We just got back from the family weekend retreat from Camp Boggy Creek. The staff members,volunteers, etc are wonderful. I don't know how they can have such fantastic people all in one place. I feel so blessed that we were able to go and meet families, reconnect with families from conference and just experience the camp. I wish everyone could experience it!!! Okay for the good, bad and just weird.
First, as I was sitting in a "break out group" listening to the others mom talking and sharing their stories, I actually thought, "What am I doing here?" I know we have been giving shots, meds, gone to St. Louis for a conference, etc this Disease has completely changed our lives and it just hits me....I'm in denial. All I could think was how did I ever get here? What am I doing here? I shouldn't be here. So I now just want to cry. I hate not knowing Trevor's future....Will he grow? Will he ever have a day pain free? Will we ever find the right medicine? Is there a right medicine for him? Maybe this is all wrong!
Second, Dr. Sukesh is one of the most amazing people I have ever met. There are not too many things in this world that impress me any more but Dr. Sukesh is definitely one of them. He volunteered this weekend at the camp. (they always have a doctor on staff, just in case). Many families are there and Trevor is off with his (PAL) counselor and runs into Dr. Sukesh. He greets Trevor by name and asks how he is doing, etc. Our family sees Dr. Sukesh later in the day and talks to him. He asks about Trevor then says you have an appointment coming up in the next week or so, right? Yes!!! We talk a little about Trevor but tell him we will talk at his appointment. This morning before we left camp, we see Trevor and his PAL playing ping pong and who is sitting there watching? Dr. Sukesh! We greet him and he asks me if Trevor's pain is more severe in the evening. I tell him yes and I tell/ask that is not usually the case. He agrees and tells me he has been watching Trevor and can tell the difference in the morning and the evening with him. He is going to use some new ultrasound they got to look at his joints and tendons on the 8th. I cannot sing that mans praises enough!!! We have only seen him 3 times!!! I loved that he volunteers for things like this. He gets to see the kids outside the office and in the real world!!!
I just pray everyday that I will write the words remissions.
