The Benefit

We had the benefit and it was a sold-out show! Simply amazing. So many people were there and it was so surreal to think that they were all there because of us. I can’t express how incredibly comforting and joyous that made us. To see faces that we hadn’t seen in awhile to others whom we see on a more regular basis. We reconnected with old friends, I made some new ones and it was an amazing night for us both! Some we never even got a chance to say hello to. The night went so fast, but I guess that’s what happens when you’re having fun. It has been so long since we had both gotten out and just hung out with friends. And although it felt weird to me, because it was a funraiser. And you all know how much I love asking for help. I was able to set aside my squeamishness about it and embrace the night and all it offered both financially and emotionally. I want everyone to know how very much it meant to both of us and I thank you. It is a night I will cherish, for it was a reminder that we are not alone…and have never been alone in this. And that you guys truly are my candles in the dark. Thank you…

It was a special night not only for the amazing emotional and financial support we received…but because for the first time since the surgery and subsequent stroke, David seemed more like himself. He was actually smiling and making jokes. He did so wonderful that night and I was so proud of him. And he even held my hand for a brief moment during the movie and gave me a little kiss. And that too was precious, because he hadn’t done that since the surgery either. It seemed like things were really starting to quiet down for a while. But sometimes I think we’re just sitting in the eye of storm. And as it swirls around us, we’re periodically picked up and tossed about a bit, and then thrown back down in the center. And whenever we get lulled into thinking maybe, just maybe the storm was finally dying down; we get knocked around again by it. And today is no different.

David was doing so well Monday, and then by Tuesday David began showing a slight cognitive change. Which we all know, in this game, isn’t good. He started forgetting things in even shorter time frames than what has become “normal” for him and at one point was having lapses in memory every 20 minutes. I called the doctor and they increased his steroids in hopes that this would help and that some brain swelling could be occurring. But unfortunately it hasn’t. He’s now having further cognitive issues and there is just a subtle but distinct change in his behavior. It’s almost like a regression back to about a month and a half ago. But unfortunately, we shouldn’t be seeing regressions. His mental and cognitive status should be slowly improving or at worst staying the same. But there is a definite, subtle shift going on.

This morning he saw a something that wasn’t there and my heart just sank. They have doubled the steroids since Tuesday and it hasn’t decreased any of the new cognitive developments. David has his regularly scheduled MRI Wednesday, unless there is a drastic or critical change with him...if that happens then its off to ER again. But otherwise, we wait until Wednesday. I feel it needs to be done, and yet I’m not sure I want to see what it will have to tell us. I can feel myself gearing up. Bracing for the inevitable roller coaster ride. And I just feel so tired and scared.

The other night, as I was putting David to bed, he looked up at me and said, “I just had a weird thought…what if tomorrow I wake up and can’t remember who you are.” It nearly stilled my heart. And it took every ounce of strength to stroke his head and smile and tell him not to worry about it and to just get a good nights rest. I then proceeded to go downstairs and have a good, long cry. Moments like that stay with you. They make you bend and the weight of them are so strong I feel as if they could break me if I let them. So instead I cry. And then I scream at the universe. And then I pull myself together. Knowing that tomorrow is another day. And amongst all the crap, there will bright moments in the day. Moments that will make you smile. And I have to hold onto those too...

"Life is about not knowing, having to change, taking the moment and making the best of it without knowing what's going to happen next." ~Gilda Radner