Persons appear to us according to the light we throw upon them from our own minds.” Laura Ingalls Wilder
Ive been thinking about this for a long time expectations. Ill let you in on a little secret. Im a little addicted to two things: blogs and forums. I read all kinds for profit, personal, health. Blogs, blogs, and more blogs. Add in some discussion forums and I listen to a lot of strangers opinions.
After we learned about Mias possible diagnosis, reading them became more masochistic than really helpful. I mean, you either read someones really positive story or someones horror story. Ive found that if youre going to write a blog (especially a subject blog) then you have some pretty strong feelings about the issue at hand. Its rather difficult to find a person with an average run-of-the-mill situation (run-of-the-mill doesnt sell). Plus writers (good and bad) are fairly dramatic individuals just trying to tell a good story.
Which brings me to forums. Far worse than blogs, forums allow people to just say what theyre thinking spontaneously. For good or bad, you get to read the immediate and not always well thought out impressions of your fellow human beings. Sigh.
However, its in these forums that Ive discovered a paradox in expectations especially as it relates to blog writers. Given Mias diagnosis, Ive been gravitating to blogs about children and families dealing with disabilities. There are blogs I like and blogs I dont. No use discussing that here. I mean, everyone has blogs/bloggers they like and those they cant stand to read. What I have discovered is that some of the readers of these blogs have some very odd and inconsistent expectations for parents who have children with disabilities (maybe all humans in general). There is no right way to act or write. If the blogger is too positive then he or she doesnt know what they have coming to them or is in denial or is an amazing mother or father. If the blogger is too negative then he or she is either not dealing with the diagnosis well or being realistic.
Theres no room for different experiences. People just see the blogger, and I suppose regular humans like me, through the lens of their own experience. If the reader or viewer had a negative experience with a child with special needs, then ALL people with children with special needs will have negative experiences. When they are shown something outside their own experience, they are suspicious of what they see. Its only human to assume your experiences translate to others. That, of course, goes for positive experiences as well. Its seductive to look at a positive situation and say, Thats going to be me! Well, not necessarily. Life has infinite possibilities.
In addition, readers assume that the blogger is letting them in on their innermost feelings. Blogging is not a private journal. Youre not reading a diary, just someones crafted thoughts. Some are more crafted than others. You dont really KNOW someone unless you KNOW someone. Sometimes its not a good idea to trust the narrator, especially when they are narrating their own life.
Im sure that extends to all of our family, friends, and acquaintances as well. We judge from a distance. How are they handling it? How do they afford it? Etc, etc. All very human and Im guilty of that too.
With all of that said, Ive never been more confused about how to act in my entire life. How am I expected to act? Am I doing or saying the right things? Which should I be? Positive or negative? Im not quite sure how to be.
Im not a naturally positive person. As Ive said before, Im pretty snide and sarcastic. However, Im encouraged by things I see in Mias progress. Im pleasantly surprised that shes doing well and isnt plagued by constant health problems so far. At this point, shes doing the typical things that 3-month-olds do. I am always leery of the other shoe. When will it drop? However, being encouraged doesnt mean Im delusional. No more than having bad days means that Im an emotional wreck all of the time. Im gathering from the people I actually know who have children with special needs and my present experience (limited though it is) that life is pretty normal and boring. You still get up, go grocery shopping, watch TV, read books, have conversations, eat, and sleep. So, its just a life an average, run-of-the-mill life. It does have its own special challenges, but everyone has their own special challenges.
In fact, sometimes I think I manufacture drama because life is supposed to be dramatic, right? Why isnt life more dramatic? Shouldnt this be more dramatic?
Im just not sure where I fit on the spectrum of emotions. What kind of special needs parent am I? I have no idea. I spend my days being positive and negative, calm and anxious, frustrated and encouraged, happy and sad. To quote Walt Whitman, Do I contradict myself? Very well, then, I contradict myself; I am large — I contain multitudes.
Im fortunate to have family and friends who are just letting me be, not questioning me too much, and allowing me to be a human full of contradictions. The support is awesome.
This morning I found myself lost in thought, worrying about one thing or another, and getting anxious and over thinking things. I looked down at Mia (who I was holding) and I realized she was smiling at me. She was just smiling at me with big expectant eyes. It reminded me that I need to worry less about what strangers may think or if Im acting in the right way. I just have to be me. Live life. Love my people. Go with the flow.
11 For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11