By Miaja Rocciola, Mother to Lexi Rocciola, age 18
My first experience at the Hydrocephalus Association’s National Conference on Hydrocephalus was in 2000. I had no idea what to expect, but I knew I wanted to attend as many sessions as I could since my daughter, Lexi, was only 4 years old. I was very hungry for information that could possibly help her in the future. I found the conference to be very informative, but also very fun! Since then, my family and I have attend 3 additional conferences and we are very much looking forward to the upcoming 13th National Conference on Hydrocephalus being held this summer in Portland, OR.
The one aspect of conference that stands out for my family and I are the Interpersonal Connection Sessions. This is a time to connect and share openly with peers who are in a similar situation. HA provides a safe, confidential setting. I attend the interpersonal connection session held for mother’s of teenagers living with hydrocephalus, my husband attends the session for fathers, my youngest daughter attends the session that is available for siblings, and Lexi attends the session for teenagers living with hydrocephalus. We have each met friends that know what our lives are like. We share information, tips, and tears. But the very BEST part of the conference is seeing Lexi with her group of friends — just being teenagers. It is a time for them to come together and feel accepted by each other with no worries about “fitting in” or feeling left out. If one of them had a recent surgery and has a shaved head, no one even notices because they, too, have been there. It has been so special to see these kids grow up from small toddlers to tall teenagers, but one thing hasn’t changed, and that is the friendship that they all share when they see each other every two years at conference. I hope to see you and your loved ones this year in Portland and that you get a chance to see the group of teenagers that have grown up attending HA Conferences.