Mike has been restless at night. I am concerned that he is uncomfortable and not sure what's bothering him. He keeps me up with this because when he shakes, it shakes the whole bed. I try to calm him, but I'm not sure if it helps. I spoke with the hospice nurse, and she said the watch it for a few days.
Brandon turned his ankle again on Wednesday night. I had to take him back to the ortho because he thought he broke it AGAIN. It swelled almost immediately. Thankfully, there was no break, "only" a sprain. Now we hope that it recovers in enough time for his surgery on Nov. 24th. He will not be able to particpate in sports or anything else that could harm him until the surgery.
I continue to be amazed at the outpouring of letters and cards, e-mails and FB posts. This disease has alienated us from our oldest, dearest friends (and some family), yet total strangers have reached out to us in so many ways. Their support means the world to me. Right before the Newsday article appeared, I was probably at the lowest I have been since Mike was diagnosed. I felt so alone and lonely. People I had thought I could count on had disappeared. I thought if THESE people couldn't be bothered, why would anyone else? I prayed everyday for strength and guidance. I prayed that some burdens would be lifted.
God heard my prayers and sent me some new friends. People that before this article, were strangers to me and my family. People that struggle themselves, had reached out to us. Some sent donations, yet others sent cards and letters and words of encouragement. I NEEDED this SO MUCH. I know there will come a day when the mail will stop and dinners will no longer be delivered. Life takes over and people fall into their own routine. But that's OK. I KNOW that my family and I have touched many people, we've given hope to some people and a renewed faith to others. We've raised the awareness for this hideous disease, which is EXACTLY what we wanted. In return, I know I have many people praying for us and I know we are not alone.
THANK YOU EVERYONE....