Wednesday, January 28, 2015

The Ticking Timebomb They Sent Home from the Hospital


I'm sure no one thought that when they stuffed the folders at the hospital to send home with new parents they were placing in those folders a time bomb.  

Tick...tick...tick...

A free ninety days (or something like that) of a life insurance policy for your baby named after a popular baby food brand.

Tick...tick...tick...

We took our folder and our baby home, having just learned that she had something wrong with her eyes called aniridia (lack of iris in the eye) and that she might have a rare disease called WAGR Syndrome.

Tick...tick...tick...

WAGR...W~Wilms Tumor (Kidney Cancer), A~Aniridia (Possible Glaucoma, Cataracts, Blindness, and more...), G~Genitourinary Abnormalities, R~Range of Developmental Delays.

Tick...tick...tick...

We were told by our doctor that babies normally eat, sleep, and poop.  If our little girl was doing that, we were just fine.  In the meantime, we were waiting for the results of her genetic testing to confirm or lay to rest the theory that our lives were about to change dramatically.

Tick...tick...tick...

One day, I decided to go through the folder from the hospital.  My maternity leave was filled with fear; I was learning to be a mom for the first time, but at the same time, I was afraid that our baby wouldn't grow old enough to even wear an 18 month sized dress we had received as a gift.  I kept myself as busy as I could, and even filled out the flimsy leaflet that was the application for the life insurance plan with a perfect baby face on the front of it.
"List any health conditions the baby has..." it said...

"Aniridia and possibly WAGR Syndrome" I wrote...
Wasn't I naive?

Tick...tick...tick...

A letter arrives in the mail with a perfect baby face on the front, and the perfect baby lips shaped so naturally I could almost hear the coo.
"We regret to inform you that your baby doesn't qualify..."
Tick...tick...tick...
"This by no means is any indication that we don't believe your child will live a healthy life..."
Kaboom...

...This is life with a rare disease...
...This is life when you feel you may be the only ones...
...This is life before we found the International WAGR Syndrome Association...
...And this is why I, from that day forward, refer to the "anonymous" company's insurance policy as the "Blankety-Blank Throw Up Plan"...

BTW, Blankety-Blank Company, she's 10 (and a HALF) now!


2 comments:

  1. And she is beautiful and whenever I see her at school, she is shining brightly for all to see!

    ReplyDelete
    Replies
    1. Thank you, Kristen! She does shine! I didn't realize when I named her that Evelyn means Living Light. How perfect!

      Delete

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