Friday, August 25, 2006

The cure debate

Sandra's post tonight got to me. It didn't just bring on the tears, it also made me evaluate the whole "hope for a cure" thing.

We attended a ballgame tonight at Michael's school. It's 45 minutes away. Before getting in the car to come home we checked his sugar. It was 488. (Wow, I handled it so well at the time, but now just typing the number is making me cry. I just want to inject right here, for the bizillionzth time, I HATE THIS DISEASE!!!!!!!)

Anyway, on the ride home we talked about the upcoming walk. And, I can't think of the walk without thinking of a cure. It seems that most people are very hopeful for a cure in the beginning, but as the years drag on they become less hopeful. I started out with no hope at all. For the first several months I would see someone post about a cure and just think "yeah, right". That's how I coped at the time.

But, I've been doing some research. There are a lot of great, great studies going on. But, my hope is all wrapped up in Dr. Faustman's research. I have read a great deal about what she is trying to do. I have seen a couple of interviews. This woman is for real. The first time I ever saw an interview with her, I just stared at her in awe. All I could think was of how many countless hours she has spent trying to cure my son and others like him. She's devoted her life to it. I cannot even begin to express the gratitude that I feel for her and the many others like her that are searching for a cure for this disease and all the other diseases out there too.

One reason I have to believe there will be a cure is because to believe otherwise would negate everything these people have done. I have so much admiration for these people (researchers). I can't just say, "I admire them, but I think they're wasting their time." Even if what they are doing doesn't find a cure, it still brings us closer to a cure. They can say "OK, tried that. It didn't work. Let's move on to something else."

But, the main reason I have to believe there will be a cure is because my baby believes that one day he will be cured. He, like Sandra's son Joseph, doesn't look into the future and see himself taking insulin. He sees himself "eating all the sugar I want" (direct quote from Riley) How do I look him in the eyes and say "Nope, don't think so." ? I can't. I won't.

While I will never try to squelch his hope, I do try my best to give him realistic expectations. For example, I have told him several times that if there is going to be a cure it is a long ways off. I don't put a time frame on it. Although, the number in my head is 10 years. I don't know why. But, Riley tells me he is going to get the cure when he's 10. That's 6 years from now. I just hope and pray that he knows something that I don't.

I don't feel that I've been very coherent with trying to get my point across here. What I'm trying to say is that everyone has their own coping mechanisms. Some people say there will never be a cure because if there isn't one they will just be disappointed. Some believe there will be a cure because they can't imagine dealing with it for the rest of their lives.

My point is, they are both right. I don't think anyone should try to convince someone of the cure if they don't want to be. And, I certainly don't believe that anyone should try to squash someone else's hope. Because, either way, they are doing what needs to be done to cope with the situation they are in.

But me, I'm on the hope team. I cannot imagine giving up and saying that Riley will never be cured. I just can't. Will I still feel this way 15 years from now if there's still not a cure? I don't know. I hope I won't have to find out.

2 comments:

Scott K. Johnson said...

Hi Penny,

I think you have a very healthy outlook on this subject.

I too believe in the cure, but just don't know when it will happen. I hope it is soon, but also realize that it may not be.

I think there is damage done when the docs tell us at the time of diagnosis that a cure is "5 years away". So, I appreciate your work to set realistic expectations.

That will help Riley.

Penny said...

Scott,

I try to be as honest with Riley as I can. I certainly don't want to give him false hope, but I do want him to have hope none the less.

As far as when the cure will come, I have heard so many people say they were told at diagnosis it would be in 5 years. Why is that? Why is 5 the magic number? I think that it's because a lot of docs think they are supposed to know everything. Some have problems just saying "I don't know"

Riley's endo. (who I just love) just says there will be a cure one day, but she doesn't know when and that it won't be any time soon. I think that's the best way to handle it.