Frustrated

When it comes to medical diagnoses, have you ever felt like you've been lied to? Maybe lied isn't the right word....misled may be a more accurate description. This is exactly how I feel today.

Many friends and family had told me not to go online and look up information on the absence of the corpus callosum (aka. Agenesis of the Corpus Callosum). They said it would just make me scared and worry more. However, I want you to show me one mother out there, who wouldn't want to be educated and feel prepared for any birth defect that her child might have. I feel like with the more information I can have regarding this defect, then I will know what questions to ask and what to expect throughout the remainder of the pregnancy. The way I see it, I can either hide from the information that is out there and live in the wonderful world of the unknown, or I can educate myself completely on this and be prepared with all of the necessary tools/doctors/therapies that are available.

So, today I decided to take a look online. I found case studies, medical journals, medical research, support sites, etc. The more I found, the angrier I became. As I look back, I feel that the doctor who gave us the diagnosis and explained it to us, gave us a very watered-dow version. And when I asked the specific question of how this would affect the baby mentally, I was given the answer "not at all." From what I have read today, this is a complete distruth.

Don't get me wrong...my faith in the outcome of this baby has not changed. I still have complete faith that God is in control. But, I don't think God expects us to sit back, doing nothing. Even though he is in control of the situation, I still feel I have responsibilities as well. Just because you are pregnant and know God will take care of the baby, doesn't mean you don't still have to take prenatal vitamins and take care of yourself, right? So I feel that it is my responsibility to know as much as I can and get the right treatment both prenatally, and postnatally.

So, after my readings today, I am frustrated. I want to know why the other tests that are available to help diagnose this problem haven't been ordered. I want to know why the doctor didn't give us a realistic view of what life for this baby could be like. If the affects from this defect have a large spectrum of symptoms, I want to know whether other areas of the brain have already been affected or not....I have so many questions.

Jamie and I so much appreciate all of the wonderful support we have been receiving from friends and family. Prayers are still very much appreciated because miracles DO happen. Please bear with me as I struggle between being "okay and accepting" of the diagnosis to being "frustrated and confused."

For now, I will continue praying and trusting in the Lord to know and be in charge of what is going to come, with the baby, with our family, with our future.