The Downside Risk
You might not have guessed, but before I was a tree hugging hippie in Santa Cruz I was a yuppie banker in Scottsdale, my life was far from organic. I don't think much about those times as I really do like my life now. However yesterday I was reminded of a concept that I learned from my life long ago and that is the term, downside risk. Here is one definition that I found for it: "Downside risk is the financial risk associated with losses. That is, the risk of difference between the actual return and the expected return (when the actual return is less), or the uncertainty of that return." I have to admit that I think about this more than I would like, not with our retirement accounts or investments but with something far more valuable, Claire. It stands to reason that with therapy you can work toward gaining skill and getting stronger. With Rett Syndrome...not so much. The actual return is often far from that that was expected. Our most recent experience with this was with the power chair. It's a pretty big deal. I had honestly never thought about independent mobility for Claire outside of walking. So when her pt put her in a power chair and she did well with it at the first crack I was blown away. Suddenly there was possibility that I had never even dreamed of. Yesterday, at physical therapy Claire was enjoying the freedom of rolling herself around with a demo powerchair for the third time. She was focused, peaceful and so happy. She had been going backward and in circles. She stopped, her hand subtly shook as she tried to get her arm to push the joystick forward, her physical therapist gave me the silent look that said, "look at that, look how purposeful, that's amazing" then it hit. She froze, rather, seized. She stopped breathing and slowly all of the muscles in her body tightened, we held her hands and reassured her that she was going to be alright, but it felt like a lie. After the fireworks I transferred her to the car and as she fell off to sleep she smiled. It was so obvious that she really wanted to be able to go forward, she was putting the pieces together, purposeful hand movement was but a moment away. Part of me never wanted to try it again, not if THAT is what would happen. It left me thinking, which is the greater risk. On one hand to learn things she has to seize and with that we risk aspirating and a number of other complications, it's playing with fire. If we don't push her, we risk depression, anxiety and that she will slowly slip farther away from us. Neither really seems like a good option. Then I step back, take a breath and realize that those are just the downside risks. While they are very much a part of reality I have to remember to look at the potential too. Claire has already made the world around her a better place. People who get to spend time with her often share stories of how she impacted them, changed their thinking or encouraged and inspired them in some way. Claire has already accomplished things that I was told she never would. I am still struggling to figure out how, but I have got to keep looking at that side of the picture. I have to keep choosing to look for the opportunity and remembering that with higher risk comes higher rewards. I'd like to think that someday that reward would be her telling me, "Thank you for not giving up on me even when it was hard." Of coarse at that time she won't be needing me for much more than help with her injections since the treatment that was discovered for Rett Syndrome was so wildly successful. I think I will choose to end my story there.