When I was pregnant with Nicholas, I worried all the time that he was going to die. I worried that he wouldn't make it out of me alive. I worried that something would go horribly wrong during delivery and he would die. I worried that he would come out and we would discover that he wasn't whole - that there was something terribly wrong. Then, when he was born - on time, with all his fingers and toes in a relatively easy birth - I worried that he wouldn't make it through his first year. Maybe he would never learn to nurse and he would starve to death - or have to eat formula (eek!). Maybe he would roll off my bed and crack his skull open and die right in front of me. The list of possible accident scenarios seemed endless. And then, one day, driving to work, when he was about a year old, I realized that I no longer worried that he was going to die. It just wasn't on my mind anymore. He had made it to a year and somehow it seemed to me that he was going to be ok. He didn't seem to have anything really wrong with him - he could see, he could hear, he could move (and man, could he move!), he could talk and engage. He was fine and we were safe.
And, for all reasonable purposes he is still fine and safe. But, we have begun to understand, slowly over the last two years, but more critically and in a more focused way in the last few months, that Nicholas has a pretty serious emotional disorder relating to extreme anxiety. Looking back, I can see it in all sorts of things that he did as a little kid, but they were so minute and I was so inexperienced, that I didn't really note them as being unusual or alarming. But, now, as he gets bigger, the symptoms are unusual and alarming. His anxiety is so overwhelming for him, often resulting in long episodes in which he loops through extreme emotions - anger, fear, violence, giggling/euphoria, back to anger and fear again. It is almost like watching someone have a seizure. The episodes are random and can be triggered by any number of things. Rick and I are pretty good at catching them in advance - heading them off at the pass, so to speak - and minimizing the impact on Nicholas and those around him. However, our ability to do that has tapered off in recent weeks and we often find ourselves powerless to help him, except to sit with him and console him as he asks, "Why is this happening to me? What is wrong with me?"
We've had him in counseling for the last year, but it is clear to us now that weekly play therapy sessions and occasional visits to a non-engaged psychiatrist are not enough. Last week we had him evaluated at the
NYU Child Study Center, a place that specializes in treating children with a variety of mental and emotional disorders. They have a team of psychiatrists and psychologists and will be able to create a plan just for Nicholas and our family, so that we will all learn how to help him. I am confident that in the long term, Nicholas will be a thriving, healthy, and successful member of society. It will not be an easy journey, and there is no quick fix, but I do believe that it will happen.
In the meantime, I feel like I have a newborn again. All the randomness of life with a newborn is present in my life. I never know from moment to moment what is going to happen. I can't be confident that our family will follow through with plans that we've made - a difficult episode for Nicholas might prevent us from even leaving the house or require that we all leave an event to help calm him. Even when Rick and I have plans to go out, we can't be sure that Nicholas will be stable enough for a babysitter to care for him - meaning that every event is subject to cancellation at the last minute.
I feel like I have fallen down
Maslow's hierarchy of needs. I'm reasonably sure that at one point in my life I was at Self-actualization, but now I am hovering somewhere between Safety and Physiological. There are some days that I'm not even sure how I am going to put dinner on the table I'm just so tired and overwhelmed.
And, I keep saying to myself, "I have a kid with a disability." My kid is disabled. He is not like other kids. He can't navigate the world with the same ease that all the other kids can. It seems so unfair for him. i'm so sad for him and just want him to be ok.