Monday, September 26, 2011


Since I haven't posted in a while I thought I would catch everyone up.

Eva was discharged from the hospital, it was a long awaited day and it felt amazing. To have her in our home, to be able to lay in bed with our daughter. Hold her, kiss her, and just feel her there. It felt amazing. But yet AGAIN it was short lived. She just about a week after being home had to get life flighted back to Pittsburgh, Pa. I felt numb, I really couldn't get upset, break down. It seemed so familiar- that it almost didn't feel real. Like I had done this so many times- so I did as I have always done. Front seat on the shopper- escort Eva to the NICU. (Yes the NICU still takes her, think she has reserved a room until she is one)- Say hello to our favorite nurses- show her off to the doctors. See how big she is, IN JUST A WEEK?!?

The doctor's laugh but they wonder why, why is she back? They have exhausted all they can on her. And she is back?

But luckily this time, it was pneumonia. Fixable. Scary. But fixable. So 4 days in the NICU and we head home again. This time the excitement isn't there, I'm waiting for the next chopper ride home. Home being the NICU.
However, much to our surprise; Eva has behaved. A ER visit but nothing to bad! Being a mom finally starts to sink in, I get to wake up to her smiling face, fall asleep with her being the last kisses I got.

Now, once things finally seem to be ok, they are the furthest they have been in years.

A normal blood work up, just routine revels.. a problem in her normal white blood cells.

Why would God let her fight through 7 months of pure hell, and pain just to give her this? It’s not fair! The doctor’s say they will double check—which is hell as well. I hate seeing Eva poked, stabbed, cut, cry. When she has never hurt anyone, she didn’t deserve this. Why can’t I take her place, I’d be happy to take her place. Just to give her one day, ONE DAY; as a baby. A BABY! Not a suffering, soul. I think about all the holes, stiches, bruises, scars, pain she lives with each day. I hope to God, he will bless me with half the strength she has.

So again, here we lye in desperation. Begging, pleading, PLEASE let our baby be. She has never lived one day not struggling to breath, fighting to survive, she won’t get to hear herself sing, she’ll never get rid of the cut in her throat. She may never get to dance, or ride a bike.

As a mother how do you look at your daughter, knowing that she hurts and struggles everyday? When she smiles, you can see so much love and happiness. But you can see the pain and suffering in her face. A face that is begging you- please help me. And there is nothing you can do. You try your best, and love her like no other. But for a cure- you’re desperate.

1 comment:

  1. I'm so sorry Anya. I know our stories are so different but I do understand parts of it. Watching the needles and tests and SO many scars; it break your heart. Stay strong! Eva looks to you and loves you so much. I know it's hard and it's okay to break down. I won't say " I don't know how you do it" because I do know. Love to you all and strength and prayers.