When most of you get your child’s diagnosis of a chromosome 18 abnormality, you probably felt alone at one time or another. The fear of the unknown hits you hard and you wonder, “How am I going to be able to raise this child.” I’m sure a lot of you went straight to Google and ultimately found The Chromosome 18 Registry and Research Society. You became a member and at some point you heard about an annual family conference they host each in July. Some jump on the opportunity right way, which is what I did. Others are a bit intimidated or hesitant because they are unsure of what to expect.
After my I received my daughter’s diagnosis, I was at my first conference 3 months later. I had no idea what to expect, but I was welcomed immediately with open arms. I met so many new friends the first day. I never felt out of place or not a part of the group. I’m fact, it felt like I had known these people for years. The sessions were very informative and gave me a perspective on what to expect for the future. I had fun with the activities that were planned, breakout groups, letting the kids play together, adult talks, taking photos of all the interactions and the overall camaraderie. I learned so much in the short 3 days and left there more educated about my daughters syndrome. I was on a high and felt so supported by the registry and my new friends.
Fast forward to today, 18 years later. I have only missed a few conferences over the years. I plan my summer vacation around conference dates each year and try to make it a priority to attend. There is so much excitement in my home for months leading up to conference time, including this year. My daughter talks to her C18 friends on FaceTime and all she asks of them each time is if we will see them at conference. It is a joy to hear the excitement from these kids.
We are coming to Texas a few days early and will check into the conference hotel on Wednesday. The question is, who will greet us as we walk into the hotel? Immediately we will see families checking in and friends wondering looking for people to say hello to.
Don’t be shy, we are all one big happy family. When you go to conference check-in, you will meet several people. Some volunteers, old and new families, self advocates, and board members. If it’s your first time, you might feel overwhelmed and that’s ok. The days ahead are for you! You will find yourself getting comfortable and I hope you get the feeling that you being there is just where you need to be.
Soak up the information in the sessions, take time to chat with others, ask questions and most importantly have fun. The final evening is the Starfish Dance, so be ready for a good time. Again, we are family and it will definitely be a night to remember.
Conference is a big financial commitment and I know not everyone can do it. If you do get a chance to go, I know you won’t regret it. If you are coming this year, safe travels to San Antonio. And if you are unable to attend, I hope to see you next year.
Stacey Gallardo