Wednesday, September 15, 2010

Laying Claim to her Body

It sounds so 'uppity' or 'new-age.'
I don't know what it is, all I know is that it is what is real.

Diagnosis D

Grace HATED getting shots in the beginning. Though, all of us know, that it wasn't just my child hating getting shots, it was ALL of our kids hating the shots. Don't tell me you haven't been there and your child just absolutely loved getting shots, cause I see your lips moving and I know you are lying. Ok then.

So, our way around this, in this family, what worked for us (you see where I am going with this - oh yeah, it's a 'this works for me, I don't know what works for you and your diabetic regimen, I'm just trying to do my own thing' statement) is that when Grace needed a shot, we would wait for her to be ready to get the shot. And let me tell you, we sometimes waited. The most we ever waited was 11 minutes. We told her there was a rule - Mommy and Daddy would never give you a shot unless she was ready. Being ready meant she was calm. That's all she had to do in the whole thing - stay calm. When she was ready, she gave the go-ahead and we gave the shot. Eventually the waiting decreased and decreased, til she was ready immediately to get the shot. I based it on the fact that I was never going to chase this child to give her shot, I wasn't going to wrestle her, I had respect for her and her body.

I kept telling Grace 'It's your body, you get a say as to when and where.' I even let her choose her shot sites from two that I would pick.  I do truly believe that with all the loss of control in getting diagnosed with Type 1, this enabled Grace to gain some control. She controlled when she got the shot. She controlled where she got the shot. Now I know some of you out there say 'I could never wait!!!' I thought so to, until I tried it. Grace was going to get her shot and we would wait. Simple as that, but ever so complex as that. I believe it empowered her to have some control over her body.

I would repeat this mantra to my little girl of 6 and 7 and now 8. 'YOUR body. You have a say. You have control over YOUR body.' I think of it not only an empowerment, but what I have to teach her. This body is your vessel to get through this life. Treat it well. Care for it. It is yours.

The pump

We were 16 months after diagnosis when Gracie would finally talk about a pump. Before that time, it was always 'No way!' and 'I don't want one.' Again, we waited (are you sensing a theme here???) and sure enough, my gal came around after seeing the OmniPod. I know how my Grace works - there is no convincing her. It has to be her decision on her terms. And it was. We were ready for the pump before she was. But once she was ready, she was onboard. Totally. Again, she was the one who was wearing it. I could have forced it on her. I was in for a big fight if I did and I knew that. Who wants to fight about the pump every day? Not me sister, so I didn't even try. I waited. It was her body and she would tell me when she was ready. She did.


Here is where we are now. Our endo would like us to try a CGM on Grace. Just a trial. He pops out his DexCom and shows her. She smiles politely. She asks if this would be another insertion and he shows her the sensor. She says 'That's great!' and then immediately says 'I don't want one.' and walks into the other room. Our CDE says we could have one on a loaner basis and it would just be for a trial, to see if we like it and all. I look at him and say 'Well, I'm for it, but I'm not the one wearing it.'

Here's where it gets sticky. He says we should just tell her that we are deciding to do it and it's just for a week or two. That's it. Our decision. Cause, you know, we are 'the PARENTS' and all. Case closed.

I tell him how I roll. I tell him how I parent. This is not what I do, I say. I have told her time and time again that it's HER body and HER choice on some things and how do I just fold that all back in and ask her to turn around while she cries and I slap a sensor on her? 

I understand parenting. I make a million decisions that are totally out of my kid's hands 24/7. I don't give choices in a lot of life. But I do when it comes to diabetes and my 8 year old girl. I believe what I say, it is HER body and she most definitely can make choices when she is 8 and VERY aware of everything. It can be her choice. I don't think I am compromising her health by not having her hooked to a CGM. Yes, it would make life easier, yes I would see rolling numbers and numbers and numbers, but at what price to my child's emotional and mental health? It's not that I am saying NEVER and neither is Grace. She is saying not now, I know what it is and what it can do and no thank you, right now.

I have to listen to her. I just have to.
I know my Grace. I know I have to wait.
Others will have to wait too, cause this is how I roll.


Pam said...

This is what worked for you in the past, and it will keep working for you in the future. You know your daughter better than anyone, and if you say she gets to decide, well then that's it. You and Grace together have done an amazing job so far, so keep doing what works. Maybe a CGM will be in her future, maybe not. But I have complete faith that you'll do what's right for you and her. Good for you for standing up for yourself (and Grace!).

Amanda said...

Good for you - I love it!

Denise said...

I love that you give her the power over her body, that is awesome on so many levels.
As for the cgm, my 5 year old started his Dexcom a couple months ago..he says inserting the sensor hurts less than putting on his pump set. I however pretty much hate Dex and wish I had never gone down that road. Yet, I can't seem to get rid of it either.
Best of luck in what you both decide!

Heather said...

Good for you for letting her make some of the decisions! Gives her a sense of independence and that's good. :)

LaLa said...

You are doing what is best for you and Grace. I love that you respect her body and her decisions. You are a wonderful mommy!!

I dread the day when I have to relinquish some of the control to Nate. I hope I am as strong as you are and able to respect his decisions!!

Give Grace a big hug from us! We just love her!!

Jules said...

A perfect post, Penny! I roll like that too and always have. Suspect I always will. Nothing is forced. We have had to wait what has felt like an age when Frank was two but now we are all much more matter of fact. My husband struggles with the patience thing and the waiting but I enter a kind of zen-like zone. It will get done, eventually...
Good on you and Grace. It's her body and having that sense of control and consequently responsibilty so early makes it something she's used to and expects. What a great start!

Unknown said...

I totally agree. When Sugar was first dx 5 years ago, she was itty bitty. **I** made the decisions.

Now she's 7 (and almost-a-half... don't forget that almost-a-half, because she'll remind you). She's starting to make some of these choices on her own, and I have to honor them...because, ultimately, this is her body.

We don't have a CGM either. I'm not sure if/when we'll get one. I have a trial scheduled for our next appt in November, but I'm not sure she'll be on board. If she isn't....well...I guess, like you, we'll keep on trucking.

I feel an obligation to make sure she knows all her options...and then we'll just roll with it from there.

Great post :)

Unknown said...

I cannot believe I missed this post! I love how you roll. I think it is smart to wait until she is ready. It took Joe 2 1/2 years to decide he was ready to give Dexcom a go. We had tried the Navigator and he (and we) hated it when he was like 4 years old.

I like that Grace will most likely feel empowered and in control of her body. I think you are helping her ultimately take great care of the vessel she inhabits.


Heidi / D-Tales said...

I somehow missed this post, too. I don't recall it showing up on my Dashboard. Hmmm... At any rate...

Penny, you're a great mom. I just love the life lessons you're teaching Grace.

I think you know what is best for your daughter, and you know what's worked in the past. You need to follow your heart and your intuition. As you said, you won't compromise her health by not using a CGM.

Based on your story, my guess is that she'll eventually come around to the CGM. It's just a matter of time.

Keep us posted.

Lorraine of "This is Caleb..." said...

Good for you. I hope the doctor ultimately supported that decision.

We had the same experience with Caleb in the beginning. Giving him choices, and thus control, whenever we could, really helped a great deal.

Keep rolling.

Anonymous said...

I just put Ellie's pod on her belly tonight. I have only been putting them on the back of her arms...didn't really think about asking her if she wanted to put it somewhere else. Your blog got the ball "rolling". Thanks, she thinks it's sooo fancy to have it on her belly!!! ha, she's 4 what can I say?!