2010 Aicardi Syndrome Family Conference

Our family just returned home from the biennial Aicardi Syndrome Family Conference in Chicago.  There were about 87 families in attendance, some of our friends coming as far as Norway, France, and England.  This was our fourth conference to attend—we haven’t missed one yet since Annie was diagnosed.  We love these conferences because there is such a strong unique bond with these other families and their precious daughters.  We truly consider them as family and can’t wait to see them all at each conference.

What a wonderful conference this year!  One of the highlights of this trip was being able to meet two Mormon Aicardi moms for the first time in person.  Brittany’s daughter Brooke is 8 months old and was diagnosed shortly after birth.  Robin came alone—her daughter MacKenzie passed away 3 years ago.  This was the first conference for each of them to attend.   It’s always so wonderful to be surrounded by Aicardi moms who know what I face each day, but then you add the Mormon faith as a commonality and these are the women who really “get” it!  What a huge blessing they are in my life!

Brittany and me

Robin and me

A lot of people wonder exactly what we do at these conferences each year, so here’s a review of what we did.

We arrived the day before the conference started and had a great time chatting with other families Thursday night.  It’s so great to be around people who know exactly what my life is like and the issues we face on a daily basis. 

Jen, Azaria, Debi, Marcie, me, and Brittany

Friday morning was the welcome and opening remarks.  A speaker talked about dreaming new dreams and needing to reinvent your own sense of “normal” after the diagnosis of your child.  It was inspirational and hopeful and reminded me of the early days after receiving Annie’s diagnosis.

We then had breakout sessions the rest of the afternoon where we could pick among three classes to attend each hour.  Justin attended the “Wills, Trusts, and Estate Planning” session.  We attended that class at the last conference, and again, it was helpful as we continue to work to create a special needs trust for Annie and learn all the special considerations we must make in our will and trust to meet Annie’s needs. I attended the “IEP and Advocacy” class with my “little sister” family, Brittany and Brooke.  We are very comfortable going through the IEP process each year in the schools, but this class was a good reminder that occasionally we need to really fight for what our daughters need.

Carrie and Macey with Annie and me

Justin and I then both attended the breakout session for parents of children ages 8-12.  This was a casual discussion where we were able to discuss common issues that our children are facing in this age range.  We were able to learn more about lift systems, especially the ceiling rail lift.  Also during this class we were able to discuss other issues like larger wheelchair options, and early onset of puberty and how to deal with that.  (Most AS girls, including Annie, start the earliest phases of puberty at around 5 years old, so it was nice to be around other people facing that.)  This age group of girls is also the group of families that we feel the closest too—the ones that received the diagnosis around the same time we did and came to their first conference the same time as us.  What an awesome group of friends!

Debi and Azaria with Annie and me

For the last hour of breakout sessions on Friday Justin taught his usual class on the various seizure drugs available and how they each work.  I’ve seen his presentation twice at previous conferences, so I attended the “Stress Management” class during that time.  A professional counselor came to discuss stress management with us, which was nice but I felt like even she didn’t quite understand the stress of raising a child with disabilities. But I did enjoy the open discussion at the end where we all got to share different coping strategies that have worked in our own lives. 

Christine and Catherine with Annie and me

Friday evening before dinner we did a group photograph of all our daughters. (You can play Where's Waldo to find Annie). It’s always amazing to me to see all these beautiful and innocent girls lined up together.  We are surrounded by angels and perfect spirits who are so much more brave and noble than I ever will be.  It is so humbling to see them all together and know that each precious girl is absolutely perfect. We then had dinner and an ice cream social and I continued to chat with Brittany and Robin that night and later joined the rest of the group in the atrium to talk for hours.  What wonderful company!

 Aicardi Sisters

Aicardi Sisters

On Saturday, Dr. Van den Veyver from Baylor and Dr. Sherr from UCSF both came to give us their updates on research on Aicardi Syndrome and agenesis of the corpos callosum.  Our family has donated DNA and medical records to help further their research so it’s nice of them to come and give their recent findings.

Later we all talked about fundraising efforts.  Different families shared what types of fundraisers they have done that have been successful and new ideas were suggested also.  The Aicardi Syndrome Foundation is a wonderful non-profit organization run completely by unpaid volunteers.   Funds raised help pay for these wonderful conferences, help fund the ongoing research on Aicardi Syndrome, and help families in our group with medical equipment that can’t get funded elsewhere.  All donations are tax-deductable.  You can easily donate by going to the Aicardi Syndrome Foundation website.

Kim and Evelyn with Annie and me

The next breakout session I attended was called “Creative Comebacks to Questionable Queries.”  This is one session I love and look forward to at every conference!  Maryellen does a fabulous job at teaching us all to have a sense of humor with the insensitive comments that people make to us about our daughters.  We had a great time laughing and coming up with funny ways to answer people’s odd questions about our daughters, or how to handle people staring.


In the afternoon, Justin and I attended the “End of Life Issues” session.  I attended it at the last conference and wished Justin had come with me, so this year we went together.  This was one class that I really appreciated attending because that’s one topic that I know my friends back home just aren’t comfortable talking with me about.  No one wants to talk about the death of a child, but when it’s your own child who has passed or it’s your own child who you know will pass before you, it’s a reality that we don’t like to ignore or deny. 

This class was good about teaching us exactly who to call if Annie passes at home and the benefits of Do Not Resuscitate orders and having her enrolled in hospice.  Several families were very kind to share their experiences with the loss of their daughters.  I love being around people who are so willing to share these experiences.  It’s comforting to know that once Annie passes we’ll always have these friends to talk to and who will be able to relate to us.

Lexie and Justin admiring Brittany's precious daughter Brooke

Next I attended the “Salivary Gland Ablation” session which blew me away!  We’ve always thrown around the idea of having some of Annie’s salivary glands removed, but the doctor at this session presented a new technique for ablating the glands without removing them and with fewer risks and side effects.  Fascinating!

For the last session on Saturday we met as Mothers, Fathers, or Grandparents.  In the Mothers group we spent most our time talking about how to balance all the demands that are put on our time and how to get alone time to do something we enjoy.   Every stay-at-home mom probably feels like she doesn’t get “me” time, but this Aicardi group REALLY gets it!  It was fun to talk to other moms who really know how demanding and stressful life can be with a special needs child.

After dinner Saturday night we watched the touching slideshow put together by Maryellen.  It was beautiful—a wonderful tribute to the girls who have passed and a fun celebration of life for all the girls that are still with us.  Again, it just reminds me of how absolutely perfect all these girls are and what a blessing it is to be surrounded by all of them at this conference.  Then each Aicardi girl received a beautiful quilt that a group of women had made for them.  Then there was the dance, kids went to bed, and I chatted with several friends in the atrium till midnight. 

The special women who made 95 quilts for the Aicardi girls.

During all these classes Friday and Saturday, Molly and Lexie attended a child care with other siblings of Aicardi girls.  Annie attended a separate child care for children with AS.

 Molly and Lexie excited to see Dad after a full day of child care.

This was the typical expression Lexie had on her face during the conference.  In 2012, we'll either leave the youngest kids home, or recruit a grandparent or friend to come to the conference with us to help with the other kids.

On Saturday I was also able to look more closely at the memorial table with all the pictures of the girls that have passed away.  Sadly, the number of pictures on the table increases at each conference.  It was difficult to see some girls’ pictures on that table for the first time, especially Regan who lived here in Omaha and sweet Carman who passed so unexpectedly.  The memorial table was a beautiful tribute to those precious girls.  I think this is the first conference where I looked at this table and choked up realizing that Annie’s picture will be on that table someday.

Memorial Table

I always admire the families that continue to come to the conferences after the passing of their daughters.  Many families have lost their daughters several years ago and still come to share in the bond of their Aicardi family.  But what is hardest to see are the few families who come each conference for the first time without their daughter.  We miss those sweet girls so much.  I’m so grateful that these parents continue to come.  I have loved hearing their stories this weekend about their daughters. 

Sunday we had closing remarks and an information expo.  The room was filled with information of all kinds that would help us take better care of our daughters.  From information on lift and elevator systems, wheelchair accessible vans, drug information, traditional and alternative therapy options, toys for children with special needs, etc.  It was a great time to visit and say all our goodbyes to the families leaving that morning.

Annie, Macey, Marissa, Dakota, and Catherine hanging out together at the Information Expo

We had packed up and had planned to drive home after the expo, but we realized we were so exhausted and not ready to leave some of our friends yet, so we decided Sunday morning to extend our stay one more night.  Molly had been missing us and was growing tired of child care the last two days, so after the conference was over we headed in to the American Girls Doll Store in downtown Chicago.  It killed me to have to pay $17 to park our car for half an hour, but the looks on Molly’s face were priceless.  She was so excited to see all the clothes and furniture and especially the horses that you could buy for your doll.  We had to get back quick to meet up with some friends, so we weren’t there long and we didn’t buy anything.  That really made Molly sad.  We should have told her that it was a museum and not a store!

 Molly was so excited to find the doll just like hers.

 And she was thrilled to see that the dolls had horses you could buy.

 But we didn't buy anything, so this is what Molly looked like for the 1 hour drive back to the hotel.

We got back to the resort and met back up with Brittany to go to dinner together before they left to go home.  Then we took everyone swimming and had a great time chatting with the McMullens and Anders at the pool.  The Anders even showed us a special needs floatation device they use with Marissa that allows her to safely float independently in the pool.  We tried it on Annie and it was pretty neat to see her “swim” by herself.  It’s all these little things that we would never learn about if it weren’t for our good friends in this group!  We said goodbye to everyone that night and tried to get to bed early.  We got a slow start Monday morning and finally left Chicago around 10:30am.

I am so incredibly grateful for the Aicardi Syndrome Foundation, the conference planning committee, and all our Aicardi family that surround us with love and support.  I can’t imagine not having this second family of ours.  This conference always makes me feel like I belong somewhere—like I’ve come “home” to this special family of ours and have friends that can relate to my struggles, my grief and even our joys.  We will miss everyone so much and wish the very best to all the girls over the next two years until we meet again.