2012 Aicardi Syndrome Family Conference!

We just got home from a fabulous week in St. Louis to attend the Aicardi Syndrome Family Conference!  We look forward to these conferences with more anticipation than we have at Christmas time!  For several days we get to be surrounded by dear friends who live in our world of Aicardi Syndrome.  For several days, monitors and pumps beep without anyone thinking about it, and seizures happen without any strange looks. Nobody stares at us, because we are all the same there. We are surrounded by wheelchairs and friends who give complete love and acceptance.  It truly feels like going home when we are surrounded by all our dear Aicardi friends.  This conference was wonderful--every part of it--except for the fact that it had to eventually end.

We started our trip by going to the St. Louis Zoo with several of our Aicardi friends on Thursday.  We are usually aware of people staring at us in public when they see Annie, but walking through a zoo surrounded by 20 or more girls in wheelchairs just felt perfectly normal and we forgot about all the stares we must have received!

At the sea lion tank--Molly and Lexie traced their fingers along the glass and the sea lion followed their every move!

After being out in 105 degree weather, we cooled off in the 40 degree penguin building!  It was pretty neat to get right up close to them.

 

Justin crashed after being at the zoo all day, and Molly quickly grew tired of waiting for him to go swimming!

Our conference officially began on Friday.  It's a wonderful feeling to be in a conference hall surrounded by Aicardi families!

Group photo of nearly all the girls with Aicardi Syndrome in attendance--about 80!  Click on photo to make it bigger.

My dear friends Carrie and Debi with their daughters Macey and Azaria.  We joined the "Aicardi Club" all around the same time and it's been wonderful having such close friends with girls the same age as Annie.

Dr. Justin Tolman presenting a lecture at the conference on seizure drugs.  His session is always well attended and he does a fabulous job!

This 2012 conference was a bit different for me from conferences in the past.  For this conference I served on the conference planning committee, working for two years to help organize this conference.  It was such a wonderful opportunity to serve on the committee and give back a little to this organization that has changed our lives.  It was wonderful being in such close contact with other members of the committee, oftentimes on the phone with conference calls for hours, or emailing each other several times a day.  I loved this close contact with Aicardi friends and the chance I had to help contribute to the conference.  We had an amazing committee this year and I loved working with them all!  It was great to be in a position to more easily meet all the newly diagnosed families, and help lead some discussions for some breakout sessions, although when I had to fill in for the orthopedist that ended up cancelling last minute, I felt far less than adequate to lead such a session.  Fortunately there were wonderful parents in there who have more experience with orthopedic surgeries than I do that helped me with that class.

2012 Aicardi Conference Planning Committee

On Sunday we were able to walk across the street from our hotel to visit the St. Louis Gateway Arch with a large group of our Aicardi friends.  Unfortunately, the older girls, including Annie couldn't comfortably ride up in the pods to the top of the arch without their wheelchairs--it's definitely not ADA compliant.  But I took Molly and Lexie and rode up in a 5 seat pod with 2 other Aicardi friends and each of their 4 year old girls.  When we got out of the pod at the top, one man watched us filing out of the pod like clowns in a little car and asked, "How many?!"  It was a fun experience, but Molly and Lexie weren't quite sure about being crammed in the tiny pod and riding up so high!

Brooke and Nicole with their Aicardi daughters Madeline and Cece, riding in the pod.

At the top of the St. Louis Gateway Arch.  Molly wasn't thrilled with being up so high!

Lexie looking out the window at the top of the St. Louis Arch

View from the Gateway Arch

St. Louis Gateway Arch

  We had a fabulous trip to see our Aicardi family and we're so grateful for my mom who helped me drive the kids to St. Louis while Justin was away.  She helped us a lot at the conference too, giving us the opportunity to stay up extra late laughing and having fun with our friends in the hotel lobby each night.  We had a great time and already miss all our friends.  July 2014 won't come soon enough!

To see more pictures from the conference, click here to see my Facebook Album.