On The Hardest Thing Ever

This is hard. I mean really really hard.

I am not generally afraid to do hard things. In fact, I've done a lot of really hard things, Hard makes me stronger. Hard builds my character. Hard allows me to understand others. So hard, isn't something that bothers me - at least when it's something hard for myself. It's a different story when the hard thing has to do with my child. 

I am not totally sure why I am writing about this. Maybe it is partially because I currently cannot think of anything else and maybe, if I write it down, it will free my brain and give it some release. Or, perhaps it is a little bit because I know I can't be the only parent who has ever dealt with this, and so my sharing might help someone else. 

The stigma of mental illness looms heavily. I find it absurd that we, as a culture, can completely accept someone having a physical illness, yet cannot fathom accepting the illnesses we cannot see. So many individuals suffering from mental illness see their misery as a personal failure, a failure to be "normal". So many parents of children suffering do not know how to talk about it with them, or with others - they do not know where to turn for help. Everyone suffers in silence.

I do not want my child to go through life with this pervasive cultural belief hanging over his head. I want him to know that being autistic and having a mood disorder is not something he did or didn't do. It is part of who he is and he is a most wonderful person. He is a wonderful person who suffers in ways that others can only imagine. He is a wonderful person who fights, on a daily basis, to be able to do things that other kids do, to be accepted, to be liked. And, even in his darkest hours, he can always find a kind word for someone else.

I am tired of it being hard to talk about. And yet, still, it is. It is so deeply personal. And it feels like no one else could possibly know what it is like.

It is hard to talk about because I'm living it with Simon every day and so it is always fresh in my mind... and, painful... ALL.THE.TIME. It is hard to talk about because I do not want anyone to feel sorry for me, or for him. I want to express how I feel, my fears and concerns, and not see that look of pity on someone's face. It is hard to talk about because, inevitably, well-intentioned people that love me and love my child will ask me what they can do. And, it is hard because I know I need something. I know Simon needs something. And, I have no idea what it is that we need.

Not knowing; not being able to create a roadmap with which to travel; not having a solution to work toward - this is a completely uncomfortable place for me to be. I may be someone who runs toward chaos, but I do so because I can make it certain - I am generally confident in my ability, through my determination and with perseverance, to eventually find a solution, to solve the puzzle.

This situation is not like that. The chaos I'm running toward has not allowed me to make it certain. Instead, I have only found more chaos, worse than the chaos I've left behind.

On Friday, Simon jumped off my deck (a good 12 foot drop) and ran away. Fortunately, he was found by a kind state trooper and brought home. Fortunately, also, the state trooper understood that my autistic child was not in a state of mind where either of us could guarantee his safety. And so, he got Simon back into his car and we went to the hospital. I am glad that AAMC agreed to keep him until a bed opened up at Sheppard Pratt in their pediatric unit. And we are lucky, that I was able to hold it together, despite being absolutely overwhelmed and terrified by the whole process.

So here we sit. I have one child who doesn't understand why his mind is a scary place, jumbled with fear and uncertainty. A child who understands that decisions have consequences, yet cannot seem to stop himself from being recklessly impulsive. And, I do not have an answer for him. Other than telling him that at the new hospital they will help him, I do not know what will happen.

And my other child? Well she is scared by what has happened, and feeling like her brother is getting attention because he is being "bad." She doesn't understand, even when I try to explain, that his mind is feeling sick right now. He is making bad decisions, but he is getting attention because he is not being safe, because he needs help. I cannot find the words to tell to her that right now he thinks being alone or dying is a better option than what he's living in his mind. I do not understand it myself, so how can I explain it to her in a way that doesn't terrify her, as it terrifies me? When she asks when he'll be better, I have no answer. I do not know what to say.

I want so very much to help them both through this. I want to keep working to give Simon the resources he needs to live his best life. I want him to live a happy life, one where he is not afraid of what's inside of him all the time. I want Alli to always feel that she is important, too, even though her brother's needs are constant and continuous.

And, the very hard part is that I do not have the answers for either of them. Or for myself. It is this impossible situation that I am wading through, carrying my children on my back.

These days I feel as though I am barely hanging on by a thread. Sometimes I wonder why it all has to be so hard. I wonder why I can't, every once-in-awhile, have the easy path to travel...

There is simply no other choice though, not for me, and not for my children - I must hang on.

As long as I hang on to that thread, then eventually it will be okay, for all of us. And we will be stronger than we started. If I don't believe this - if I don't continuously remind myself that I believe this, I'll never make it through.