Four Things Not to Say to a Brain Disorder Mama

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If I had to use one word to describe my life today, it would be uncertain.

If I had to use one word to describe what scares me the most, it would also be uncertain(ty).

When I learned that my son had a brain condition, I didn’t really fathom the magnitude of what that meant. I have spent my twenty-five years of life wanting to see everything in black and white. I like clear answers, right and wrong, yes and no, good and bad. I hate the in between, the uncertainty. I want to take the road most frequently traveled, the one paved out for me so I know exactly where I am going.

When I found out my baby was sick, I wanted a plan. I wanted to know how we could fix this. Instead I got: 

We are going to have to wait and see.

There are a wide variety of outcomes.

We have no idea what the future holds. The brain is just too complicated.

It has been eight months and I am still trying to wrap my mind around the uncertainty that my son and I exist in. One of the most challenging parts is that, for the most part, no one else gets it. Don’t get me wrong, I appreciate our support system more than words could explain. I couldn’t possibly expect anyone else to understand the complicated world that is raising a baby with a brain disorder. I live it every single day and I still don’t understand. I still haven’t found a great way to describe it. But I do know what I wish people would stop telling me.

Here are 4 things I wish I would stop hearing on a daily basis:

Pro-tip: This could apply to anyone raising a medically complex baby. 

1. He looks so normal. 

Honestly, I hate the word normal all together. Please don’t use it when regarding my son. What is normal anyways? Also, I know his condition isn’t always something we can see from the outside, but that doesn’t mean that it isn’t always present and it isn’t something he is always battling.

2. It’s all going to be okay.

You don’t know that and I don’t know that. I repeat this mantra in my head every moment of every day; its how I keep myself afloat. But when other people say it to me, it seems condescending. Like my anxiety and worry is for nothing.

3. Anything spiritual.

Unless you know the person you are talking too so well that you know exactly where they are in there faith journey, please, just don’t. My only exception to this is “I’m praying for you all.”

4. Well, he’s going to get better, right?

I have no clue and this is the question that haunts me. Please, don’t remind me that we have no idea.

At a loss for words? Here are suggestions of helpful things to say:

I love you.

How can I help?

Let’s grab coffee and talk about {insert anything, but my son’s brain condition here}.

You can do this.

 

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