The story of our journey through pregnancy, birth and life of my son Emery who was diagnosed with Anecenephaly. Anecenephaly is a neural tube defect that effects 1 in 10,000 pregnancies and is fatal to all babies who have it. Most die before or during birth, some can live for a few hours to few days, and very very few live for longer periods of time. I do not know where this journey will bring us but I want to give my son the best possible life he can have and enjoy all the time we have.
Monday, November 5, 2012
What is real?
It is hard enough to really realize that you are having a baby. Things like a baby shower, and arranging a nursery help but its an unreal experience to grasp. For months after I had my daughter I would sit back and suddenly think wow I am really a mom. It is such a lifestyle change it rocks your whole universe and changes the reality you knew. So this pregnancy? How can I grasp reality of my son being born when I have the reality of his looming death as well. I haven't experienced death of someone close to me, and now that I do it has to be my son, my own flesh and blood. This precious baby I never got to know as a person, to watch him learn or grow will be gone in an instant. I still have days where it seems almost impossible to believe I am having a son. Even typing those words seem wrong, and so foreign to me. I am having a son. I will have one daughter and one son in just a matter of weeks. It feels strange that nothing is "ready" for him to be here, and then I remember what types of things I need. He needs a blanket and an outfit. He has a stuffed dog we got him when I found out I was pregnant and a lion rattle my daughter got him. I have talked to a photographer and funeral home. I have as much planned with the doctors as possible. Its unreal that this is how I have to plan for my son's arrival. I wish I could decorate a nursery that he could sleep in. And buy a billion cute outfits to wear. I wish that I didn't have to plan a zillion pictures to remember the few short moments in time I will have with him. It all seems impossible to believe. How did this become my life? My son's life? It is hard to imagine my hello will also mean goodbye.
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