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Friday, September 24, 2010

Blinded

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Yesterday I had to listen to the news that about 85 percent of my niece's brain is damaged — that even if she survives this first year, there's a good chance she won't be able to walk, talk, comprehend much or eat solid foods — and suddenly the world tilts and I feel sort of outside my body and trapped at the same time, like I'm watching a horrible movie that's going to last for hours, for days, for years, and no matter how hard I try, I can't leave the theater.

You hear the doctors say things like, "usually the mother will miscarry a child with this type of defect during the first trimester" and you have no clue what you're supposed to do with that information. They tell you, in so many words, that this baby is a biological mistake. They tell you the next step is genetic counseling, and you kind of want to say, "Isn't it too late for that?" They tell you the blinding truth and you want to close your eyes and beg them to lie.

This is not even my child, but hey, hey, hey, it takes a village and all that, so I watch my baby brother try to look strong as he hears that his daughter will need special care for the rest of her life, that he may never really know her mind, that eventually she will need cosmetic surgery to save her face. I watch my father crumble like a defeated giant and cry tears I never knew he had. I watch my mother storm the Internet to hunt down multisyllabic words like holoprosencephaly and microcephaly and then print and print and print everything she can find, as if she can print it all away, print it out of the universe, hunt it down and smear it with ink and rip it to shreds and throw it away and start all over with a fresh sheet of paper. Our kitchen has suddenly become a medical library. Our kitchen is sinking into an ocean of rotten syllables.

And meanwhile you shift from first to second to third person. You can't find a place and you can't find a voice and you can't find a perspective and you're thinking, "After this day, nothing is ever going to be the same." You will look back on this day and mark it with red ink and call it "The Day Everything Changed."

I want to do something but I can't. There's a selfish part of me that wants to say, "This does not have to be my life this does not have to touch my life this does not have to shape my life" and get in my car and drive and drive and drive far away from here. Instead I wait in the suffocating darkness and watch the clock as the night slides by and wonder what the hell we're all supposed to do when the sun comes up.

I log in because I need to do something with my hands and I get a message telling me that I need to download a new version of the viewer, that I cannot enter until I download a new viewer, that nothing will work until I download a new viewer, like the whole damn universe is suddenly saying, "No."

When I finally get in, my Windlight settings are all jacked up and it's so piercingly bright that the light hurts my eyes.

I can't see.

22 comments:

Carrie Lexington said...

Emerald, my thoughts and prayers are with you and your family.

xoxo,

Carrie

Chestnut Rau said...

Em there are simply no words to convey how sorry I am for you and your family.

LisaMun Aronowicz said...

oh Emerald, I don't know what to say, just praying for you and your family...always...hugsssssssss

Heidi Halberstadt said...

I have no words to tell you how sorry I am.

Selkie said...

((((((hugs))))))

Layne Jewell said...

I have been a long time reader of your blog. I am so sorry to hear what you are going through. I wanted to tell you though that 6 years ago my best friend gave birth to her baby 5 months early. He was 1 lb 3oz. They told her that his brain hadn't fully developed and prolly wouldn't to full capacity because all the problems this little guy was having. They told her then he would have retardation and would not live a normal life like kids his own age. After 8 months he was released from the hospital. they said he would be a special needs child and set her up with all the rehab and junk. 6 years later he is walking and watching toons just like every kid his age. Sure he has had some problems here and there but it was nothing like the doctors told her it would be. I always reminded her not to put to much stock in doctor.They are paid to see the worse case scenario. I believe it was love and prayers that helped this little boy out.
I do wish you and your family the best. I will pray for peace and understanding for the family and healing for the little one.

Whispers said...

Thoughts and prayers going out to you and your family. I am so soo sorry!

Sophia Harlow said...

Oh E,

My heart breaks.

ILY- R

Leah McCullough said...

i'm still crying after reading your post... i'll keep you all in my prayers.... I know we dont know each other, but you mean a lot to Soph and if you need anything IM me
hugs you tight Leah

Banana Vella said...

Hugs Emerald, and my prayers are with you and your family

Banana xx

Tashi Core said...

The dear little girl still needs your family to be strong for her. We will all pray for her too.

Take care,
Tashi

♪ Guenevere ♪ said...

After so many miracles I've seen over the years and those who are willing to fight the odds, I think your niece will somehow be able to beat the odds and surprise everyone.

Our love goes out to you and your family. <3

Joonie said...

I'm so sorry, Emerald. *hugs*

Quaintly Tuqiri said...

I am sorry Em... I hope though that all these worst-case scenarios won't come true. Doctors can't factor in love and attention and care and the will to succeed. *hugs*

IndiaRose said...

Oh Em, I am so, so very sorry to hear this news. My heart goes out to you and your family.

India

Deoridhe said...

My thoughts and compassion are with you and your family.

((( hugs )))

Meara Deschanel said...

I'm so sorry Em. Please know that you're loved. *hugs*

Aisuru Rieko said...

oh Em. I'm so sorry.

Ima Peccable said...

Everyone else has already said what I feel, especially Layne and Tashi.

Eva Bonner said...

Em what heartrendering news for you and your family. I pray that you will have the strength to bear the pain and do what must be done. Remember that miracles happen every day!!

Mattie Rae said...

I am also at a loss for words...tears and hugs and prayers for you and your family...

Trin Trevellion said...

http://www.youtube.com/watch?v=8rluU6BGpKw