Thursday, February 21, 2008

Damaged Goods.

I will preface this post with the fact that some of you may not like what I have to say, and this is a borderline rant. I will also remind you that this is my personal place for my opinion, and that I know by posting this I give you the ability to respond in whatever way you see fit. Here goes…

As a whole I think I have gained a lot from the various online Diabetes resources. I’ve gotten information about pumps, tricks to fix hyperglycemia, and support from people who have never even met me.

While those are all great things, each time I stumble upon a post in a blog or forum about how much a parent hates diabetes, I feel hurt. Not only for me, but for those parents and children. I know that it’s not an easy disease to live with or manage. I know that it pains a parent to look in the eyes of their child while they are struggling with a low. I certainly know the terror and exhaustion that each shot or infusion set change can bring to everyone involved. But what I don’t know is why every time I read a post like this, I feel like I’m not good enough. I feel like damaged goods. Like we should all be traded in for the new improved functioning islet cell model.
I usually know that I am good enough. I'm healthier and stronger than a lot of people. I'm lucky. These posts break me down, and chip away at my attitude.

I want to scream, “If this is the only thing that’s wrong with your child, it’s not that bad!” I’ll admit that I don’t know what it’s like to be a mother or father and diabetes caregiver. But I do know what it’s like to grow up with this disease and now manage it on my own. There are definitely aspects that are completely terrible, but put that in perspective with the fact that there are so many other things that could be wrong in life. Each person is truly a miracle, there is no other word for it. To make it into the world and only have diabetes be what’s wrong, is quite amazing as far as I’m concerned. I really don’t know where I’m going with this. I just hope that these opinions are not being expressed in front of the children with this disease. I can only imagine how much damage that could cause, because it hurts me to read the words about a disease I also have. I’ve formed my own opinion about living with disease, and I hope that other children out there are able to do to this without the outside influence of their parents or other onlookers.

*2/21/08 2:45 PM Revision. After an email chat with Shannon.*

I know that it's not easy. When you are a parent you only want the best for your children, I get that. I guess what I'm trying to say is that your children should be okay, there are so many examples in the blogging community of happy, healthy adults living successfully with Type 1 Diabetes.

I just hope you can find peace with this disease for your own sake.


Araby62 said...

This is often such dark and murky territory for those of us who have diabetes, yet know so little about how the "type 3s" who care for us cope. Personally I notice that a lot of parents who've made comments to me seem to focus too much on the negative sometimes. I try to forgive them because I know their burden is so heavy. Still, it hurts to have a mom learn how long I've had type 1 and say, "But you're so healthy!" As if I should be blind or hobbled by now, like the monsters they've been warned of.

I applaud your ability to articulate your opinion about this!

Shannon said...

I totally understand what you wrote.

I hope it's a comfort for you to know that I for one, do not show the feelings I write about to Brendon. It's all dumped onto my blog, not him. He only sees my matter of factness which is the attitude I have 99.9% of the time. Like I said, anything negative I feel is never shown outwardly.

Also, when you become a parent, you'll understand that even simple bumps and scratches can send your emotions spinning. We don't like to see our kids be hurt in any manner.

What is shown on my blog is not representative of how I act day to day. Usually I'll write about a fleeting feeling...fleeting as in split second.

Yes, us parents have negative feelings toward diabetes, but it's against the disease, not the person. I separate the person from the disease.

I don't think you can blame us for not wanting our kids to have diabetes and hating that they do. It doesn't stop us from enjoying watching them grow, play, express their ideas and jokes, etc., etc.

Jillian said...

Kathy - I'm glad that you see what I'm talking about. I can not even imagine the complexity that being the parent of a child with diabetes entails. It's just difficult to read the negative words and know that I too have this horrible disease they are talking about. Thank you!

Shannon - Your statement means a lot. I'm glad that Brendon has parents who can see beyond the disease to their son. I think it's just that when I read things (not just what you write, just in general) from an outsiders perspective it's hard to see that it's not meant to be something more.
You're right that I don't know of the emotions that seeing your own child go through something like this can bring.
I guess that I sometimes just wish for parents of children with diabetes to be able to take diabetes out of the equation, but it is obviously not that simple.

Just as you will never know what it is like to be Brendon or me, I will (hopefully) never comprehend the emotions that come with being a parent to a diabetic child.

Sandra Miller said...

I understand what you're saying-- and feel awful that these posts are causing you pain.

But Jillian, please don't ever think that any of us look at our children (or any person with diabetes) as damaged goods.

My son is an amazing, funny, intelligent kid.

We approach his diabetes as just another thing we do.

But I won't lie. Sometimes it hurts -- deeply -- when I'm reminded of my son's vulnerability (by say, a middle-of-the-night low that he never felt coming, or a leaking cartridge that prompted ketones).

And it makes me sad and angry.

That's one of the reasons I started blogging-- so that I could unload some of these emotions without making Joseph feel that they have anything to do with who he is or anything he's done.

Because they don't.

Now, over the past few years I've come across many posts by adults living with diabetes in which they wrote at length about their experience with complications; entries in which authors were candid about their fears surrounding the disease.

Posts that hurt like hell to read.

Sometimes, I came away from these entries upset-- wishing I'd never found them.

Frightened that when he's grown, Joseph would share that experience or those fears.

But those bloggers needed to get the hard stuff out.

I guess I'm saying that sometimes we parents need to do that too.

Jillian said...

Sandra, thank you for your honesty. I completely agree that each individual has the right to express however they feel about whatever they are focusing on, just as I have here. Like I've said I can not imagine what it is like to walk in your shoes, Shannon's , or any other parent of a child with diabetes. I can't exactly explain why these posts hit me the way they do. At certain times I'm left wondering and wishing that there could be a way for each of you to find a certain balance. I think it's just because the bad is what we more often talk about and seek support for, even when there is probably plenty of good to go around.

Penny said...


I am so sorry that reading certain posts makes you feel like "damaged goods". I hope that my posts haven't made you feel that way.

But, yes, I do hate diabetes. I hate it with every fiber of my being. But, as much as I hate diabetes it doesn't even come close to the love that I have for my son. If anything the love that I have for my son intensifies the hatred that I have for the disease.

I cannot even begin to imagine what it is like to live day to day with diabetes. I don't know what a high feels like. I don't know what a low feels like. I can't know. I don't have diabetes.

Much like someone who does not have a child with diabetes will never knows what it feels like either.

Riley never hears me complain about diabetes. He has never seen me cry because of diabetes.

I get all of that out in my blog. All my fears, all my frustrations come pouring out sometimes. Like Shannon said, a lot of times what I blog about are fleeting feelings.

Since I hold it in at home it is nice to have a place to let it all out. Not only that but I know there are other parents out there reading it that know exactly what I'm talking about.

I would take offense if anyone ever said that my child is damaged goods. He's a smart, happy, healthy child.

Having diabetes doesn't make him (or you) damaged. But, it does mean things aren't quite as easy for him. He has to work a little harder than most. He has to be disciplined about things that he shouldn't at the tender age of 5.

And, as a mother, that breaks my heart. I don't feel sorry for him (or you). I feel helpless.

That helplessness comes out as anger sometimes. Not anger at my child, but anger at a disease that I can't make go away.

Jillian said...

Penny, I knew I would be opening up a can of worms by posting this. I'm sure no one writes a post on a blog or forum to offend or hurt someone. It's just that sometimes, not always the words sting. While I know diabetes is not who Riley is or who I am, sometimes it's hard to hear people talk about something that is so much a part of who I am with such constant dislike. I'm glad that each of you have the blogging avenue to express your emotions, just as I have here. I do not consider any of the bloggers sons and daughters damaged goods, I think they are wonderful and brave individuals with so much more to offer than just the negative scary tales of diabetes.