Disney World 2017

Okay, so let's talk about Disney World.  Yes, we did go to Disney during one of the hottest and busiest months of the year and we survived.We truly had the best time ever during our time there but I have to be honest and say that experiencing Disney with children who have special needs is HARD.  All of the things that are hard for the rest of us-the heat, the lines, rude people.  Did I mention the lines?   All of that is even harder for them.

We rented a special needs stroller for Miss Angela and that was the best planning decision of the whole trip.  She never could have done the trip on foot.  We found a great company that delivered the stroller and picked it up on the day that we left.

On the first day, we were given a Disability Access Pass for Angela.  We were impressed at how easy it was to use the pass on the rides that she rode.  They never split our group of eight and we were able to all ride together.  The stroller was identified as a wheelchair and the staff had it ready at the end of the ride each time.  Our girl was truly treated as a princess and the Disney cast called her Princess throughout the trip.  I am sure it was in their training, but it really made her feel special.  And then, one of them handed her this note:

Splash Mountain, Space Mountain, Thunder Mountain.....she loved them all.  Such a crazy daredevil!  It was so fun to have our kids together in one place, along with our grandson, Ezra.  There is nothing better than to witness your kids' love and devotion to each other and this was us.  I am bragging but we really have a great bunch of kids.

I was a little bit sad when we returned home and some of the kids went back to their homes. Even now, I miss them.  So much fun!  I will leave you few more pictures:

HEMICON 2017

     I don't want to let too much time pass before I share about our trip to Orlando for the 2017 Pediatric Epilepsy Surgery Conference and Family Reunion.  Not that I could forget a single moment of it. You see, this is the one time each year that we are together with people who understand EXACTLY what Life After a Miracle truly is.  They are living it too.

     Angela could not wait to get to Orlando to see her special friend, Levon.  This is what their reunion looked like:

It was so good to see the two of them together.  Levon underwent a Right Hemispherectomy and Angie's surgery was a Left Hemispherectomy so we joke that they are a matched set.  They have a unique friendship and it warms my heart to know she has friends who truly get her.  We were all pretty excited to get to the conference and see this too:

 The kids loved watching other families take photos in front of their poster.  We felt honored that Angela's picture was on the poster this year.  The conference sessions were "top notch"-to borrow one of Angela's favorite phrases- and I gained a lot of new knowledge.  I can't fit it all in here but one of the things I did not know is that children lose some function on their "good" side after hemispherectomy surgery.  I had no idea!  That fact came from my friend Monika, who is brilliant and who led the Brain 101 session.  I also learned volumes about IEPs and writing ambitious goals.  Oh dear, give this girl a little more knowledge and she might become dangerous!

The conference ended with a wonderful Pirate Party, complete with disco dancing.  Yep. This 80's girl was in her element.  We had so much fun!!

 It was hard for Angela to say "See You Soon" to her friend Levon, and new friend, Lola whom we had the pleasure of meeting this year.  The three were pretty inseparable the entire time and they had loads of fun.

Throughout the conference, Toby and I repeatedly told each other how grateful we are for the work of the Brain Recovery Project.  I cannot say it enough.  The BRP provides advocacy, resources, and research to families whose children have experienced brain surgery for the treatment of epilepsy.  They work tirelessly while caring for their own children and attending the endless appointments that are the result of our children's circumstances.  We would be floundering without this work.

We ended our time in Orlando with a trip to Disney World but that will have to be saved for another day soon.