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Re-reading older posts, I was dismayed aghast at how angry my original “chosen” post was. Here’s Take 2.

****

Visualize: “Janey”. Her hair is dark, she’s got a Master’s degree in biochemistry, which is her field of passion. A rockin’ job, supportive boss, 6 figure salary. A husband that loves her, one young son. Parents who adore her. I know this woman, and by the way, she has cerebral palsy.

Then there is Sandra. Sandra was molested by her own father. She then spent years years abusing herself.  While she did go to school and receive her bachelor’s degree, she struggled with alcoholism and drug addiction, “band aids” for her pain, before finally reaching a point in which she could find and receive recovery. Sandra doesn’t have a lot of money but is good looking and bright, she doesn’t walk in the tell-tale toe-first gait that many with Cerebral Palsy do; on the outside of it all, she is the one who is “whole”, the one less pitied because she doesn’t have a disability.

But she’s the one who had her spirit, her soul shredded.

So tell me, what’s a “disability”?

*****

There was a pretty ripping birth story that was posted on my Mommy Group Board a while ago, about a mother receiving the extra surprise of Down syndrome, along with her new baby.

The thing that kills me is a lot of follow up Mommy comments went along the lines of God choosing “them to be mothers of these special babies…” and stuff like that. You know, God-chosen. Special.
I am deeply in love with God, but I think that’s hogwash.

What about it makes sense? I do think there is such a thing as ‘tests‘ – things that happen in our lives that provide an opportunity to strengthen, temper our spirits into some stronger stuff.

I think it’s how we respond to given situations, the choices that we make, that define who we become in the course of our lives. Right?

Anybody can have a disability (it is, as they say, the only minority group anyone can join at any time!). Everyone is sooner or later affected by disability. Be it their own selves or a family member or friend – I don’t care WHO you are, if you are human and if you are alive, you are going to be affected in some way in the course of your life. If you are not already

So what does that make us all? God-chosen?

We’ve all been “touched” by disability (or will be). Why does disability need to be so very ‘special’? It’s a natural and normal part of the human experience if it does indeed affect us all.

Why do we need to say of mothers who have a kid with a disability as being better, stronger, more equipped than mothers of kids without disabilities?

This bothers me.

It reminds me of a time, years ago, when I visited my Dad in his 5th grade classroom. He had a picture of this kid taped on the wall, who was grinning from ear to ear. The kid was in a power chair, hooked up to all kinds of ventilators. A firefighter was crouching next to the kid.

I asked my Dad who the kid was. Dad said he didn’t know. So I asked him why he had the picture of the kid taped to the wall. Dad said something along the lines of the kid just being alive! And smiling! Wow!

I got pissed and I was like, so, by virtue of the fact that he’s in a power chair and using ventilators, we’re supposed to be celebrating him, and just in awe that he’s smiling? That he’s happy? What bullshit! What kind of message are you sending to the kids in your class that go home to loneliness, neglect, misery and poverty? To a parent that beats them? You are saying that because they can walk and don’t use a ventilator, everything is okay? That we need to feel sorry for and “inspired” by kids who use power chairs? If we don’t know anything at all about their life?

Let’s think back to Janey and Sandra.

What if that kid with a disability – like Janey – has awesome parents that love him to pieces? He’ll grow up with every advantage, go to a great school. Graduate and work in a job he loves. Get married, have kids. How stupid is it to assume his life will somehow be less just because he’s got a disability? How stupid to assume a life is somehow more or easier because someone doesn’t have a disability?

My Dad had a hard time understanding what I was saying. Could be because I have such a hard time articulating these thoughts of mine. He thinks I’m angry. I’m not. Really, I’m not. I just don’t understand things, don’t understand this ‘chosen‘ stuff, don’t understand why people need to feel ‘inspired‘ by disability and why things are the way they are.

Re-reading older posts, I was dismayed aghast at how angry my original "chosen" post was. Here's Take 2.

****

Visualize: "Janey". Her hair is dark, she's got a Master's degree in biochemistry, which is her field of passion. A rockin' job, supportive boss, 6 figure salary. A husband that loves her, one young son. Parents who adore her. I know this woman, and by the way, she has cerebral palsy.

 

Then there is Sandra. Sandra was molested by her own father. She then spent years years abusing herself.  While she did go to school and receive her bachelor's degree, she struggled with alcoholism and drug addiction, "band aids" for her pain, before finally reaching a point in which she could find and receive recovery. Sandra doesn't have a lot of money but is good looking and bright, she doesn't walk in the tell-tale toe-first gait that many with Cerebral Palsy do; on the outside of it all, she is the one who is "whole", the one less pitied.

 

But she's the one who had her spirit, her soul shredded.

 

So tell me, what's a "disability"?

*****

 

There was a pretty ripping birth story that was posted on my Mommy Group Board a while ago, about a mother receiving the extra surprise of Down syndrome, along with her new baby.

 

The thing that kills me is a lot of follow up Mommy comments went along the lines of God choosing "them to be mothers of these special babies…" and stuff like that. You know, God-chosen. Special.


I am deeply in love with God, but I think that's hogwash. What about it makes sense? I do think there is such a thing as 'tests' – things that happen in our lives that provide an opportunity to strengthen, temper our spirits into some stronger stuff. I think it's how we respond to given situations, the choices that we make, that define who we become in the course of our lives. Right?

 

 

Anybody can have a disability (it is, as they say, the only minority group anyone can join at any time!). Everyone is sooner or later affected by disability. Be it their own selves or a family member or friend – I don't care WHO you are, if you are human and if you are alive, you are going to be affected in some way in the course of your life. If you are not already.

 

So what does that make us all? God-chosen? We've all been "touched" by disability (or will be). Why does disability need to be so very 'special'? It's a natural and normal part of the human experience if it does indeed affect us all. Why do we need to say of mothers who have a kid with a disability as being better, stronger, more equipped than mothers of kids without disabilities?

 

This bothers me.

 

It reminds me of a time, years ago, when I visited my Dad in his 5th grade classroom. He had a picture of this kid taped on the wall, who was grinning from ear to ear. The kid was in a power chair, hooked up to all kinds of ventilators. A firefighter was crouching next to the kid.

 

I asked my Dad who the kid was. Dad said he didn't know. So I asked him why he had the picture of the kid taped to the wall. Dad said something along the lines of the kid just being alive! And smiling! Wow!

 

I got pissed and I was like, so, by virtue of the fact that he's in a power chair and using ventilators, we're supposed to be celebrating him, and just in awe that he's smiling? That he's happy? What bullshit! What kind of message are you sending to the kids in your class that go home to loneliness, neglect, misery and poverty? To a parent that beats them? You are saying that because they can walk and don't use a ventilator, everything is okay? That we need to feel sorry for and "inspired" by kids who use power chairs? If we don't know anything at all about their life?

 

Let's think back to Janey and Sandra.

 

What if that kid with a disability – like Janey – has awesome parents that love him to pieces? He'll grow up with every advantage, go to a great school. Graduate and work in a job he loves. Get married, have kids. How stupid is it to assume his life will somehow be less just because he's got a disability? How stupid to assume a life is somehow more or easier because someone doesn't have a disability?

 

My Dad had a hard time understanding what I was saying. Could be because I have such a hard time articulating these thoughts of mine. He thinks I'm angry. I'm not. Really, I'm not. I just don't understand things, don't understand this 'chosen' stuff, don't understand why people need to feel 'inspired' by disability and why things are the way they are.

 

Like a sneeze that you are trying to deflect, I feel a rant coming on. Maybe I can mitigate it down to mini? Just a wee-rant?

 

It's about my pet peeve, The System. We just got the denial letter from Kaiser. A letter that while we were expecting, still comes as a disappointment and slight jolt. Basically, they say that Moxie's physical therapy services are not "medically necessary". I just talked with the Regional Center and they said that they are sending their physical therapist over to assess Moxie. If she isn't delayed more than "33%" (where on earth do they come up with this percentage?), she won't receive services from them either.

 

I'll tell you right now that she won't receive services, unless they fudge the assessment. She's right on target with her 'typical-baby' milestones. She's doing everything that a baby without Ds should be doing, and more.

 

What pisses me off is that it's all set up to be reactive, not proactive. Yeah, gotta wait till your baby is REALLY delayed before we do anything. It's dispiriting, maybe because it's just so dumb. You know what I mean?

 

Looks as if we're going to have to adopt The Book as our Bible. I've already been reading it so much that I feel as if I'm going to have it memorized pretty soon. I guess all of us parents really do turn into our kids primary physical therapist, don't we? Man, oh man am I ever going to miss that Sharon White. She was such a rockstar with Moxie!

 

Sigh.

 

On a happier note, here's little Miss in her hat, in her ERGO

…such a 'gosh, can't you get one with me with my eyes open?' kind of photo, isn't it? Okay, here's another one

*mwah*

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