Wednesday, November 19, 2008

Hope, Belief, Pain, and Faith

Today marks 3 years that I have been blogging. My very first post was Riley's diagnosis story. I've shared a lot with you guys since then.

I've shared my pain as well as my joy. I've shared my frustrations and my triumphs. I've participated in memes and probably shared way too much information about myself. You've heard ad nauseum how wonderful Holden and Riley (and Michael) are.

I've vented. I've encouraged. And, sometimes, I've just been silent.

To mark my three years blogging I want to post about something I haven't in a very long time: a cure.

A few days ago the news reported a possible cure for type 1 diabetes. The researchers were able to create a "permanent remission" in mice with diabetes.

I first read about it at one blog and I must say I felt a little jaded. I didn't feel excited by it. I really didn't feel much of anything at all. I commented on the post without trying to sound like a naysayer. Over the years when I've blogged about being excited about a cure I have received comments that tried to squelch that excitement. I don't want to do that. "Never deprive someone of hope-it may be all that they have". But, I felt that three years into this disease I just didn't have the energy to get my hopes up once again.

I read a few more posts and then I read
Kerri's post about it. Her post included Brian Williams' broadcast. I watched it with tears in my eyes. Brian Williams seemed so excited. Somehow I felt like maybe he knew something I didn't.

I went on to read the rest of the post and by the end tears were rolling down my face. I have been following Kerri's blog for three years. One of her posts is the reason I ever started blogging in the first place. I've read her posts about a cure before. Most of the time she's very cautiously optimistic. She's lived with type 1 diabetes for 20+ years. It's understandable if she doesn't think about a cure all that often. But, this post was different. This post resonated hope.

I haven't really thought about a cure in a while. I've said before that I could never give up hope. I'm a mother of a child with diabetes. All parents hope for the best for their children. I think the best for Riley would be not to be dependant upon insulin to live. So, I hope one day he won't be.

But, hope and belief are two different things.

I commented on Kerri's post that I wanted to believe. I do. I want to believe that one day Riley will no longer need insulin to live. That he will no longer be attached to a machine. That he will run and run and never go low. That I won't wake up in the middle of the night and go in his room just to make sure he's still breathing. That the black spots on the pads of his fingertips will one day disappear.

I want to believe with every fiber of my being that this research is going to pan out, that Dr. Faustman's research will pan out, that any other research for a cure for type 1 will pan out.

But, I can't.

I don't want to be disappointed again. I guess I'm going with not letting myself believe it will happen and hoping that one day I will be pleasantly surprised when it does.

Belief brings up pain. It is painful for me to think of a Riley without diabetes. Why? Because I may never see that happen. It's easier, less painful somehow, to just believe that he will always have diabetes. It's painful to picture Riley delving into a bowl of ice cream without worrying about the high that will probably come hours later. It's painful to think of him eating all the lasagna he wants. I don't know how to explain it. It's just painful.

I hope for a cure, but I can't see one in the future. I just can't see it.

Writing this post made me think of a familiar Bible verse: "Faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1.

While I might not believe right now, I do have faith. I have faith that one day the thing that I've hoped for and the thing I just can't see, will happen.


Scott K. Johnson said...

Happy blogaversary Penny. Thank you so much for sharing all that you do with us. You have added many special moments to my life, and I appreciate that.

Kelly said...

As always, your words are an exact reflection of my own thinking Penny. Together we all keep the faith, but secretly I am sure we all feel the same.

Thank you for your years of blogging. As I mentioned before.. I found your blog on one of my lowest days after Maddison's diagnosis 2 years ago. I have cried many, many tears with you over the blogisphere. You have inspired me, encouraged me and taught me more than you know. Please keep doing what you are doing, you have made a difference to so many. ((HUGS))

Carey said...

Thank you for sharing your words. I've hung on to each one. Take care.

Joshua Levy said...

You might want to read my blog post on how the "research funnel" works, and why these "mice cures" are so over hyped:

And, if you want some hope, you can read my "Status of Human Trials to Cure Type-1 Diabetes" web site here:

After all, there are more clinical trials into possible type-1 cures now than there ever have been before.

Anonymous said...

Happy Birthday Penny!!!
Love you,
Aunt Linda

Bob Hawkinson said...

Happy 3 Penny. I can only tell you that the next years are an exciting time and that I have never seen so much hope on the horizon. My approach has always been to do my best to stay in control so that when they do find a cure, I will be in good shape. Diagnosed at 1 year old, and now almost 46, I have seen a lot of comings and goings in diabetes....I think you get to a point where you have peace with the disease and just do your best. Any positive developments are just gravy....Best wishes, and congrats...

Jill said...

Happy 3 years Penny!
Continue to have faith and take care!


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