2014 Aicardi Syndrome Family Conference in Chicago

There's just so much to possibly say about our Aicardi Syndrome Family Conference!  This was our sixth conference to attend--not missing a single one since Annie was born.  And it was my second conference to help run, serving again on the Conference Planning Committee.  But before we got to the actual conference, we spent some time checking out Chicago...

Everyone traveled well for the 8 hour drive.  Justin worked on editing a student's thesis, while I drove.  My mom also came along with us since Justin had to leave Chicago early to get to a pharmacy conference for work.

Of course we had to stop at the American Girl Doll store!  Fortunately, I've raised my girls to know what's a good price and what isn't! They loved looking at all the cute gadgets and accessories, but they knew Justin could build, or I could sew, something for much cheaper!

The doll bed Molly wants Justin to build

 

We went to the Lincoln Park Zoo in Chicago. We were excited to hear that it was free, but discouraged that parking was $20 an hour!!  Fortunately, I snagged a handicap parking spot on the street by the entrance for free!!

Annie always loves the gorillas.

 

Molly rested well after a long day.

Now for the conference...  I just can't fully explain how wonderful it is to go to these conferences.  It is like coming home in every sense of the word.  At no other time in our lives are we surrounded by people who live in our world and face the same challenges and joys that we do.  Our Aicardi friends are some of the dearest friends we have and we always look forward to getting to see them all every two years. 

The conferences hold such a feeling of love and acceptance and joy.  Many first-time attending families are overwhelmed by the range of abilities and medical needs of the Aicardi girls.  It can be difficult to be thrown into such a group that you didn't sign up for, but families quickly learn that we are not a sad group or a group to be pitied.  As one friend told me, the biggest thing she learned by attending her first conference was that people can continue to be happy!  She was surprised at what a happy group of people we are!  That is one reason I love serving on the committee--I've been able to interact with a lot of newly-diagnosed families, to help and encourage them.  It's so rewarding to learn how these conferences change people's lives and know that I got to be a part of providing that for them.  I could go on and on about how wonderful these conferences are, but on to some pictures...

These are the wonderful women I got to serve with on the planning committee.  The name tag represents Kim who couldn't be there for the picture.  I count these women as some of my dearest friends.  It was such a joy to have such close contact with them the last two years as we worked to plan this conference.

There are only a small handful of Aicardi families that are also Mormon like us.  This is my good friend Brittany who is one of those fellow Mormon Aicardi moms.  I talked her into serving on my agenda committee for this conference and it's been wonderful to work with her!  And now she is moving up to be a chair for the 2016 conference, so I'm excited to work on another conference with her too.  In this picture we are at the registration desk, getting families registered as they arrive at the conference.  It's wonderful to get to talk to everyone as they come through and share many hugs!

Our conference had about 90 families in attendance--just over 400 people.

 

Giving some opening remarks at the start of the conference.

This was the theme for this year's conference.  These cute plaques were given to our professional speakers who donated their time to come speak to our group. The sessions at the conference are mostly taught by experienced parents in our group, however, we also book several professionals such as a gastroenterologist, orthopedist, neurologist, adolescent gynecologist, behavioral therapist, and other doctors and specialists. (That's part of my job--to help find and book these specialists.)

On these tables are items that were donated for our raffle, all proceeds going to the Aicardi Syndrome Foundation.

One item that was raffled was this beautiful quilt.  At the last conference in 2012, each family got to decorate a square of this quilt in honor or in memory of their Aicardi daughter.

This is Annie's square.

In addition to the raffle tables, we had several "Swap" tables where families brought medical equipment and supplies that they no longer need and other families can take what they need.

This is one of three photo boards with pictures of the families that were in attendance at the conference.  (We're in the middle at the bottom.)  What a bunch of amazing families!

 

This is our memorial table with pictures of the sweet girls who have passed on.  It's sad to see this group grow each year, but we will never forget these precious girls and their amazing parents and sibilngs, many of whom still attend the conferences.  They will always be a part of our Aicardi Family.

On the first day of classes, I taught a mini-session on vehicle modifications and wheelchair accessible vans.

And back by popular demand... Justin taught his class again on Seizure Drugs, this time adding on a segment regarding cannabis for the treatment of seizures.  And as usual, he did a great job.  He's definitely one smart man!

Justin also brought his graduate student from Creighton University to help out with the presentation.  It was very well attended.

At the same time Justin was teaching, I taught a class on traveling with a special needs child.

After teaching my class, I got the kids out of childcare and we went to listen to the end of Justin's presentation on medical marijuana.  I found it very interesting and learned a lot, but it didn't hold Lexie's attention and she fell sleep at the table.

This is the group photo of all the Aicardi girls in attendance.  It is always amazing to see them all together and think about the amount of strength, courage, and love in one room!  This is a room full of heroes and celestial spirits!

Similarly, this is a group photo of all the siblings--all the kids at the conference who have a sister with Aicardi Syndrome.  I say that this group is also a group of heroes of a different kind.  Never have I met such kind and compassionate children and teenagers!  These kids only see each other every two years at our conferences, but they have bonds between them that will last a lifetime.

This was a gift for the founders of the Aicardi Syndrome Foundation.  It is a family tree made with the fingerprints of the Aicardi girls that were in attendance.  It is symbolic because in the heart on the trunk of the tree are the initials "K.M." after the founders' daughter, Kristin Meo.  It is all because of her that we now have our Aicardi family.

Annie's fingerprint is above in purple, surrounded by her Aicardi sisters.

 

The first night of the conference we had an ice cream social.  Lexie thought that was a great idea!

One night at the conference a dance is held--as I said, this is a fun conference with a lot of happy people.  We know how to party and have a good time!

Dancing with Molly

 

At the dance with Lexie

This is Caleigh who has an Aicardi sister Annie's age.  She and our family are close friends.  Caleigh was so awesome to spend time at the dance dancing with Lexie.  They were so cute together doing matching dance moves and playing together.  These older siblings like Caleigh are so sweet to take other younger siblings under their wings and become their good friends.

Molly and Natalie had fun dancing the YMCA together!

Molly has friends who know what her life is like.

And Annie has friends just like her too.

Lexie was super excited to see her friend Kendall again!  They had a blast playing together.

And these are two of my dearest friends who each have a daughter Annie's age.  We've supported and helped each other since our girls were just babies at our first conference in 2004.  It such a healing feeling to have good friends who truly understand.  We just wish we all lived closer and could see each other more often!

Final raffle drawing at the end of the conference.

 

Helping give closing remarks at the end of the conference.  We were each finishing the sentence, "You know you're an Aicardi parent when..."  Our group definitely has a unique sense of humor!

...A great group of women I got to work with--some of the best Aicardi moms around!  I'm so grateful for their friendship!

I'm so grateful that my mom was able to attend with us.  She helped a lot with the kids so I could focus on committee responsibilities.

This is the atrium of the hotel where the guest rooms were located.

And this is the lobby area of the conference hall where our sessions and meals were held.

Miniature golf at the resort

After the conference ended on Sunday, we took a drive to see the Chicago LDS Temple.  The girls crashed on the ride up there, and Lexie wasn't too happy about having to wake up to see the temple.

...But it was beautiful!

 
 This is only just a small sampling of our Aicardi conference.  If you want to see more pictures of our friends, the dance, the ice cream social, and these sweet Aicardi girls, I have more pictures on my Facebook page.  Now let the planning for the 2016 Conference in Houston begin!