Tomorrow I present at the 11th CHARGE Syndrome Foundation Conference. It’s our 3rd conference, as it’s held every other year. Last year I presented tips on how I stay organized with all of Alexis’ medical and educational paperwork.
This year, a friend of mine and I submitted a paper called “We are in CHARGE”. I always like to have fun names for conference talks, especially ones that are for parents. The titles really can be overwhelming – and not sound at all inviting. I indeed like the triple-play on words that the title offers: 1) CHARGE = CHARGE Syndrome, 2) CHARGE = having control over or responsibility for and 3) CHARGE = We are in the family of CHARGE Syndrome – kids/adults, parents/caregivers, teachers/therapists.
As I’ve written about here, we were told that Alexis would not survive at all. Thankfully we overcame that stark reality and started to recover and work to build the list of “Alexis can” instead of the list of “Alexis can’t”.
Hence one of my main reasons for working on a presentation this year – to get into the open the painful ‘can’t lists’ – so we can clear the air and focus on the “can lists”! If you’re interested in viewing the presentation materials – check them out:
When you meet someone like me on the street, please be open to ask us about the “Alexis can” list. It reiterates what is good and right in the world. And for sure if you’re a doctor treating Alexis, if you talk too long about the “Alexis can’t” list, then we “can’t” make a follow-up. Sorry, but my Alexis is all about CAN.