Growing Up Blind

I have tried not to dwell  on Sarah's struggles too much in this space because there are so many people who have it so much worse/harder than we do. Besides that I think that if I dwelled on all that she goes through and struggles with it would make this space seem glum and quite depressing. Who wants to spend their time reading a depressing blog? Not me.

But sometimes I need to write about her struggles because by writing about it I know that some of you are going through similar struggles with children of your own. It makes me feel not so alone as you read my words and can understand profoundly some of the emotions I feel in living and parenting Sarah.

There is so much that I still do not understand about what it means to be blind - let alone to grow up that way. It is hard enough to grow up when you are healthy. Add to that being abled differently and it makes it that much harder. (I like to use the phrase abled differently rather than disabled.) I will always be thankful that Sarah had vision at one time because she can use those memories to help her navigate through her new world in some situations. I fear that if there is no cure for her in the near future that she may one day forget what it was like to once have been able to see.

It hurts me that she can no longer see peoples faces and when she makes new friends she has to ask me or her siblings what that person looks like. She can no longer see the changes in her brothers and sister as they grow. She no longer can see how big her cousins are getting and will have never known what her newest cousin looks like except by description.

Sarah cannot see what she looks like either or how much she has changed. Which makes this phase of our life particularly challenging for me because she is in the beginning stages of puberty. I had to talk with her the other day about how she can no longer walk around in her underwear when she wakes up in the morning because her body is beginning to look different. If she was able to still see she would know this by sight and we would have never had to have a conversation like that. It was hard because I don't want to stifle her natural inclinations and I don't want to make her feel that her body is something that should be hidden, but at the same time I don't want her siblings to be uncomfortable looking at her ever changing body.

I dread when the time comes and she gets her period. How do you show a non-seeing person that she needs to change her pad? How do you show her how to change a tampon when she cannot see descriptions or diagrams of how things work?  How do you protect her from the days that she may not realize that her period is coming and walks around with a spot on the back of her pants that everyone else can see but her?  How do you protect her from those cruel people who make comments about the patch of hair that she missed while shaving her legs, but cannot see, and stands out when she wears shorts or a skirt?

There is so much that I do not realize is different for Sarah because she is blind. So much it is unbelievable. It seems like just when I feel like I have a handle on things regarding her something new pops up and knocks me back on my butt.  

As much as I feel I should be used to being a mother of a daughter who is blind there are times when I struggle. There are times when it still doesn't seem real - even 2+ years later. I feel very ill equipped to walk my oldest daughter through life as a visually impaired person.  I have no idea what I am doing with a healthy daughter - let alone with one with special needs. Lately, I feel like saying to God, "Okay. Joke's on me, God. I get it. Now change it back and make things better because you picked the wrong girl to handle this."

But then I will see Sarah smile or I will see her ride a horse again for the first time since losing her vision and then I will remember that I've got this. God will help me through this. So will you.

Thanks for letting me write about Sarah. Thanks for letting me vent, pout, cry, and shout. For my own sanity I need to be able to do this every once in a while.  I know you have your struggles too, and by writing about Sarah it makes me realize that I am not alone. Sometimes that makes all the difference in the world.