My family and I arrived home last Sunday night from a wonderful weekend in Boston. We, along with several other families of children diagnosed with anophthalmia and micropthalmia, gathered in the historical city for a weekend of learning, bonding and support. Words cannot completely express the atmosphere in the ballroom the night of registration where families met, some for the first time- others reconnecting after meeting at previous ICAN or other blindness conferences. The room was full of emotion. You could feel the excitement, listening to all the hellos and introductions forming new friendships. Children played while their laughter echoed the hallways. Most of all, I felt the comfort. The comfort of knowing all these families, even though we were all still different, had felt similar trials and tribulations, anxiety of the unknown, and eventually the triumphs, of raising a child like mine.
We all came from different places, one family as far away as the Bahamas, while another parent flew in from the UK and also presented at the Saturday event. But we were all there for one reason. Some children had some vision, others had never had any at all. Some were siblings with perfect vision, other siblings also had vision loss.
It was something to experience all the children playing together at the Saturday night dinner party. It was like any other childrens' event- full of laughter, running, parent's voices of direction, and of course a few tears were shed over who got to hold the microphone to sing karaoke. My point being, we aren't any different just because we can't see!
A conference such as this one, is a priceless experience, however it takes quite a bit of money to hold it every two years. If anyone would like to help ICAN, please become a fundraiser on www.FirstGiving.com, or locate a fundraiser through www.FirstGiving.com and donate raised funds there. You will hear more about the Boston conference in my next blog posts, but until then I urge you to read about anophthalmia and micropthalmia online at www.anophthalmia.org. If you have questions, please feel free to email me or post your comments here! We love raising awareness about anophthalmia!