Sometimes as parents we blaze the trail without even realizing it. I now am in a position to offer my hard-earned kernels of wisdom to Moms facing tantrums or the newborn stage. I always offer my advice only if asked with the caveat that never, ever ask me about potty training. That is unless you want your kids to be miserable and really old before being toliet-trained, then I’m your girl.
When I started this blog, I didn’t know that I would reach the tiny percentage of other Moms facing the challenges of raising children diagnosed with ectopia lentis. My family has come so far since the early days of uncertainty surrounding my boys vision, that sometimes I lose track of the fact that we are ectopia lentis survivors and thrivers. For those of you who are new to this blog, ectopia lentis is a rare, genetic condition which both my boys have, that compromises the lens of the eye and can severely impair vision. The road to great vision has been long for my boys and with patience and the help of an outstanding ophthalmologist, we came through the other side of this disorder relatively unscathed. By virtue of my boys leading ‘normal’ lives, we are helping other Moms know that ectopia lentis is only a small part of who their child is.
I would not change a minute of our experience if it in any way would alter who my kids are. All those tears I shed, all the nights of worry about their future and each and every eye surgery has been absolutely worth it. If ectopia lentis means I get to have these two guys as my kids, then honestly, I am the luckiest Mom around.
