False Hopes and Blame

by Leighann on April 13, 2010

I sat down and pounded out a draft the other day about the possibility of a cure. I realized as I proofread that I already had a similar draft sitting in queue and even gave it an almost identical title. So this week I present two very similar posts, triggered by two different prompts. Today I react to a post on Diabetes Mine (this post is basically the comment I left). You’ll have to return Thursday for the second.

I have not read Diabetes Rising by Dan Hurley, though I did hear him on NPR and have read several guest posts, reviews, and interviews.

Amy Tenderich’s recent post Rethinking a ‘Cure’ for Diabetes? on Diabetes Mine was a guest post by Hurley. Even though I have not read the book, his guest post struck me on several levels.

My thoughts on this are many and I won’t be able to formulate them coherently, I’m afraid.

1. I NEVER talk to my daughter about a cure. NEVER. Why get hopes up in a five-year-old for something that may or may not happen any time soon. Our reality is that she has diabetes and needs insulin. I would be doing her a major disservice to give her false hopes that she could go off insulin any time soon.

That being said, of course we would welcome a cure if and when it comes along.

2. I agree that I don’t want another single child (or parent) to have to go through this. Of course I wish there was a way to prevent new cases. However, finding prevention does nothing to help my child who already has diabetes.

Though if there was a way to prevent my other child from acquiring it, I would.

3. I always reassure parents of newly diagnosed children that they did nothing to cause this. We have enough guilt already.

I often say when speaking about parenting choices that we have to make the best decisions based on the knowledge and ability we have AT THE TIME.

When our daughter was diagnosed, my husband and I both had the same thought: What if the BPA in the baby bottles we used caused this? (BPA is a known endocrine disruptor.) But when she was born we didn’t have the information that BPA could be released when a bottle is heated.

And if cow’s milk-based formula is to blame, then does the blame shift to me for giving my child formula? I was physically unable to produce enough milk and had to supplement with formula, eventually switching to formula only. I did much better with my second child, but still fell very short.

If we do find that there was something that we could have done to prevent it, I hope that us parents can reconcile this in our minds and hearts and realize that we just didn’t know and did not harm our children intentionally.

4. At this point I am all for better management techniques and technologies. Of course I want a cure, but until then, I want to make it as easy as possible for my daughter to live as normal a life as she can given what we know NOW and the resources available to us.

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{ 6 comments… read them below or add one }

1 Joanne April 13, 2010 at 10:26 am

If it makes you feel any better, Elise was breastfed until she was almost 2 1/2, and only took a bottle maybe 10 times in her life. I don’t think we’ll ever have a good answer as to why.

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2 Jen April 13, 2010 at 11:58 am

I haven’t read the book but your post led me to amazon to check it out. Under product description I found this :”.Why international diabetes experts believe that three simple, little-known approaches—avoiding cow’s milk in baby formulas, getting adequate amounts of vitamin D, and simply playing in the dirt—could prevent many cases of diabetes.”
Hm. Well, I breastfed my son exclusively ( he still nurses at bedtime at age 3), plays in the dirt and I made sure to take extra vit d throughout and after pregnancy AND give supplements to my son. And guess what – he still got type 1.
I agree with Joanne that we may never have a good answer as to why…

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3 Donna April 13, 2010 at 2:27 pm

Great Post. I have never heard of this guy… but I dont think I like him. LOL

I will have to do some more research to know for sure.

My husband and I can barely speak the word CURE to each other so I cannot imagine ever saying it to Jacob. I agree that it would be unfair to give him such hope for something that may be years and years away. I do, however, fully believe there will be a cure in my childs lifetime. And I sincerely hope its sooner rather than later.

As for why – I agree with Jen and Joanne. We may never have that answer. And, truthfully, I am not sure I want that answer even if its available. Whats done is done. Now my focus is on caring for my son… and making his life as normal as possible in spite of this thing called Diabetes.

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4 Kim April 13, 2010 at 9:01 pm

My son was breastfed for 2 years, plays outside in the dirt and has a fantastic level of vitamin D. I watched closely what he ate, not too much high fructose corn syrup, plenty of fresh vegetables. In other words I think I have done everything I could have to give him a healthy start but he still got diabetes. He is 5 years old and sometimes he asks me how long is he going to have diabetes and I don’t know what to tell him. Forever seems to harsh, until there is a cure seems to hopeful.

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5 Jules April 14, 2010 at 4:48 am

Your post made me go right back to those feelings of “I must have done something wrong”. I was like you, Frank breastfed exclusively for only three months and despite my huge efforts just wasn’t gaining weight. So I bottle fed as well as breast feeding for a few more months before introducing solids. I have always fed him wholefoods. My friends think I’m mad with how healthy I was being. For a while I felt cheated as I had put so much effort into it, but life is so random and my beautiful boy got Type 1 at just two years old. I don’t spend much time thinking about a cure. I just get on with living and helping him to be who he wants to be.
A Mum at a toddler group once asked me about his diabetes and said, rather pointedly, “When did you give him formula then?” as though it was poison! I nearly growled my answer and she looked a bit taken aback! She might think twice before trying to apportion any blame in future.
I haven’t commented here before but just wanted to say how reassuring I find your blog and the sense of community it has provided. Thank you.

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6 Laurie Triller April 16, 2010 at 3:37 pm

I personally do not have a problem at all “hoping” for a cure or having my daughter involved in activities that will raise money to support a cure… While we do not focus on this day in and day out.. it is nice to let them know that perhaps one day there may indeed be a cure… I do not think that this is unrealistic. I do believe it is in the up and coming years. Maybe it is because she is almost 13, however, we have talked about the “potential” for a cure since she was diagnosed at 7 years…

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