Yo soy La Lay

adventures in family, faith, and Down syndrome

Brain Power

John said he wanted me to write something today… that he had checked the blog and was disappointed that I hadn’t posted in a couple of days.  It’s a push that I needed.  Truthfully, I have had this post rolling around in my brain for some time, but I have feared sitting down to write it.  This isn’t pretty.

You see, I’m a smart person.  I earned really good grades in high school and college, high test scores, all that jazz.  I have a Master’s degree that I worked really hard at.  I’ve always valued and appreciated the kind of intelligence that gets measured in schools.  A lot.   And now, I’m in trouble for it.

How often are others disregarded or disrespected because of a lack of intelligence?? And now, it’s making my brain spin.  It’s uncomfortable.  More than uncomfortable… it makes me hurt.

I’m not going to put Tessa into a box, but statistically, we can guess that school will be a struggle for her.  We can guess that she might not take Honors-level courses.  She probably won’t study law or medicine.  I won’t say never, but statistically, you know…

Sometimes, people in the world are going to have a hard time valuing her and her contributions because somehow, we’re living in a society that is really impressed by how “smart” a person is.  And rather than loving on someone who needs more help, we berate them.  We make or read and laugh at terrible internet memes about them – not always people with special needs, but people who do silly things or people who talk or act differently than what we have deemed “the norm.”  We put those people at the end of our jokes.  We don’t use the “r-word,” but we mock stupidity, burger-flipping, garbage-collecting.  We say things like “let’s face it, not all kids are going to college” or “he’s not the brightest crayon in the box” or “someone has to make my fries.”  In the worst of scenarios, we don’t even allow them to live.

All those comments are now personal.  They all sting.

Someday, someone will say something like that about my little girl.

I’m trying not to be overly sensitive.  I’m really pretty good at letting things roll off my shoulders.  I see a lot of value in all the different ways that people contribute to our society and I know that others do, too.  I know that a lot of people will really love my daughter and value and appreciate her while still making jokes about these things.  They aren’t bad people at all.

We just need more love, encouragement, support, kindness, compassion.

I’m working on it.


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On Words, take 2

Tessa is doing much better. She is not home yet, but will be soon.

This story is not about that.

Today, as I signed myself out of the Pediatrics ward, three nurses (none of whom were actually looking after Tessa) were discussing genetic testing.

Nurse #1: Well, my sister is having the tests. She’s older… She just wants to know.
Nurse #2: Yeah, I get that. I just didn’t.
Nurse #3: Well, I couldn’t have a kid like that. That’s just too much. I’m definitely testing someday.

This isn’t a piece about whether I’m for or against testing. It’s not about my feelings about abortion. It’s not meant to be religious or preachy… But it is a little bit about hurt feelings.

So to Nurse #3, a medical professional taking care of sick kids like mine, I just want to say the following:

Hey! Those “kids like that??” The ones you don’t want or can’t deal with? My baby, the one in room three that all you nurses oooh and aaah over… well, she is one of those kids. And I get it, Special Needs are challenging and overwhelming. But look around you. You are a nurse, frequently taking care of children like mine, and I can hear you. I can hear you saying that you’d rather not have a baby than have one like mine. And it hurts my feelings. Not because I think you are a bad person, but because you are caring for my child and you’ve put her into a box of unmanageable people. So please, when you decide to tell the world, in a giant open room filled with strangers, that you can’t deal with kids like mine, know that you are hurting a momma who believes very strongly that her child has a life worth living. You get an opinion. So do I. But a little caring and consideration for those who might have to hear you would go a long way. Because I was in a place I couldn’t leave. I couldn’t just switch to a different website or turn off the TV. Talk to your husband, your family, your girlfriends about it. Make your choice. But when you work, please be more sensitive. Because I love my girl. And I want the rest of the world to know that they can love her, too. She’s not “too much.” Just the way she is, she is perfect.