NODCC Conference

"She's going to be OK", so said Connor, the young man with ACC we met at the NODCC (National Organization for Disorders of the Corpus Callosum) Conference this week-end. It was such an overwhelming, intense, inspiring and hard week-end. It was David's second annual conference (and first as a board member), and the rest of the families' first conference. My mom and David's parents came and it was such a special opportunity to share the week-end with them. There are so many things to share, but here are a few things running through my mind tonight.

• Gratitude - While Taylor is more "involved" (the word for how severe the condition is) than many, she is so much better off than many of the kids too. And we are so blessed to have our family. I met a little one year-old boy who has severe seizures and has code-blue'd twice - he stops breathing and his family is desperate for a solution. In the mom's group, I heard tale after tale of marriages in trouble and women at their wit's end. We saw so many kids with really, really tough medical situations - I am so grateful that Taylor "just" has ACC, versus the myriad of other conditions some of these kids have to deal with. We are also grateful for the ACC community - there were about 300 families represented - most from the US, but from countries like Japan, Norway, and Australia. This will be a safe-haven for Taylor - a world where she will always fit in. These kids live to see each other every year and the families deeply understand what we're going through.
• Pride - You should have SEEN Lauren and Jacob - these big kids, at the old ages of 7 and 5, saw more disabled people and disturbing images than many see in a lifetime. They need to understand Taylor's ACC and realize our family is not alone, and they handled a very deep week-end incredibly well. The conference had a fabulous kid's camp - where they did art projects, played games, and had fun while we attended sessions. The camp was for typically developing syblings and the kids with ACC. This meant Lauren and Jacob saw grown men playing with Tonka trucks, a very "involved" young man who held a baby toy and stared at the wall most of the day, a teen-age girl with major behavoiral problems who held a baby doll all day, and many other really tough situations. At the same time, they made friends with many kids (both siblings and those with ACC) and had a great time at camp. A few times, it got too much for Lauren and she asked to go home. We would take a break and talk and the grandparents were great about taking them for outings to the pool, Great America amusement park, and the movies. We were so, so proud of them.
• Hope - While there were tough situations to see and hear about, we also saw kids with ACC that are largely "normal" and met adults who have gone to college, are married and some have children. There is hope for Taylor and we are even more motivated to give her everything we can to help her reach her full potential. At the same time, we heard the resounding theme that we have to pace ourselves, take care of ourselves and our family, and have faith that "what will be, will be."

I'll write more later....we learned so much and have a lot to share. It was a tiring, exhausting and long week-end, but we are so proud of our family, and I have renewed faith that, as Connor says "she will be OK."