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.

Lately

The last few weeks have been exhausting, I am absolutely spent. It's been hard to realize that things are so much harder than I ever imagined. It is obvious that I might loose it when Claire has multiple seizures in one day after just learning that a girl the same age with the same diagnosis had just died from that very thing. In the past I have learned to give myself grace on those days as grief seems like an obvious response. Lately, I was caught of guard by the good days, letting myself enjoy her when she is being herself has been much more difficult. Maybe it is the fear that at any moment things are about to turn or perhaps I don't want to realize just how great she is in an effort to protect myself when someday she is gone. Either way I feel terrible, not enjoying those precious moments when she is able to be herself, I never expected to have to deal with that. Similarly, I had prepared myself for when Chloe acts out because her sister gets more attention, I was ready for that. I was not ready for when she told me that Claire didn't walk just like the man that Jesus healed and asked how we could see him so that Claire could walk too. I knew that the stress of crisis could crush a marriage and we worked to protect ourselves from that. I didn't know that once things got easier we would be left so tired and empty that things would fall apart. I am left shaking my head, it is hard to tell what is real and what is just perceived. Amongst it all I have figured one thing out, I like to ferment food and Claire loves to eat it. Maybe if variety is the spice of life, stress is the good bacteria that grows when you pound the hell out of the nice healthy vegetables, because that's what it's felt like.

Dizzy

I'm a little less mad today than when I last wrote, now I'm just exhausted. We had a holiday weekend with nothing as exciting as seizures and vomiting at night, which I expected, so that was nice. I got some time with Claire, she was feeling good, her body allowed her to come out and be herself and I soaked up every minute of it. Yet still, I am exhausted, absolutely out of energy and it is the first day of spring break. On some level, it feels like I fell off the roller coaster of highs and lows. I didn't try to get off, I just couldn't hold on any more, so I let go, fell off and got bruised up in the process. Here I sit on the side, my body aches, my head is spinning and with the little energy I have, I am watching the roller coaster of life, some friends slowly going up the big climb, others in the free fall waiting for the swing up before a crash into the ground and all I can think about is how to get back on. I know I need the rest. I know I can't stay on a ride like that forever. I know that there is lots of goodness to be had with my feet on the ground or on the slow spin of a merry-go-round. I know that sooner or later it will be my turn again and I will be back into the troughs of the chaos of the ups and downs at warp speed. I know that all I have right now is today, so I am working on it. Rather, working on enjoying it, even if I am a dizzy.

Awesomeness and expletives

I've been thinking a lot lately about the contrast between light and dark. I see it in the comedy and tragedy masks that hang on the wall. I see how the sun lights up a tree that was once in a shadow only to reveal amazing detail and life. Darkness and light need each other, they give each other context. Much like joy and pain work in some sort of bizarre harmony to create moments that inspire and are full of awe, like how compassionate Chloe is as she holds the oxygen mask on her sisters face and gently wipes her hair away from her eyes. I tell myself that it is those moments that life is at it's purest and have been trying to convince myself that those are moments of beauty, but I can't. I am angry, so mad that all I want to do is swear. Perhaps somebody walking by watching me just swear out into space would think that I have Tourette's, oh the irony. Can I back up and tell you why I am so over the top filled with rage? Over the course of the previous week Claire had made some very big gains in her physical therapy. It was in that excitement that I realized that I had in fact given up hope that she would walk on her own one day and while the progress was promising, I doubted. On top of that, Saturday night, while I was on duty, Claire puked all over herself and I didn't hear it and run to her aide. Then Sunday morning she had a huge seizure and there was nothing that I could do other than hold her while she lay catatonic. All of it worked together to throw me into a spiraling depression on Monday. By the end of the day I knew that I had to fight it, that I couldn't give in, that things would ease. So I told the girls we could have a dance party. My heart filled with joy as I watched Chloe twirl Claire around the room, both of them smiling and giggling. I was back, I had fight, Claire's smile reminded me of the thousand reasons why we don't give up. We all sat together to watch the video and that's when it happened, again. Before I could ask for help Chloe ran for the oxygen tank, Claire turned a deep shade of purple and my heart plunged. I grieved the rest of the day and hoped that somehow, Tuesday would be better and sure enough, it was. I spent time in the sunshine, took care of some business and picked up a happy and very regulated Claire who went on to do more amazing things at physical therapy. However, before we were two minutes out of the parking lot, the brain storms hit again, I flew into the gas station and started to help her breathe once more and as I type this, she is still laying still, recovering. There are so many things to be mad about it is hard to pick what I hate the most, the part that she has Rett Syndrome, the part that we are still working on walking or the part that these blasted brainstorms are something she needs. I've learned enough to know that this is how she learns, how she grows. I know in my head that she is making new connections that will serve her well, I know that this is a sign that she is growing and getting stronger both mentally and physically and who wouldn't want that for there kid? Maybe me? I know I don't have the choice, but I wonder if it is worth it. If learning new things means playing with fire in the form of brianstorms that shake her and rob her of the ability to breathe, is it worth it? I don't know and it doesn't matter much what I think, Claire wants it. She wants to learn, she longs to walk on her own, she loves to learn in school and she knows the price that is paid for fun and learning. The reality is that this is our life, Claire will continue to surprise us with her success and scare us with her vulnerability often in the same moments. Hopefully I won't be this angry through it all, I am sure I will cycle through the other stages of grief with some sort of regularity. If you happen to bump into me somewhere and ask how I am doing, don't be surprised when my answer is "Fucking awesome" I'm not trying to be a jerk, it's just the only thing I can come up with to describe my truly wonderful and screwed-up-beyond-belief life.