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Ben’s Story

Welcome to our CaringBridge website. We've created it to keep friends and family updated.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.  We treasure each and everyone of you and your support!

After experiencing some wrist and hand weakness during the summer of 2011, I decided to go to the doctor with what I thought was carpel tunnel.  At the initial visit the doctor couldn't decide whether or not to send me to an orthopedic specialist or a neurologist.  After spending about 10 minutes with the orthopedic doctor, she sent me to the neurologist who spent a lot of time looking at my nerves and muscles.  I spent the next six weeks having tests, including EMG's and MRI's, and on October 24, 2011 was given the diagnoses of ALS or Lou Gehrig's disease. 

For the last 5 - 6 months, I have been seeing a doctor at Washington University in St. Louis for a second opinion.  I've under gone a variety of additional tests, and in April 2012 the diagnosis was confirmed.

Becca and I have been pretty guarded about this information because we hadn't told the boys (we'd been advised not to say anything until the "official" second-opinion diagnosis).  Now that we have had a conversation with them, we are comfortable talking about it in the open.  For those of you who don't know much about the condition (and we certainly didn't prior to the diagnosis), there is no real time line for how it progresses.  Every person is different.  We'd like to stress that if you have questions, come and talk with us.  We are not uncomfortable taking about it.   Although typical to our relationship we are dealing with this through our sense of humor, so you may have to deal with some of my bad jokes.

So for now we are taking things one day at a time, getting things in order and spending quality time together.  Becca or I will post updates periodically and we look forward to your messages.   

Latest Journal Update

Hugs

Hello family and friends-

We made it through one of the many firsts since Ben's passing, his birthday was this past week.  It was a somber day and one that made us miss Ben even more than we already are.  I'm not going to lie, this has been even harder than we could have imagined.  The boys and I are trying to figure out what our new normal is and that hasn't been easy.    

Liam being out of school for five weeks with mono and Eli an active teenager keeps me pretty busy, but learning to set limits and boundaries is helping.  I know some of you wonder where we have been. Honestly, some things are just too hard right now.  Doing things that we used to do as a family reminds us that Ben isn't here.  Right now we are avoiding it, but with time we will get there and will enjoy those times again.  The boys and I make every decision together and if one of us isn't comfortable doing something, then we don't do it.  

I'm not writing this to ask for your pity or sympathy, rather I want you to understand.  We need time and space to grieve and heal.  Everyone does this in their own way.  The boys and I continue to work through this with counselors.  Please be patient with us.  

Hug those kids,
Rebecca