Wednesday, April 4, 2007

Julia Roberts is in town...

She's making a film out in Bastrop.
Do I have anything in common with her? Well yes, we both have twins
Do I envy her? Well sure, I'd like to have her money.
Am I filled with the middle-american desire to be Julia? Well no, I like being me.

BUT, the other day I saw her photo in a rag-mag that was thrown in the trash by our nanny - it was the back of her head and peering over her shoulder was her adorable wide-eyed daughter Hazel. It struck a chord. My daughter is a twin and she is absolutely adorable. But she is not wide-eyed. Actually more often than not, Zelda has her head down and her eyes almost closed. They are like slits. She has micro-opthalmia. Her right eye is smaller than her left. Interestingly enough, most doctors have said that her right eye is her "good" eye - the one with hope. At this point who knows...I operate under the premise that I'll know if/what she can see when she can tell us.

Besides being premature and born with congential toxoplasmosis, Zelda was born with dysplastic and detached retinas. Was it a result of ROP due to her prematurity? Was it a result of the toxo? No one can tell us. All I know is that one day in the NICU, the haneous eye doctor from hell said "your daughter's eyes still look hazy" "we can't see in and therefore she can't see out" "oh, and by the way, your daughter is blind and she'll never be able to see." WHAT???
He was so hideously cavalier about the whole thing, I just wanted to scream. And later I did. I screamed, I cried, I even prayed...well, sort of.
We had so many questions. Why hadn't they seen this sooner? Why was the doctor such an arrogant ass? Could she have surgery? Would she ever be able to see? Can one take lessons on how to tell a parent that their baby is blind? Can we enroll AA (arrogant ass) doctor in the class?

We immediately phoned the Oracle - our guide through the world of toxoplasmosis - Dr Rima McLeod at the University of Chicago. More on her later. She recommended that we contact Dr Khaled Tawansy, a pediatric eye surgeon in California. The wheels were set in motion and thanks to the amazingly dedicated neonatologist Dr Peter Haney at Texas Children's Hospital, a transport jet was arranged to take Zelda and Evan to Pasadena, CA. They spent a month out there at Huntington Memorial Hospital and Zelda underwent various procedures and surgeries to remove her lenses (lensectomy) and the clear the vitreous (vitrectomy) in her little eyes. We later returned last summer and both she and Creed had another procedure to keep their eyes healthy. We will return again in the upcoming months to see Dr Tawansy for yet more work and consultation on the state of Zelda's eyes.

So back to Julia...I look at the photo of the movie star and her wide-eyed twin and I want my little girl to have her eyes wide-open and seeing. Sometimes it makes me sad but most of the time I am in awe - not only of feisty, resilient Zelda who walks forward without fear but also of her brother, the smiley, silly Creed. They are toddlers, completely different individuals learning to go through life in their own way. Who says that one "view" or lack of is better than the other?

Creed is starting to jump and run, Zelda is too.
They are just doing it differently.

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