Russian Roulette

I was talking to a good friend the other night, the mother of a gorgeous girl with holoprosencephaly, and she mentioned that making decisions and caring for her daughter sometimes feels like playing Russian Roulette.

You feel you have a small window of time to help your child, and that within that window of time, you have to do everything in your power and everything outside your power to pull your child through that window. But the situations are impossible. What will you choose? How do you know what is best for your child, unless you try it? How do you fund all these trials, when you have to take care of your child?

And with every day that goes by the window moves further and further away and you face the possibility that it will disappear completely and your child will be trapped in his body, with no way out. And you feel the weight of that gun in your hand and you feel that if you don’t pull the trigger you are dooming your child but if you pull the trigger it might be the one with the bullet.

So this post is really about my imminent nervous breakdown. About the subsequent agony of knowing that something’s gotta give.

Everything seems paradoxical and dependent-related. I see so much potential when I look in Nathan’s eyes. I see an intelligent loving boy who has so much to say but no way to say it. And I do feel that we have a window to help him, there is a piece of the puzzle that I have to find and plug in and Nathan’s life will be better. But I already found that this piece cannot be found in any of the conventional treatments currently available.

Which brings me to my daily insanity. Every day I need to make sure Nathan gets all his therapies. He needs these therapies, without them he will lose what little he’s gained, and his little body will become more and more painful. But I need time to give him the therapies, time to do them with him, to drive him to them.

But I also need money. Lots and lots of money. Because even if the state pays for some of his therapies, they don’t pay for everything he needs. And they pay for the ones that we already know aren’t the missing piece. I believe they help him. But Nathan needs more. And more is VERY expensive. All of the programs we’ve looked at cost a small or a big fortune.

So every moment I’m not physically with Nathan I am working. I have a consulting business with about 10 clients that I work with on a weekly basis. But it’s not enough. So I started a second business to supplement the first. And each one of these businesses is a full time job.

And then there’s all of Nathan’s services. It’s another full-time job to manage his serivces, coordinate with all of his therapists, do all the paperwork, take him to all his appointments. That’s just to maintain what he currently has through his early intervention program. Then there’s all the paperwork I have to do to get him equpiment, dafos, more services. And finally, the research to find other programs, the time spent talking to other parents and doctors and anyone who has an opinion on how to help Nathan.

And what you’re left with is a walking nervous-breakdown-to-be shell of a woman, running around, working, and taking care of stuff from 7 am to midnight, day in and day out.

But I ask you…what do I give up? Do I give up the work that brings in the money to try the treatments that could help Nathan? Do I give up trying expensive alternative treatments? Do I work all day and night and let someone else take care of Nathan all day so I can hopefully earn enough to do as many treatments as Nathan needs? Even if I worked all day and all night, would I make enough?

This isn’t about acceptance. I can accept Natahn completely and still want to pull him through that window. Just because I accept him, it’s not fair if I give up trying.

I have been staring at a mindmap detailing my responsibilities all day and wondering, what do I give up? Do I give up on Nathan’s future? Do I keep trying to go on the way I am? Do I give up advocating for him? Do I give up work?

And then today I happened to read Louder than Words – A Mother’s Journey in Healing Autism . I was in tears for most of the book.

Even though her journey is about dealing with a child with autism, I felt like we were dealing with many of the same issues. It felt like she was narrating my story. Her dedication to doing whatever she had to do for her son. Her belief that she would find out anythig she could and do whatever she could to help her son. It was amazing. And she did. She mostly cured her son of autism. She never gave up, and her son is incredibly functional and barely autistic.

But it brings me back to impossible choices. And back to the mouth of the nervous-breakdown cave.

Speak Your Mind