Anyone who has a kid with any kind of issue spends their life watching and waiting. You second guess choices you made, you analyze your child and watch how they act, talk, behave, etc. It is an exhausting process and often frightening as you watch your child grow and you try to adapt.
For us, our journey into the grand unknown started early with Haven, when she was only two days old. That was the day the pediatrician came in and told us that her heart sounded funny and we were being released to head straight to the cardiologist. While still reeling from her cardiac diagnosis, we found that she had severe reflux. A year went by and she never outgrew the reflux and we took many trips to the gastroenterologist to determine the issues with her stomach. She was anemic. She wasn't gaining weight. She never crawled but walked at 9 months and spoke in full sentences around the same time. She was a precocious speaker early on, we found it cute. At 18 months she reacted to a cake with almonds in it, we stopped all nuts but continued to feed her stone fruits not knowing any better. At age five we took her to the allergist where she went into shock during her skin test and I stood there and watched her vomiting and losing her breath, walking way too close to death before my eyes. We learned what not to feed her, took a deep breath and sent her to kindergarten so she could grow and learn. But she didn't learn. She struggled to read. She struggled to write. By the summer before third grade she had become so internalized and behaved so strangely that we thought she had a brain tumor, but the neurologist discovered she had epilepsy. We started meds and she seemed better, she was learning and functioning but struggled to process the vast amount of information she was now receiving, so we began meds for ADHD. She was better, she began to excel in school, she caught up and passed grade level in many subjects and still struggled in others, but still problems remained, different problems.
We know, deep down inside, that there is something more going on. Haven knows too since she tells us how she feels and what she sees going on around her. We had hoped that these quirks were leftover from the years of seizures, in fact I still hold onto that hope, but I also know that every time I suspected something, I was right, and this is one time I don't want to be right. So we begin again, we make the calls and we document everything and we start on a brand new path, because our goal has never changed. When we are done raising her and send her into the world, she will be a respectable and responsible adult, she will be able to provide and care for herself and she will have people in her life that love and care for her and that she loves and cares for. We will make it.