything after that.  I don’t remember what I said or what they said I just remember weeping.  The tears didn’t stop for days. I was so relieved (and shocked) that I nearly forgot about my promise. Fast forward to January of 2008. I was living in Louisiana and the nursing home called.  Mom wasn’t well at all. Pneumonia had set in.  They thought this time it may be the end and I needed to get home.  Fast.  So, I packed my suitcase and my daughters and I (ages 2 and 4 at the time) got on the earliest flight possible.  The three of us raced through airports all day calling constantly to get updates on mom and to let her know where we were.  When we finally landed in Kansas City I called yet again and her nurse told me she didn’t have long left.  Knowing we had nearly 3 hours left to drive to get to Iowa my heart sank thinking I wasn’t going to make it in time.  Her nurse said, “She’s waiting for you Sarah.  Drive carefully.  She’ll wait.” When I finally got to the nursing home it was nearly 9 pm.  Mom had been up for over 24 hours.  Everyone else had been there with her all day and were exhausted so they went home to get some rest.  I crawled in bed with mom and snuggled up with her.  I was playing with her hair and tickling her arm as I talked to her.  She used to do that to me when I was a little girl.  Then I took her face in my hands and looked her in the eyes and told her it was safe to sleep now.  I said,  “I’m here now, Mom.  Everyone is here now.  You don’t have to stay awake anymore.  I’ll be right here beside you all night.  You’ll never be alone.  I promise.”  That was the last thing I said as she took her last breath in my arms.

And that’s when I remembered my first promise.

After mom’s passing my promise haunted me. I had a lot of guilt about not having inherited the disease.  Why did she have to have it and not me?  It seemed so unfair.  If I could have traded places with her I would have without a second thought.  I also had a lot of guilt about not having done anything to make a difference when she was alive.  I had wanted to do something to make her proud, something to show her how much I cared and now I’d missed my chance.  She didn’t know about my promise, but I did.  And I couldn’t get it out of my mind.  I was devastated on so many levels.

As time passed and I went through more of  the mourning process my attitude slowly started to change.  It’s not too late.  It’s never too late.  I can still make a difference.  I can still keep my promise.  I can still show mom and God and my family and the whole world for that matter just how much I care and that’s just what I’m going to do.  But how?  I still wasn’t sure.  Then I got dared. It started as a simple Facebook status.  I posted, “One day I really want to ride in RAGBRAI.”  The legendary bike ride across Iowa fell on the same week/weekend of my 15 year High School reunion that year.  The next thing I knew I was being dared to ride in RAGBRAI and ride my bike directly into my class reunion wearing my bike helmet and spandex bike shorts.  My friend, Alicia, said, “I’d pay to see that.”  My mind immediately started racing.  “Really?!  How much?”,  I asked.  The conversation went back and forth throughout the course of a day and more and more people jumped on board saying they would donate if I’d do it.  “Keep the dares coming”, I said.  “I’ll do it.  But I don’t need RAGBRAI.  I’ll start my own bike ride.  Who’s in?”  I said.

And Bar-2-Barbara was born.

That was day one. Click here for a video that explains how far we’ve come.