Sunday, July 27, 2008

Jess & I made it back to church today. We've been pretty hit and miss for the last year or two - my fault. I have always attended regularly but it seemed tougher and tougher to force myself to go once Justin really got sick and then Jess, and then this and then that.... I guess I sometimes feel like we're on display, then I realize that everyone has their own problems and ours just aren't that important to most people.
Although it does bother me some that the pastor has never once inquired about the kids' progress or how Bill is doing. I know he is fairly new and came about the time things were really getting rough for us and we weren't attending as much. When I sent email updates I always sent it to Pastor Tim also. I never got a single response from him. Somehow that makes me feel very insignificant, and it shouldn't. Now, he did stop at work and talked to me before we left for LA the first time and had us come to the board meeting to be prayed for. He also stopped before we left for surgery in Houston.
I have discovered that my email updates were forwarded to a lot of other people, which doesn't bother me, although it surprises me. I believe some even made the rounds of some of the teachers at school and a lot of church members also received the updates through forwards. I haven't sent an update for a long time, have no idea what to say - we wean, watch and wait.
So that brings me to the subject of progress. At this point (10 weeks post op for both) I can honestly debate and win the fact that they each have a cure and the fact that neither have a cure. I guess that's why it's a waiting game.
Justin has grown an inch since surgery, he's now 6'1". I know that guys tend to grow for longer than girls but I find it funny that he grew an inch in the first month or so after surgery. He has also lost quite a bit of weight. But - he still doesn't feel any better. I pray that will come with time. It could be encouraging that he could not withhold for a full day to do a midnight blood draw. Tomorrow he's weaning to 12.5/5. He says he never really has felt a difference with any of his weans. I'm also not sure about his living situation, but don't think he cares enough most days to actually think it through. But that really isn't something I can help him with unless he asks my advice.
Jess, feels pretty good and has had a very easy time weaning. She's at 7.5/5. She's debating whether tomorrow she takes off her 2.5 mg from her a.m. or p.m. dose. I really think that her adrenals are working. She seems to be high in the mornings after her dose, but isn't by afternoon. She has actually gained weight but when I saw her yesterday for the first time in four days I could tell that her face seemed thinner and her tee a little looser.
I guess only time will tell.


MaryO said...

Congratulations on making it back to church! I can understand your concern, though.

I had been a member of Sweet Adelines for 10 years. When I went back post-op the director didn't ask how I was, didn't comment on me being back, nothing. I never went back.

I'm not sure about that forwarding the emails thing. Maybe they do that so that others can add their prayers, but it would seem that just sending a list of people who needed prayers would be enough.

Emails can contain information you don't want shared with the whole congregation and I don't think it's right to forward those unless you were warned upfront that they did that for everyone.

New or not, the pastor should be paying better attention. Even if you weren't attending that much, his behavior is the kind that can send you looking for a more compassionate pastor,

Good luck to you with forward progress!

judycolby said...

Thanks Mary, I just thought I was being paranoid about the pastor not ever asking me (even once) how the kids were. THEY HAD BRAIN SURGERY! Our old pastor always asked after Justin before we knew what was wrong. Later he asked about both kids and he was no longer our pastor then, he'd retired.