I was watching Bones (its a television show) Thursday night. One of the interesting story lines of night was two of the characters who are expecting a baby in a few months deal with being carriers of LSA (the other Leber's genetic disease , unrelated to what Abby has), Its a disease that ussally causes complete blindness.
Halfway through the viewing I heard Abby yelling for me. She was not feeling well at all. She had a fever and was feeling icky. I got her some medicine and she can out to sit with me while I finished the show. She heard the two parents talking about the chances their baby could be blind.
Abby first asked: Why they are upset and sad?
My first response was they were worried about their baby being safe. Abby said "Then the baby could just use a cane"
Then I responded that the parents where sad about all the things the baby wouldn't have a chance to see and the struggles with learning. She understood that one but sort of shrugged her shoulders and implied it still wasn't a big deal. I don't think she implied its not heartbreaking to deal with a child (or to be that child) who is blind but she also didn't' see it as the end of the world ether.
Abby sees her completely blind peers as amazing. She also know that blind people can do amazing things. I am always sure to share with her positive blind and visually impaired role models.
I recalled earlier in the program. (before Abby woke up) I watched at they talked with almost hushed tones that the baby could be blind. I kept finding my self thinking. "Oh common on its not that bad". Then I remember how devastated I was when I found out about Abby vision loss. The fear, the pain and sadness. It like I was walking around in some fog. I still cry and get sad. Dealing with vision loss is like a death in the family and you never quite get over it. In the beginning you deal with not only the grief but the unknown and sometimes the unknown is be very overwhelming.
I am grateful for the vision my daughter still has but even if she ever became completely blind It not the worse thing that can happen by far.
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about the "other Leber's" http://www.wonderbaby.org/articles/lca-faq.html
Abby's "Leber's" http://www.lhon.org
2 comments:
It is funny .. I thought Bones had bad info so I googled it and learned more... I started my day crying (watch bones thins morning) wish I could see the world like Abby!
Love your blog and I started to follow. I love following blogs with children like Finley - it makes us feel less alone. Even though they don't have the same diagnosis, they walk similar paths.
I hope you will come and join my blog as well and follow our story as well!
www.pletcher5journey.blogspot.com
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