Wednesday, July 22, 2009

On Suffering

I don’t think of suffering when I look at my pretty girl. But you do.

Don’t feel bad. It isn’t your fault. The dictionary tells you that to suffer is... “to endure pain, disability, death, etc., patiently or willingly.” dictionary.com

Down syndrome is a disability, isn’t it? And Kimani seems to be willingly enduring it.

I took my child to her pediatrician and while there had the doctor complete some paperwork that included my daughter’s diagnosis. The doctor wrote, “Down Syndrome” on the line and then in the part for a description of the symptoms, she wrote, “developmental delay.”

Huh, that’s it. My girl is slow to learn things. This is considered suffering in our society.. a culture that values the intellectually and physically fittest above all. And here I thought we were simply a beauty obsessed culture.



Too bad we’re not because she surely is gorgeous. A face made of all the pretty things we prize the most, particularly facial symmetry. With sparkling blue eyes and a dainty nose and rosebud lips she is perfection.. oh no wait.. those eyes, if you look close, if you stare at them long enough you can see it. The slight tilt gives it away... her suffering.

When she was newly minted, a mere two weeks old, I wrote in my journal “And yet she does not seem to be suffering. It is me who is hurting and scared.” And so it remains today.

The suffering is mine and yours.



Note: I could have linked the "you do" to numerous places but I chose this one because it makes me even sadder to know that fellow Christians think this way about my child.

20 comments:

Jasmine said...

I love her. You touch my heart with your writing. I am so happy I have found your blog. I don't see sadness when I look closely at her eyes and the slight tilt of them. I see the most incredible journey you and she will ever have. In her eyes are miracles waiting to happen. Much love xoxox

L.L. Barkat said...

As usual, you silence me.

Beth said...

Now that is one delicious, beautiful baby. And a strong and intelligent Momma.

Lacey said...

Amen, I went to that site. Good for you for leaving messages. I only read a few because I get so sick of people being so ignorant. The funny thing is, when people see my Jax, they never notice the down syndrome, they notice his tubes and ask is he will be ok. All of this medical stuff is from the DS, but people always say how retarded they are. THEY ARE NORMAL CHILDREN PEOPLE.

Sandy's Show & Tell Quilts said...

Thank you for writing. You have a beautiful daughter!

Anonymous said...

I'm happy to report that the website "pray4trig" disappeared :)

Anonymous said...

sorry!, the website is back, looks like it was having technical difficulties ;(. It may disappear soon...

My name is Sarah said...

Beautifully written.

Sasha said...

You have a great site and a beautiful little girl. I looked at some of your posts and they are real and inspiring.

Anne L.B. said...

I don't think suffering. I see a beautiful child who will remain innocent of much sin and suffering which the developed adults must confront.

starrlife said...

She is truly gorgeous! I love the speckles in the eyes, don't you!

Lisa said...

Loved your response... so glad to have found your blog and that you represented the Oz Squad so well!

Harlow said...
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TUC said...

Harlow,

Thank you for your "wasted teenager with no children" point of view on life. And you are right, kids like you can be very cruel.

Harlow said...
This comment has been removed by the author.
TUC said...

Be sure to check back in twenty years from now to let us all know how that works out for you.

Anonymous said...
This comment has been removed by a blog administrator.
Anne L.B. said...

Lord, I do thank you for the gorgeous baby girl with whom You've blessed the world, and my life personally, by her serenity and charm. I thank You for every child to whom You've given that extra chromosone, as an opportunity to manifest Your grace. And I ask for TUC the extra measure of grace to deal with any extra measure of hardship she will endure, not at the qualities in her daughter which others see as shortcomings, but to endure the words of those who do not understand Your methods of blessing. I ask Your grace for them as well.

I thank You Lord for every moment of hardship in my life that has increased my dependence on You, my faith in You, and my love for You.

Anne L.B. said...

And Lord, I also thank You for my sister Rose Helene, who had that extra chromosone. I ask you to give her an extra kiss for me today, and tell her how much eternity is blessed by her, and how much I look forward to seeing her, and how much I wish she'd stayed around here longer than You saw fit.

Alicia said...

I was reading though your blog and came across this post and went and read the site about praying for trig, it makes me ... ugh... but yes God is big, and yes God can make miracles, dont know why they are looking for THAT miracle, if other miracles come across everyday sigh

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