Thursday, July 24, 2008

It Hurts Too Much Sometimes

Emma is starting not to understand why she needs needles all of the time. The more she is learning about what has happened to her the more she doesn't know what is happening to her. This in itself tears us to pieces.
I have not yet seen her wake us up in the morning with a huge smile on her face holding her NPH in one hand and her rapid in the other while her syringe is in her mouth asking us to please give her insulin because she needs it for energy and not to feel yucky. Or dropping everything she is doing because she wants to come over to us and have us give her a needle.
Weird eh?
Shit. Instead we are convincing her to settle and without struggle to take 5 seconds out of her day to dose her. It is getting harder and harder by the day to dose her. As much as the dosing is like clockwork so is her little excuses and evasiveness. FUCK.
The very worst moments of our lives can come at times when we finally convince her (on the verge of losing our Patience) to receive the injection, finally settling into her deep breathing, picking a site, and holding still. But dammit to all hell. That is the one that hurts her. That is the time she runs away from us. To her time out spot. Not wanting to have anything to do with us. Mom is crying at this point. I am crying. Emma is beside herself. Anna's face turns to a gleaming smile to a serious "knowing whats going on" kind of look.
Emma is hurt. Her skin hurts. Her yucky cells hurt. Full fledged tears.
As much as people ask us how we are doing and how Emma is doing with it all. We smile and say its good and go into our prefabricated "as long as we watch her, and she exercises, eats well..etc..everything is OK" sort of thing. It still fucking sucks.
I wish she could have had 6,8,10, or 14 years without this.
A break. A break. Give us a break for a year, a month, a day. An hour.

I will be better tomorrow.


George said...

I am so sorry Chris. A break, it should be allowed. I am so sorry man.

Here's to tomorrow.

Scott K. Johnson said...

Hey Chris,

Very powerful post. I can't even imagine.

I too am sorry that she and you guys have to go through this crap.

It sucks.

Nicki Christensen said...

That breaks my heart. Poor little Emma and all of you too. I'm so sorry. A break is much deserved and it will come. There will be a cure!

Shannon said...

A break will come someday. Hang in there with the rest of us until then :)

Colleen said...

I can only add that I'm so sorry. It sounds trite but it's not meant that way.
My usual response when people ask me what it's like to have diabetes is to tell them it's not so terrible (mine) when compared to the children with diabetes and the parents of the children.

Penny said...


I wholeheartedly understood everything you wrote.

I'm looking forward to the never-ending break.

Jamie said...

Waiting for that break over here too.

Not that this is going to help you feel any better about things, but I think it's an age thing. Danielle does this to us on and off on a regular basis. She goes in spurts when she fights us on the shots and it breaks our hearts. She's gone on for as long as 2 months, then she's ok with them again. In the meantime, it's maddening/frustrating and it hurts to have your child run and hide under her bed when it's time for a needle.

Hang in there Chris and Denise - you're not alone!

Deborah Maytchak said...

Chris, that one hit home with me. I have to say, even though we deal with Devyns diabetes every day and he for the most part is great with it, I cannot imagine the pain of what you guys go through. We have had the elicit "break" you speak of since Devyn was just diagnosed this June at the age of 14. We have taken those years forgranted because we could. Even at 14, there are the days when needles are thrown across the room in anger because he did not draw his insulin proper, or the lancettes go flying because they just do not seem to draw enough blood to test at that sitting no matter what. At 14, he has become partly a responsible adult losing a part of childhood knowing and having to be way to responsible for every day life. But, we had the break. I am sorry you have not had it yet, but I hope that all will know it some day. Your blogs are great Chris. Keep it up.


PancreasMom said...

I came on to blogger tonight looking for someone going through what we were too tonight, I am feeling like a struggling parent of a diabetic since my son who has seemed so "okay" with it, with eager attitude to help make himself feel better with checks and boluses, but things are changing.. tonight he said he is tired of diabetes and does not always want to check himself - he declared he is 'done'

We too wish it was done, like you said, even if just for an hour, we would take it.

I wish you a better day tomorrow... and one for all the kids who have lost a little part of the

Chris said...

You guys are all too awesome. I am away for months, i do not comment on blogs anymore, then i show up with this post and you all embrace me and my family. You are all very much appreciated.

Thank you.

Yes..and here is to tomorrow.

Anonymous said...

This post is a heart-breaker. I think endos should consider putting such young children directly on the pump soon after diagnosis because, clearly, this is psychologically damaging to both parent and child. You can numb the pump site so the child does not feel pain with the pump insertion. I know insurance is an issue. Hope the costs of pumps will one day (SOON) be picked up by the government. The younger the age of diagnosis, the harder diabetes is to deal with. Hope your daughter stops being frightened of the shots soon, although that is a lot to ask of a child her age. I cannot even imagine how I would deal with what you both are going through. But I have a feeling things will get better. These kids are very brave and resiliant.

Lisa said...

{{{BIG HUGS}}}} I know exactly what you are going through. It is excruiating. Sometimes it is hard to go on, but because life is the way it is you have to.

There will be a break for all of us eventually. I hope things are better by now. If Emma is like Isabelle it changes daily.

Hang in there.