There are times when it feels like I’m living life on a razor thin edge between sanity and complete shut-down. Catatonia – that’s what it feels like I’m heading for at times. I don’t know how to have any hopes or dreams anymore. My son has this awful neurodegenerative condition, with an immune deficiency and has already had to accept losing his ability to walk, and do a lot of things he’d like to independently. He couldn’t eat enough to keep his weight adequate to grow, so he had to have a tube placed in his small intestine last summer for feedings. All had been going pretty well, but now his abdominal organs seem to be in revolt and I don’t know if it’s a viral infection (like the docs are hoping) that will be self-limiting, or if it’s cancer. He’s had a death sentence hanging over his head since he was 2 1/2, and waiting for the other shoe to drop has pretty much robbed me of my physical and mental health. I accept that as much as I can, but I want to be at the top of my game for him. Trauma and drama were the key words in my family growing up, and my nervous system is now fried and seems unwilling or unable to handle witnessing/experiencing the agonizing pain he is often in. Watching my son suffer because of the constant tests he needs, the IV’s that he hates more than anything, having this HUGE catheter in his arm so he can get TPN (total parenteral nutrition) basically having all his food dripped in through a large blood vessel, and only allowed limited amounts of clear liquids by mouth. The j-tube sits on his abdomen without activity these days, and getting that put in was an ordeal of proportions I cannot begin to describe for him. The “why him? why us?” question has long been replaced by “how”? How does a person keep going day after day watching their child suffer, doing the best she/he can to make it better and barely making a dent, and not go out of your mind with guilt, sadness, and the pain of watching his pain? I know I need to accept what is, but I just don’t know how. All of it seems so crazy and random. Many people have worse situations they are coping with, so I guess trying to take it minute by minute is key. Accepting what is when you find it unacceptable – that’s what I’m trying to come to terms with. If it was all happening to me, that would be one thing, but my child? For that matter, any child?
The first noble truth is that the suffering of birth, old age, sickness and death is unavoidable. That’s a pretty tough truth to make peace with. I recently listened to an interview with Adyashanti on Buddhist Geeks (http://www.buddhistgeeks.com/2010/03/bg-165-im-not-babysitting-your-ego/), and he discussed a form of writing where you put down only what you know, with that inside certainty kind of knowing, to be true. None of the explanations from the tradition I was raised in made sense or felt true in the way he talked about when my son was diagnosed. It was the first step away from a belief system that had always been problematic for me. Years have gone by as I’ve searched for something else to help me find acceptance with the way life is. That search continues, and seems to keep bringing me back to the Bodhi tree. Helping my son on his journey may begin there too. It’s his suffering, his life, that I most want to help with. It’s also his suffering, his life, that I feel least capable of doing anything about.