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.