Friday, May 18, 2007

Good Dog

While we change Charlie's site at 1 am because he's stranded for hours at 300, I think about this diabetes life. I think about Maeve, sleeping in the next room.

What's it like growing up in this house of horrors, where every so often she's awakened by sounds of torture. Her little brother thrashing around, crying and begging for it to stop. She often sleeps right through it, but perhaps it seeps into her subconscious, marring her dreams of unicorns and royal weddings.

"Break! Break!" Charlie cries.

Charlie usually pleads that we take a break from the site change process. He makes this request before we even begin.

We tell him he's not alone. We tell him about all of you. We tell him there's another little boy out there somewhere going through the same thing this very minute. Tears slowly spill from his deep brown eyes.

"I wish I can take this from you," I tell him.

Generally, Charlie is like a happy puppy. All he wants to do is play all day. His tail is always wagging. And yes, he sometimes pees on the floor. But, he's not a happy pup when it is site change day.

He's 5 now. Not so young. I think about how Charlie doesn't talk so much about diabetes. He tends to change the subject quickly when we try to talk to him about it. He's happy to show people his pump or invite people to watch him get his blood sugar tested, but he doesn't express his hatred of the disease. We've even told him that it's OK if he wants to say he hates it sometimes.

But, he chooses not to.

For a while I thought he just couldn't really express himself. But he has no trouble expressing his hatred of broccoli. I figured he's just young and not really interested in serious conversation. I do feel that is mostly the case, but maybe there's more than I think going on in that head of his. Maybe he does see diabetes as part of who he is. Maybe he knows exactly what he's doing when he's reluctant to dis his disease.

Good dog.


At 9:08 AM, Blogger Penny said...

I've been told by many people with diabetes, that the emotions of this disease are much harder on us parents than it is on them.

Somehow that is comforting to me.

While it is healthy for Charlie to accept diabetes as a part of who it is, it saddens me. He shouldn't have to. No one should have to.

Sorry about the middle of the night sight change. I've been there. Riley doesn't do as well at night usually. But, I wouldn't do so well if someone woke me from a deep sleep to stick a needle in me.

Ugh, stupid disease. But, smart Charlie.

At 11:43 AM, Blogger Shannon said...

The other day I asked Brendon if there is anything about having diabetes that scares him. He said no.

In the past he's expressed that he doesn't like having it and wondered when scientists will find a cure.

I think right now at their young age, they have such a simplistic view of what it means to have diabetes. To tell you the truth, I hope it remains that way for as long as possible.

I don't want him to be obsessed over having it. I want him to be obsessed over playing baseball and obsessed over when he'll receive his next stripe on his karate belt.

At 1:17 PM, Blogger MileMasterSarah said...

I have had diabetes for 15-1/2 years. My daughter for six or seven months (she is four). I can’t say I hate diabetes. I can’t say I have ever hated diabetes or felt consumed or overwhelmed by it. In a lot of ways diabetes is my personal challenge. When my daughter was diagnosed I felt things about diabetes that I had never felt. I felt overwhelmed and consumed by this suddenly “terrible” disease. It all seemed so horrible. Now a few months into this with her and me, I can still tear up when I think that my baby is diagnosed, but then I come back to earth I realize….Diabetes has never stopped me. Diabetes has scared me, but I can work with it, and I can try, and I don’t have to be defined by my diabetes. Diabetes is some rough stuff, but it isn’t so terrible. I know that may be hard to understand if you don’t have it, and certainly there are diabetics that think diabetes is just horrible. For me I live with it. Life did not stop because of diabetes, it went on and began in a different way. Many days thinking about diabetes is second nature. I don’t even think about thinking about it. It all works out, I guess.

At 9:16 AM, Blogger Major Bedhead said...

Well said, Sarah!

At 11:26 AM, Blogger Bernard said...

I got diabetes when I was 15. I lived in fear of this disease killing me until a conversation I had with a great doctor when I was about 40.

Now I took reasonable care of my diabetes, but I really couldn't see myself living too long (whatever that meant). I still remember talking with Dr. Barnett (tears in my eyes as I type this). It was to be a regular check-up and some minor question that came up caused me to burst into tears.

That wonderful doctor spent at least an additional hour explaining to me how he could tell that my health was good overall, and that I had many years ahead of me (that was over 12 years ago). I came away from that appointment with an enormous weight off my shoulders. I really felt lighter.

Why am I mentioning all of this?

Because I think that children internalize a lot of feelings around diabetes. I know that I did. And it caused me to make life decisions as if I didn't have long to live. And that wasn't a good thing.

So please engage your wonderful children as best you can. Make sure they really understand that this disease isn't their fault and that it's not going to commit them to a short life (normal caveats apply here).

This disease is a huge burden. Both on the people that have it, and their family. God bless you parents of children with diabetes. And please work with your children to try and relieve the emotional burden it may be putting on them.

Whew. Sorry for the long comment.

At 7:38 AM, Blogger Jonah said...

Have you told him that he can say he hates site changes and still not hate diabetes?

He can identify as diabetes, but probably not as site changes.

At 8:07 AM, Blogger Chris said...

Maybe once Charlie illustrates his hatred verbally and consistantly, it may make him feel like diabetes is controling him and even at 5 he knows better. This absolutely broke me Carey. And will continue to do so for years to come.
Just look after your lil' dude and one day he will turn around and be telling you its ok to say you hate it.
Nice Carey.

At 11:31 PM, Blogger Sasha said...

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At 11:36 PM, Blogger Sasha said...

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At 11:40 PM, Blogger Sasha said...

Shannon is absolutely right. Kids just don't realize the whole seriousness of the disease, the overwhelming fear of all the possible complications is so alien to them still, the only fear is of yet another needle – and thanks God for that!

I remember myself as a kid with diabetes. I only thought about the diabetes and how much I hated it only when it was time again to go to the hospital or when an injection or a low were interrupting my play time, or when my parents didn’t allow me to go on a school trip because they were scared I wouldn’t have the appropriate assistance with my diabetes. So emotionally having diabetes as a child is the easiest, I wish I could go back to that state of mind, when you still don’t believe that it’s forever, when the memory is short and when you’re too young to think further in the future than the next day.

Parents have it the hardest though. I realize it now thinking back about all that my mom had to go through. The feeling of being powerless is the worst. But you should not worry about Charlie in terms of the emotional burden of the disease, at least not yet. He doesn’t think like you do, he doesn’t hate the disease, he just hates all the needles and pricks coming with it, but in between those things he’s fine. I was, I was as normal as any other child in that respect.

At 6:09 AM, Blogger Carey said...

Thank you all for your great comments. I really appreciate it.

Shannon and Sasha - Very well said. You're right. He's still a bit young to grasp the gravity of all this. And yes, that's probably a good thing.

Sarah - Thanks. That helps.

Thanks Penny.

Bernard - Sorry you had those feelings as a child. I will absolutely let Charlie know it's not his fault. We'll hold George Bush accountable. (I kid)

Jonah - Good advice. Thanks.

Chris - Thanks bud. Hope all is well over there.

At 4:21 PM, Blogger Libby said...

Madison, my daughter, now 7 diagnosed at 4 doesn't seem to mind diabetes all that much. I also wonder how she will be affected as she grows up and begins to REALLY UNDERSTAND diabetes. I hope her accepting attitude continues throughout life when it comes to this illness, as I do for Charlie, and all kids who have unfairly been forced to deal with an illness that didn't give them a choice.

Good luck to you guys!


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