I realized I haven't written here much. Makes me wonder why. In past posts, I've talked about how we seem to be "fine" for a while, then something happens, we are momentarily shocked and then we re-adjust.
I feel like we've gotten better at this shock stuff meaning we don't get as wigged out when something happens. Sure, we're surprised - like a week or so ago when his right arm wouldn't lift. The adjustment time is quicker, I guess, which is a good thing.
Instead of being so chicken little wondering when the sky will fall, I just figure out what needs to happen next. Well.... not always 100% true because that little worried chicken is somehow always in my head, lurking somewhere.
I don't think that's always a bad thing since my chicken part allows me to think about the good, the bad and the ugly. That "what's the worst thing that can happen" mentality lets me be ready for the worst thing that can actually happen. It's just being sure I don't let the negative overtake everything, which comes a little too easily at times.
So in trying to understand that balance, I've been trying to relish our good times instead of worrying about the worst. The worst is going to happen. That's a fact. How I spend the time getting there is pretty important.
More and more, I think about documenting our good times. How much I love being with Luther.
I do think it's super important to document what Luther's going through. I want people to know what this ugly disease - which has no cure and seems to fly under the radar - does to people. How devastating this is. No chemo. No medication. No surgery. You just live with this slow deterioration of your body.
But I also want people to know how awesome Luther is. This legacy he's leaving me and the people in his life. He is the most positive, laid back, patient man I've ever met. I don't think about it all the time but each day, he's like my GPS - he gets me to places, he keeps me on track, he gives me direction. Once in a very brief while I think about life without him. How will I find my keys? How will I chase that doubting chicken little away without him holding my hand?
Mostly, though, I think how lucky I am to have him and how grateful I am he's opened up my heart and let a little love and light in. I'll carry that light, that goodness with me always.
The rest of the summer is about fun, about enjoying our time together. Wait! The rest of our life is about this.