God grant me the patience

I have been told through this journey how strong I am.    It’s not like being with or caring for Joe is something I could walk away from.   In fact it’s easier then being in my 20s, married, moving to Shrewsbury and then having a baby girl.  

  I was lonely and not connected to anyone.    My family lived in New York three hours away.    Two weeks after Liz was born I watched Joe take my mom to the train station and then go to a 12 hour work shift.    I looked at the bundle in my arms and had absolutely no idea what I was supposed to do with her.    I felt underwater and had no idea how to swim.   

For years i signed up for playgroups and book clubs.   I longed for friends, for connections.    I couldn’t seem to find them.   I just didn’t seem to be able to connect to many.    Liz and I were constant companions. We went on “adventures” together.    We would go and get a bagel and share it while we talked or read a story.   We would go to the lake and spend the entire day swimming, building sand castles and feeding the ducks. The days Joe was home were the best.   I had a connection.  I was whole.    

After Joe was diagnosed, I was seeing a  therapist.   She told me that since Joe and I had started dating so young and been married young we had essentially grown up together.   Now for the first time, I was moving forward and he was not.   

I did eventually find my friends.   I got busier as I had two more children and eventually started working again.   But that time in my life was very challenging.   Now I have the support of so many people and that makes this part of my journey easier.   As I have told my kids, this is our now but not our forever.    This part of our journey must be taken with love, support and courage.   There is a community behind us and your support gives us the ability to take the next step.