Chapter 5, Sunday

I was in total grill mode.  I went to the store and picked up the usually Sunday meal for the grill, hamburger, hotdogs, store made sides.  Just making it look easy and taste good, not great, but good.  Our guests were arriving, only three families and Dr. Koolen.  We had work to do.  My plan was to enjoy our afternoon and then have a Board Meeting with members of SFKDVS including Dr. Koolen.  We discussed many different topics which seemed extremely beneficial to the Organization.  We actually became lost in our meeting and I was rushing Dr. Koolen out the door to get to the airport. 

It was a very short and sweet goodbye. 

Where do we go next, what have I learned, what was 'the' moment? These internal questions haunted me while the weekend was happening.  While I am writing this, I am realizing the answers. 

I would like to see Eva continue with all the early interventions possible.  I was very impressed with two girls at the Gathering.  I would like to see Eva in their shoes.  

I learned that there are so many families have parallel lives, whether we want to live them or not.  I also learned that these families will be completely opened armed within each other.  We all maybe completely different people and have extremely different personalities but we are all one.

'The' moment I had was on Monday.  I was explaining to my neighbor what an experience I had and how I had planned all of the families to enjoy their C17 families.  That is when that moment happened.  Because this is a passion, it is a profound love that can not be broken, I will always have a deep connection with KDVS, C17, and all the families.  I know that I am a better person because my Eva has KDVS.  I see others differently.  I am more empathetic towards struggling families.  I notice imperfections more on those I don't know.  I want to be able to give more to others that can not obtain for themselves.  I want to make the public known that rare syndromes are out there.  I especially want teachers to realize that not all children have ADD, ADHD, or are just slow.  There are so many children in our world that are misdiagnosed, undiagnosed, or just pushed to the side.  I would like to see those children get the treatment that they deserve.  I would love to see their parents become their voice, their advocate and get them what they rightfully deserve.  But, as for now, without this random runoff thought, I will do what I can for Eva.  I will do what I can for Abigail, Elizabeth, Victoria and Scott.   But my passion will remain the same.  I will continue to fight for all of our children. 
All in all, the Gathering had its minor imperfections but it was amazing.  My family will always remember their special moments of meeting new friends, swimming, being hot, and having a new t-shirt bringing those memories back.  We look forward to our next Gathering, without us hosting :)...