Authors: Molly Roberts, Texas Chargers Board Member, Denton
Keywords: Family Wisdom, Charge Syndrome, conference, friendship, social connections
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The International Charge Syndrome Conference is our family reunion, and we would not miss the opportunity to connect and learn from other families and professionals. Our experience at this year’s conference was unprecedented and the relationships we made impacted us in a fresh new way.
This year we brought our son Christian, who has CHARGE syndrome, to the conference but left his siblings at home so we could focus completely on this experience with him. We made some remarkable memories together. Dad, Christian and I boarded a plane super early in the morning and made our way to Florida. As usual, as we pulled up to the hotel we started recognizing faces and immediately felt at home. Home is not where you are, it is who is there. So, regardless of what state we are in, these incredible, unique, patient, loving individuals create a sense of acceptance that immediately make me feel like we belong.
The social on the first night of conference set the pace for the rest of the weekend. Typically, Christian prefers to stay on his iPad and not socialize. This night, however, we encouraged him to at least say hi and share his name with his peer group. Quickly he met Andrew, another teenager with CHARGE Syndrome. They had a lot in common: interests in How to Train Your Dragon and iPads. These two teenaged guys sat by each other and communicated through sign and their iPads until the hotel staff had to close the room. Their interaction was extraordinary so we decided creating opportunities for their friendship to grow would be the focus of our weekend.
The next day Christian attended camp for the morning session. He quickly started asking for his “friend”, Andrew. For the rest of the weekend, Andrew and Christian sat next to each other in sessions. They filled their time signing and using the iPad to share pictures, text messages and movies. The young men kept each other entertained, often laughing out loud at their inside jokes. The much anticipated event of the night was Signing Time with Rachel Coleman. The room filled with people with the little ones dancing and the big girls singing along. All the while, Andrew and Christian seemed engrossed in their own world. Not alone but clearly a world of two guys who completely understood each other. Later that evening, all the moms went out for lady’s night but the real party was in room 608 where the boys kept their connection full of life.
As usual, the session content was amazing and the speakers were top notch. We have come to expect that we will glean new information to bring home to our communities. However, it was Christian’s new friendship with Andrew that was so unexpected and made this year’s conference our best one yet. We left Andrew and his mom with big hugs and the promise to maintain contact. We plan on seeing them at the next family reunion, in our home state of Texas in 2019.