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Tuesday, February 12, 2013

Congenital Heart Defect Week

This week is Congenital Heart Defect Week - from February 7th to February 14th. It's a time to remember our losses and keep rooting for our survivors, focusing on bringing awareness to the super high number of babies born with CHDs. Ironically, it is also the two year anniversary of my family being made accutely and painfully aware of the reality of heart defects.
   I have to say, I don't know why but in the course of my own grieving I have never been drawn much into the CHD Awareness movement. I don't care to push laws that require every baby to be tested after birth, for example. After losing my own little girl without having the option to operate, I still don't know for certain that I would have chosen to do so... It really seems that what happened with Phoebe and what happened with our family was simply and exactly the way it was supposed to have happened. Of course, I would never dream of judging another family's decisions surrounding such an unfortunate turn of affairs. My family's experience with our loss was perfect, beautiful, flawless. She came into the world and left it quickly and sweetly, surrounded by people who loved her.  Two years after being jolted into awareness by a cold, hard, fact of nature, I spend this week proudly going over many difficult, precious memories. I feel peaceful.

     I think I've told this story here before, but I'm telling it again yall! This blog is actually a designated place for me to heal; a place to remember and get things out. I have found that in these two years I have to tell and retell and retell my story....even still, it takes my breath away and makes me feel stunned.

    February 14th, 2011: We were told to go to a specialist when I got an ultrasound at the ER that suggested there may be something wrong with the baby's heart. The doctor at the ER said, "Your baby may end up with Down's syndrome..." I am still not sure why she said that or where she got that, but that was it, and when I went to the specialist Paul didn't come - so confident were we that there couldn't be anything terribly wrong, and if the baby was diagnosed with Down's Syndrom we would have been ready to accept that lovingly.
    But the worst case scenario happened, I couldn't stop it. An ultrasound tech looking hard, looking and looking at the pulsing heart...then another tech came in to see it too....then the Top Dog, the ultrasound guru, was summoned into that dark room. So many new faces, all of them worried and sad, but nobody wanting to be the one to say why. Then slowly one of the techs handed me a box of tissues. Dr. T said in a very straight-foward way, "The baby has a very serious heart defect. The most serious we know of. Babies with this defect may be operated on shortly after birth, but most do not survive."


It was a two hour drive home and I spent that time reflecting on the situation....I saw that we'd been given a special task, a very special little person, and that it would not be an easy road ahead. But even then there was that undeniable presence, Holy and comforting, right beside me. Never in my life have I felt God so near as during that pregnancy and that day Phoebe was born. I still truly believe that what happened, in normal English, is that God said, "I know this is going to suck, but I want this baby - your baby - and there is no other family who can bring your baby here except for you guys, so just trudge on ahead and I will help as help is needed."

The memory is still heavy on my heart and still gets caught in my throat and burns my still sometimes drives me practically crazy that a daughter was dangled in front of my face only to be taken before we even got to find out if she would have been a trouble maker like me. The main difference between now and two years ago when it all began to happen is that now I feel very proud of the whole experience, and when it hurts really bad it's a good kind of hurt because of how proud I feel to have been given that difficult job and to have done it well.

Rest peacefully Phoebe.