When Sonzee was first diagnosed the immediate thing that occurred was exactly what her diagnosing physician warned us against; going onto the internet and googling C D K L 5. Within 2 minutes our world around us crumbled and life as we knew it was never going to be the same. A mere 5 character string that weighed more than our at the time maybe 9lb daughter. A string of characters that we didn't quite understand more than it meant we had found our reason for her seizures. It was the answer we had desperately sought but that we no longer wanted to have found. Yet through the darkness came a network, a secret club, really an immediate family we had no idea that existed up until then.
I cannot exactly remember the first time I learned of the CDKL5 little green dress, but it has been close to Sonzee's entire life since she was diagnosed so early on. The dress began its travels in the UK and has traveled around the world since it began its journey years ago. Facebook has really helped give it a sort of fame if you will, as it was the pictures previous recipients (members of our CDKL5 family) postings that originally caught my eye. Over the course of its travels, I watched as parents dressed up their little girls in a green fairy dress, thinking how sweet the girls looked in the dress, but not thinking too much more about the bigger picture. That was until last week when the box found its way into our house.
I waited a day to open the box because it was delivered right before Yom Kippur. I knew no picture would be taking place on Wednesday, so I didn't feel the need to see the entire box's contents. Immediately after the holiday ended I opened the box. I saw a smaller box inside and I knew once I peaked inside that I was going to need some moments with that box. This dress to me is more than a dress with fairy wings and some lime green accessories. There are children who have worn this dress who are no longer with us, there are children who will wear the dress in years to come who have not even been diagnosed yet, maybe who have not even been born yet. There is a world that is represented in this dress that is indescribable.
After I took Sonzee's picture I posted this on her facebook page. I won't ever know why our family was chosen to live among this community of rare. I won't ever understand why my daughter has to struggle to live each day and why she has to have seizures all the time. I won't ever be privy to the details of the greater plan, and truthfully, I am not even sure I would want to even entertain what I would be told because I would probably still be annoyed, upset, disappointed, and downright irate over the reason. Yet, one thing I do know, one thing I won't ever take for granted, and one thing this dress symbolizes is that we are never alone on this journey. There are families who have lived this journey before us, there are families living this journey alongside us, and there will be families living this journey after us...and that is something that is unique, powerful, and ironically beautiful about this whole entire world of CDKL5.