We are still in shock and we are praying for a miracle. We have had many sleepless nights and are still just really confused. I think most people expect us to be angry with God, but we are not. We are so thankful God has given us this precious child. He has trusted us with so much and since the beginning we have promised to share our gift and give God all the glory. Although our hearts are completely shattered, we will not give up. This is just another journey. It is going to be a journey through a very unknown land. Neither Brandon or myself know much about the brain. Being a nurse I know some of the anatomy and a few things, but absolutely nothing about the septum pellicidum or absence of the septum pellicidum. I have done some research on my own and it seems like there is a wide spectrum of living without a septum pellicidum. Some children do not live past birth, some are in a vegetative state and some are mentally stable and live without any impairments what so ever. A lot of the things I have researched about it do not apply to Carter. In fact the only thing I have read that may apply to Carter is it can affect speech. The only real delay Carter has now is speech. He is still really struggling to talk although he is trying really hard. He understands everything we say to him and can even sometimes answer with sign language. He communicates, but he just does not talk. It kills me to think that he could want to say something and honestly not have the ability to say it. I have had a hard time finding a lot of information on the absence of the septum pellicidum and am looking forward to hearing from Carter's neurosurgeon at Johns Hopkins. So for now we will wait to hear from him. We have so many questions. I don't want to say anything for sure until I hear from him and get his opinion. Honestly all we know right now are the interpretations from the radiologist that performed the MRI.
We have known about it for a little bit now, but decided on processing it before telling anyone. No matter how hard all of this gets we will always love Carter with our entire hearts and we will both do whatever it takes to get him the best care possible. I know it might sound crazy, but I think things like this just make me love him even more. They make me realize just how special God really made him. If the MRI results are correct this means that Carter has survived 2, almost 2 1/2 years, with cloacal exstrophy and missing an area of his brain. As a mother who has been at his bedside through it all I just don't see how it can be possible. We are completely hurt, lost and confused for Carter. I am so hurt that he has to go through something else. I know God has a plan, but I would be lying if i said i did not want this for my child. He is such a sweet baby. He NEVER cries and loves life. He does not deserve this. No matter how hurt his little body may be God has him in his hands and we will continue to praise him for ALL of the blessings he has given us. Please pray for peace and patience as we wait to hear from Johns Hopkins. Thank you all so much for all of your prayers and as always.. To Him be the Glory!
