We found out on December 18, 2008 that out baby boy would be born with a fatal defect called Anencephaly. I was 18 weeks pregnant.We were so upset. It was very unexpected. I had never heard of it before that day. I knew this was the beginning of a change in my life. So many things ran through my head. Was I going to be ok? How was I going to take this diagnosis? How was this going to affect the rest of my pregnancy? I knew it was going to be difficult, but I chose to carry my baby to term. Not because it was the right thing to do, but because I already loved my baby and no matter what, he is still mine. Well now we are down to 3 weeks left until delivery and I am soooo nervous. I want to have lots of time with him, but I know that it is not a promise. And as each day gets closer I get more scared, more nervous, and more sad. I am scared of after he passes. How will I react when people ask " how is your baby" or "Where is your baby" but I know that carrying him to term wasthe best decision I could have made, because atleast my husband, daughter, and I will get to meet and greet him before he leaves to go to heaven.
The song I live by...
"Praise You In This Storm" I was sure by now God You would have reached down And wiped our tears away Stepped in and saved the day But once again, I say "Amen", and it's still raining As the thunder rolls I barely hear Your whisper through the rain "I'm with you"And as Your mercy falls I raise my hands and praise the God who gives And takes away And I'll praise You in this storm And I will lift my hands For You are who You are No matter where I am And every tear I've cried You hold in Your hand You never left my side And though my heart is torn I will praise You in this storm I remember whenI stumbled in the wind You heard my cry to you And you raised me up again My strength is almost gone How can I carry on If I can't find You But as the thunder rolls I barely hear You whisper through the rain "I'm with you" And as Your mercy falls I raise my hands and praise the God who gives And takes away lift my eyes unto the hills Where does my help come from? My help comes from the Lord The Maker of Heaven and Earth
thanks Celia!
Don't be mad if I cry It just hurts so bad sometimes 'Cause everyday it's sinking in And I have to say goodbye all over again You know I bet it feels good To have the weight of this world Off Your shoulders now I'm dreaming of the day When I'm finally there with You Save a place for me, save a place for me I'll be there soon, I'll be there soon Save a place for me, save some grace for me I'll be there soon, I'll be there soon I have asked the questions why But I guess the answer's for another time So instead I'll pray with every tear And be thankful for the time I had You here So You just save a place for me, save a place for me I'll be there soon, I'll be there soon Save a place for me, save some grace for me I'll be there soon, I'll be there I wanna live my life just like You did And make the most of my time just like You did And I wanna make my home up in the sky Just like You did, oh, but until I get there Until I get there Just save a place for me, save a place for me 'Cause I will be there soon Save a place for me, save a place for me I'll be there soon, I'll be there soon Don't be mad if I cry It just hurts so bad
What is Anencephaly?
Anencephaly is a defect in the closure of the neural tube during fetal development. The neural tube is a narrow channel that folds and closes between the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the embryo. Anencephaly occurs when the "cephalic" or head end of the neural tube fails to close, resulting in the absence of a major portion of the brain, skull, and scalp. Infants with this disorder are born without a forebrain (the front part of the brain) and a cerebrum (the thinking and coordinating part of the brain). The remaining brain tissue is often exposed--not covered by bone or skin. A baby born with anencephaly is usually blind, deaf, unconscious, and unable to feel pain. Although some individuals with anencephaly may be born with a rudimentary brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions such as breathing and responses to sound or touch may occur.
I'm Misty. I'm having a baby boy with Anencephaly beginning of May, scheduled c-section as well. I'll be following your story. God bless you.
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