HEMICON 2016

We have just returned from Hemicon 2016, also known as the International Hemispherectomy Conference.  Toby, Angie and I traveled to Denver for what will be one of the most memorable trips of our lives.  This was Angie's first airplane trip and she was truly entertaining to watch and listen as we took off for the first time.  Her squeals were heard throughout the airplane and our fellow passengers could not help but smile.

As we planned to attend the conference, Toby and I were excited for Angie to meet other children who have had "her surgery" as she calls it.  We were not disappointed as she boldly approached others, peers and parents alike, and introduced herself the entire time we were there.  Soon after we arrived, we met Levon and his parents and the two kids were inseparable for 3 days straight.  Aren't they cute?

I prepared myself to feel emotional in the presence of the strong, courageous, ferocious parents whose children have overcome overwhelming odds.  And I did.  A few tears were shed as I realized something: We all knew the same thing.  Small accomplishments are actually huge victories and our kids can do anything they set their minds to.  We have all cheated death and have come out realizing how precious and valuable our children's lives are; something we do not forget in the midst of the battles we face on a regular basis.  I have found my people. Oh, and Angie caught Toby and I having fun and snapped this picture:

Many of the families have known each other for years but it did not matter.  They embraced us just the same and we became members of a club we never asked to join but now would not trade for a million dollars.  We shared stories of trials and victories and knew that we were understood.  Interestingly, though, we were not sad. There was a collective culture of gratitude, acceptance of our situation, and pure joy.  I have always recognized that Angie's resilience and acceptance of her condition are unique but now I wonder.........what is it that makes our children so brave?

For the first time, we met other families whose children are diagnosed with Sturge-Weber Syndrome.  All of the children were younger than Angie and were were grateful to be able to share her positive experience since surgery and her many accomplishments over the past five years.  We made connections that will last and hopefully grow over the years.  I can't wait to see their children thrive and grow like our Angie.

I came home with a long to-do list.  Therapies to research and schedule, new testing to arrange, and activities to explore.  I am thankful for the team who organized the conference and the top-notch presenters that attended.  Each one is a dedicated parent of a child with special needs who spent countless hours to plan and make sure our experience was the very best.  You are all my heroes and I cannot wait to attend again next year!