You're Okay, I'm Okay

Like many families, we are preparing for our summer vacation. Before Aubrie and CHARGE syndrome, we didn’t take regular family vacations. Now the location of the International CHARGE Syndrome Conferences every 2 years determines the destination for our family vacation.

Each time we prepare for our trip, I am taken back to our first conference. Aubrie was not yet one year old and Andrew was 6 when my mom and I took the kids from Chicago to Houston. The conference always begins with an evening “getting acquainted” reception. We didn’t know what to expect as we entered the large hotel ballroom. We found it filled with CHARGE families of all ages, sizes, and ethnicities. There were parents, grandparents, siblings, and kids of all ages with CHARGE. I finally met hundreds of parents I’d been corresponding with via E-mail.

When we got back to our room, I was surprised to find myself sobbing on my mom’s shoulder. I hadn’t realized that I was feeling so inferior. When I saw all of these families who were competent, happy, successful, and thriving, I knew we would be ok too. I was overcome with tears of relief and letting go of all of those heavy emotions. We spent the weekend feeling totally at home in a far away hotel full of strangers who understood.

Two years later, as we drove up to the next conference hotel, Andrew asked, “Why are all the CHARGE families so nice? Does CHARGE happen only to nice families or do only the nice CHARGE families come to conferences?”

Our international CHARGE family has become truly that – a family. The first time I met them is permanently etched in my memory. It’s hard to explain what it means to me to have that connection with other people who absolutely understand every nuance of our quirky life. Some parents reject the idea of support groups and have difficulty moving beyond their need for privacy and out of their comfort zone to meet other families living in similar circumstances. I ache to express to them the value of making those connections. How desperate and isolating it must feel to be alone on this journey. I know Aubrie’s successes (and those of our family) are due in large part to the knowledge, experience, and support shared through our CHARGE family.

I look forward to the upcoming reunion with them. Now – how many suitcases, how much food, and how many books and games can we cram in the car with 4 people?? California, here we come!