It's been a while since Adin and I attended the Aicardi Family Conference last July. I think we needed some reflection time before being able to properly communicate our experience. The Aicardi Syndrome Foundation hosts this bi-annual conference for families affected by Aicardi Syndrome. As fate would have it, it just so happened to be three weeks after Sadie was diagnosed, and in the western Chicago suburbs.
We received a call from another mother encouraging us to go. We weren't sure if we were ready to face this reality, but decided that it would definitely be helpful for us to learn more about this new world we were about to enter.
I still remember our first day at the conference. Pulling into the hotel parking lot, I had ideas of what I might see - lots of handicapped vehicles, girls in wheelchairs - my heart was beating out of my chest as we entered the registration room. Everywhere we looked, there were girls affected by the Syndrome who seemed very limited in their abilities. Many were unable to walk, speak, hold their heads up independently...it was very emotional for both of us. As another new parent so appropriately put it,"It's like looking into a crystal ball...but you don't like what you're seeing."
We were greeted with open arms by the families. We were so grateful to attend this conference and learn more about Aicardi Syndrome, as well as the many issues that we will be dealing with as Sadie gets older - advocacy, special needs trusts, therapies, specialized equipment, etc. But most of all, it gave us a support group of familes going through the same thing. We met some great people who we will keep in touch with for many years.
When you're raising a disabled child, your perspective of others with disabilites is quickly adjusted. By the end of the three-day conference, I realized that I was no longer seeing these children in terms of what they could NOT do, and instead was seeing what they COULD do.
We received a call from another mother encouraging us to go. We weren't sure if we were ready to face this reality, but decided that it would definitely be helpful for us to learn more about this new world we were about to enter.
I still remember our first day at the conference. Pulling into the hotel parking lot, I had ideas of what I might see - lots of handicapped vehicles, girls in wheelchairs - my heart was beating out of my chest as we entered the registration room. Everywhere we looked, there were girls affected by the Syndrome who seemed very limited in their abilities. Many were unable to walk, speak, hold their heads up independently...it was very emotional for both of us. As another new parent so appropriately put it,"It's like looking into a crystal ball...but you don't like what you're seeing."
We were greeted with open arms by the families. We were so grateful to attend this conference and learn more about Aicardi Syndrome, as well as the many issues that we will be dealing with as Sadie gets older - advocacy, special needs trusts, therapies, specialized equipment, etc. But most of all, it gave us a support group of familes going through the same thing. We met some great people who we will keep in touch with for many years.
When you're raising a disabled child, your perspective of others with disabilites is quickly adjusted. By the end of the three-day conference, I realized that I was no longer seeing these children in terms of what they could NOT do, and instead was seeing what they COULD do.
beautiful, beautiful, beautiful!
ReplyDeleteJust makes me cry..with happiness!! Love to you all
ReplyDelete