The Story of Jacob

Matt and I were out to lunch when we had a discussion about when we would be ready to have another baby. We figured we would wait until August so that I would be able to go out on maternity leave at the end of the school year and then be home with the baby all summer. And then a few weeks later I was pregnant with Jacob in JANUARY? I was scared to tell Matt but we were both excited once we realized that I was really pregnant. I quit smoking for the second time and looked forward to being humongous, and I was. Everything has happened just the way it should. Jacob could have had a stroke earlier in the pregnancy and would have been born deformed or worse - he may not have been born at all. We could have missed the first spasm if we had put Jacob down while giving Matthew a bath, but we didn't. We could have dismissed the spasms if my father had not been taking care of Jacob and my stepmother hadn't insisted that we call his pediatrician. If there hadn't been another case of Infantile Spasms in her office a few weeks earlier, Jacob's pediatrician might not have immediately referred us to a neurologist. Jacob's neurologist didn't think that he would respond to the ACTH treatment, but he did. I insisted that Jacob was continuing to have seizures and even though a 72-hour EEG showed no seizure activity, Jacob's neurologist put him on phenobarbitol and the seizures stopped for a short time. I kept insisting that he was having seizures again and after a 6-hour EEG, it was confirmed. Jacob's medication changed to Depakote and after adjusting his dose three times, we asked for a neurosurgical consult. If Jacob's brain had not been so malformed, he would never have been considered for surgery. Jacob's neurologist had said back in the beginning that we might have to consider surgery down the road because the malformed brain tissue was not doing anything good for him. This sat in my mind for all of these months. I knew it was inevitable. Every thought and every action has been about planning for the future while staying grounded in the present. The present is just as it should be. Jacob doesn't know. He uses the sound "be-be" for baby and binky and beep beep and as long as we are in his context he is communicating with us. He waves good-bye and blows kisses to dada in the morning and and asks for "ay" every afternoon (ice cream). As his neurologist said, he has progressed in spite of his brain malformation. I can't even imagine what his life will be like once the naughty brain tissue is behind us. One week to go. I am sure about the surgery but stay up all night thinking about it. I know some of my anxiety is about the risks but I think most of it is about taking care of Jacob after surgery. I feel like I have been able to make things happen for him in terms of therapy and daycare and life in general but the healing process is something that his little body will have to do on its own. I have no control over this. There is no one I can call to raise hell with, no emails to send, no calendar to refer to. No plan. So I have to believe that everything will happen as it should.