What is a Binga?

So a blog is a deeply personal thing; a place to pour your heart out and invite others to share in your experiences. You can cry, and laugh, and cheer - you can get mad or find a cause to believe in. But what happens when the blog you want to write is about a child? How do you weigh her privacy against sharing some of her stories so that people might empathize with her?

I've been struggling with these questions and plan to tread carefully and with her permission while bringing you to know her, so please meet Tobi; Our Little Binga. What is a Binga? We have no idea but we've been calling our youngest daughter a binga since the day she was born and this blog is for her!

Please follow us on our quest for a Service Dog for Tobi.

Sunday, July 8, 2012

Weighing privacy vs. the desire to educate

Tobi & her Grammy fly a kite.
Writing has always been an outlet for me and yet I sit here now, trying to pluck the words out of my head to type on the screen. I have a story to tell but how do I do it without violating the privacy of my child? She depends on me to protect her and in my telling of her story, I can educate others on her need and bring her a measure of safety that I can't always be there to provide. But how much do I share without crossing the line? How do I know when to stop to protect her privacy? The simple answer is "ask Tobi". The more complicated answer is "I don't know".

 Tobi loves that she has a blog. She loves to see posts go up with her name in them; loves to know that people are reading about her, and that I'm sharing her pictures. So often Tobi feels like the only thing she can do well is Art and needs a lot of reassuring. Art is the one thing she knows, loves, is always doing, and the most important thing she thinks she has going for her. Her art is truly amazing but so is she and it can be a struggle to help her see that.

 I have waxed and waned over various helpful organizations, trying to decide if our cause is 'just' enough, or if I should be telling even one more place about my daughter. The internet can be a scary place, but so can it be a wonderful and helping tool. How do I decide when I'm giving away too much information? Is it worth the risk for the outcome we are trying to achieve? I struggle constantly with this. I can't sleep at night anymore, my own anxiety shoots through the roof and my personal battles with OCD intensify. And when I'm antsy, I want to DO something.

Have you heard of the Spoon Theory? If you have not, I encourage you to read this insightful article, then you will understand when I say I thought I had way more spoons than I did the other day. It cost me for the next 4 days. Being stuck in bed propped up with pillows gave me a lot of time to consider this dilemma Tobi's daddy and I face.

 How much information is too much information? I guess I will have to weigh this each and every time I write about Tobi, or contact an organization or a business; every time I share the link to this blog and make one more phone call on behalf of my daughter. There is no right way to answer this question, as I have come to accept. I just have to keep doing what I feel is right for Tobi and if that means sharing or not, towing the line or throwing it away, I will always do my best to respect her privacy while also sharing her story.

With this in mind, I shared my wish for Tobi at Wish Upon a Hero, and I thank Chris & K9 Bronx for directing me there.

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