4.18.2012

Myth #1- not knowing any different

"He's just fine because he doesn't know any different."

"See?  She's so happy because she doesn't know any different."

I HATE these phrases.  I don't know why people feel the need to say them to me or to their children.  Are they trying to justify what they can't explain?  Does it seem okay to them - as if just being different isn't ok- like they need to rationalize that it is only okay to actually be different if you don't know any better?

Tears are streaming down my face.  Just today, someone asked me what's wrong with my kids.  In front of my kids.  They asked as if my four year old wasn't standing right there, completely aware of the question.  They directed questions at me about genetics and their futures - as if my child didn't exist or couldn't possibly speak for himself.

I hate the term "wrong."  Nothing is "wrong" with them.  They are different.  Not wrong.

I hated to correct her because that's so not my style.  I'll easily correct a five year old who says that but a grown woman?  That's tough for me.

But my kids were there.  And I care far more about what they hear out of their mama's mouth than what anyone else hears or things about me.  And if I didn't correct her in front of them... I would be validating her use of the word "wrong."

So I did it.  I corrected her.

"They aren't wrong.  Just different."  And they are each so perfect for me.

Such a hard day of dealing with realities.  Dealing with seeing my daughter in a medical grade walker for the first time.

Watching her try so hard to walk.

Watching her as I prepare dinner - she scoots out to our patio and then she stares wistfully at her big brother as he runs around playing.

Because that is what kids do.

And she longs to do it too.  I can see it in her face.  She wants to run around and play outside freely too.

And I want to help her.  I would do anything to make that possible.  Yet these people I live with also apparently expect to eat dinner every single night.

She watches her friends toddle around her, climb up to the fort, run and chase each other... she watches.

She may not fully understand differences but her mind?  It knows what is possible and is frustrated when her body doesn't fully cooperate.  And she knows different to an extent - she certainly knows her friends and every other kid in her Sunday school class toddle around.  She does know there are different ways to accomplish tasks than the way her body allows her to move.

She's not happy because she is in some sort of "ignorance is bliss" state.  She's happy because by the grace of God, He has miraculously given her a gift of contentment despite all she endures.  She's happy because she chooses to be happy.  We choose joy.  (usually.)

He daily answers questions, reacts to stares with smiles and pointing fingers with hesitant waves.  Soon, he may realize that I don't stop at certain parks because they are too crowded with strangers and I can't throw him to the wolves. (again.)

Of course he knows he is different.  He figures out how to adjust almost every aspect of his life every single day just to do life "normally."

He doesn't hide at home.  He is out in the world all the time doing activities and making friends and going to preschool.  He knows he is different.  Even in his own home, he notices the differences.  Frequently, we discuss them and remind him he can do anything he wants to ... just differently sometimes.

I know what they mean when they utter those words.  Certainly the words are not said out of meanness.  It's my problem with the words.  They mean to imply that somehow it is easier to go through life as an amputee if one begins life as a congenital amputee rather than an acquired amputee.  As if somehow it is easier to learn to do life differently from the beginning, rather than to have to relearn skills in a new way.

Maybe that's right.  I suppose it is - research supports those statements and doctors and nurses have told me that my kids would have advantages in learning how to do life differently from birth.

But something about hearing it said just rubs me wrong.  It hits a nerve.  I feel raw.

It seems to cheapen what my kids do and who they are.

My kids are fine because they are fine.  Period.

My kids are happy just because they are happy.  Sometimes they are sad.  Sometimes they throw fits.

They are children.  Period.

Please don't minimize what my children experience.  Please don't invalidate their challenges and heartaches and victories.

They do know different.  They see it every day - on television, in our world, on movies, playing with their friends, at school, at church, at the zoo, on playgrounds, at the grocery store, gathered with family under the Christmas tree, on vacation.  Of course they see that most people on this planet do not have limb differences or joints that struggle to move.  They do know different.

We just choose to embrace the different and call it normal.   We choose joy.

We are just fine, thank you very much.

4 thoughts:

ywilbur said...

I so know this feeling! My sister is great and loves Kharan but she drives me crazy saying that 'he doesn't know any different'. She also attributes so greatness to him just because he is 'different'. She says things like 'it is just so cool he can do x, y, and z' or 'I want him to meet my friend so they can see how he can do x, y, and z'. He's a kid. He doesn't want to impress you and your friends and yes he knows he's different. Grrr... My sister expressed disappointment once when Kharan was taking a picture with a local celebrity that he hid his hands because 'too bad he hid his hands or maybe he would have gotten invited to locker room huh?' When I asked Kharan later he said 'I didn't want him to worry about me'....aka he wants to be like other kids and not treated different just because he is missing limbs.

ywilbur said...

I so know this feeling! My sister is great and loves Kharan but she drives me crazy saying that 'he doesn't know any different'. She also attributes so greatness to him just because he is 'different'. She says things like 'it is just so cool he can do x, y, and z' or 'I want him to meet my friend so they can see how he can do x, y, and z'. He's a kid. He doesn't want to impress you and your friends and yes he knows he's different. Grrr... My sister expressed disappointment once when Kharan was taking a picture with a local celebrity that he hid his hands because 'too bad he hid his hands or maybe he would have gotten invited to locker room huh?' When I asked Kharan later he said 'I didn't want him to worry about me'....aka he wants to be like other kids and not treated different just because he is missing limbs.

Mike and Christie said...

We have been quoted those statistics before too. I comprehend that if somebody had learned to use arms and legs their entire life, and then had to have them amputated, they would not be in the same spot, as a person who had missing limbs in the first place. Or in our son's case, cerebral palsy.
But you are correct! This should NOT diminish the amount of work it takes to do normal things, OR the heartache each person feels when being diminished by another person.

Maybe, JUST MAYBE the person who is a new amputee, isn't having a HARDER TIME, but for the FIRST time is experiencing our kid's "normal", and they DON'T like it, and they DIDN'T realize JUST HOW HARD IT IS, every day; each and EVERY day!
And they need to learn how to choose joy too.

Sometimes, we pass those parks too.
And oh my do toddlers ever know!
Our Tim got fiery mad when his baby brother started walking.... He didn't walk independently until he was almost 8. (without assistance)
It was HARD on him.

Colette Du Toit said...

I'm not quite sure what to type without sounding a little bit like a stalker, but I recently started following your blog after the city of Tyler posted one of your posts on their facebook page. I love reading your thoughts and seeing your pictures, even though I don't know you. You are a fantastic mother and your faith in God is very admirable and your children are beautiful. I type all this to say that just this past Wednesday, I saw you at the zoo. I recognized you and your little ones from your pictures and wanted very badly to say hello, but I wasn't sure how to approach a complete stranger whose blog I was following. SO I'll just type here what I wanted to tell you then: I love your blog. Keep up the amazing work! May God bless you and your family richly!

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