Juvenile Batten disease is a fatal, genetic disorder of the central nervous system that begins in childhood. Early symptoms of this disorder appear between the ages of 5 and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of vision, motor skills and the abilities to eat and initiate elimination. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is fatal by late teens or early twenties. This was 2004 when she was 4. She was perfect.
Having a blind child makes you look at life a different way. Blindness without anything else, like Batten disease, causes you to look at life in a profoundly different way. Last night I saw a clip about a cat named “Honeybee” who is from Fiji and was adopted. Her human takes her on hikes with a harness and leash and wears her in a pouch on the way down from the hike. Absolutely beautiful, simple video and worth a watch:
Gosh this has been a busy couple of UNEVENTFUL weeks! Just the way I want it! We had THE REAL Santa and his Elves pay a visit to our house on Friday night, complete with presents for the kids, the cats and Holly (our dog). The kids were SO excited! This week is a short week at school and on Wednesday they are having “Polar Express” day and I’ll be going in to help out with that. Today at 12:30 a blind man is coming into Rachel’s special ed class to talk about being blind but Rachel gets out of school everyday at 11:15 so I’ll be bringing her home for lunch then taking her back in. I hope I get to stay and listen to him speak. I hope everyone is enjoying this Holiday Season. I have plenty of pictures to post and will get around to doing that this week before Christmas. Now tell me, what are your family plans this week? My children and I LOVE this time of year! If you quickly type out your traditions I’ll read them to my kiddos and maybe we’ll adopt some of your traditions. Thank you!!