Tuesday, June 25, 2013

An Alternate Universe

In my alternate universe I didn't have to have a conversation with my 11-year-old about the harsh realities of the dangers of just walking around in the world and catching something that could harm her or kill her. In my alternate universe, I just didn't.

But I did. I had to tell her the infection she had could be one that is so dangerous it takes lives. I used this as the reason it appears we run, not walk, to the doctor at the first sign of danger.

I believe that honesty with my kids is the most important thing as they grow into the people that will be taking care of their own health care. It was a cringe-worthy discussion for sure. In fact, my husband would have chosen to not have it at all.

Which way is the right way to go? I think it depends on your kids and what they can handle and what you're comfortable sharing and finally sharing in a way that works for you. We go the honest, straightforward route.

I wish I could say I don't mess up (in my alternate universe I surely don't mess up!) when talking with the kids about their disease, progression, symptoms or treatments, but I do. I have to believe that I do it right enough times to outweigh the times that I do not. Maybe it's cumulative, so at the end of my care giving of them, it'll weigh in my favor.

I think the hardest thing about living in this universe is thinking (longing for?) about the alternate one, where these conversations aren't even needed.

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Julia lives in Georgia amongst grits and diet coke, her husband and two kids who have had kidney transplants, will require liver transplants one day and who have learning disabilities and mental illness. She blogs at Kidneys and Eyes and is the co-founder of Support for Special Needs. 


  1. That is quite surprising... I have never heard of that before reading your post!
    It makes me quite puzzled and angry too!
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