Yes some days she cry's about using her leg instead of her arm for injections. Some nights she fights me when I have to wake her up to eat when she is low. Some days she gets mad when she wants a specific snack that is filled with carbs and she can't have carbs at that given moment. Some times she rolls her eyes when I need to pull her away from what she is doing to check her blood sugar.
But for the most part she really never complains about having type 1 diabetes. She has never asked why her? and I have never heard her wish it away. This may come with age? I'm not sure.
Kylie her older sister has sure asked Why Cara?
When Cara is getting something "special" that Kylie can't have. For example if Cara is low and needs a snack, and Kylie wants one but can't have one, she says Why Cara? Kylie has muttered on a few occasions "I wish I had type 1" "Why does Cara get everything?". Kylie sees type 1 as an attention grabber. This also may change with time and maturity?
I'm just starting to realize in our house I don't think the kids see type 1 as a negative. It is what it is and there is nothing that we can do to change it, so move on and deal. Just keep swimming, no doom and gloom here, no tears or sorrow, it just is... at least that is the way it goes in our house.
On my blog however, I know it may seem completely the opposite to my attitude at home. I may seem more negative, I may seem more doom and gloom, I'm sad, I'm hurt, I'm mad, I'm tired, I'm fighting, I'm lost and I'm grieving. I am more TRUTHFUL to my feelings when I blog, I am more real and it's raw. I'm able to take myself away from the every day troubles and distractions of "normal" life and really focus on what type 1 has done to me, Cara and my family.
AND I think that it is a good thing, I think getting it out, feeling it and letting it go is a much needed process in our lives and if I can share that with other people feeling and going through the same thing...well that is a great thing!
Anyways my point is, this story, the reason I realized my double life with type 1 feelings. While we were decorating our hands for A Day of Hope Cara looked at me and asked why we were writing on our hands?...this is not allowed in our house! So I began to tell her it was to show our hope for a cure.
A cure?
a cure for what?
what is a cure?
I think that my jaw dropped, this kid... my child with type 1 diabetes, a disease that she is living with does not know that we are all looking for a cure to change her and every type 1's life out there. She has no understanding, no comprehension of the meaning of a cure for type 1 diabetes. This may be why she has never voiced her wanting to NOT have type 1 diabetes or has not asked WHY ME? In her mind right now it is what it is and there is nothing we can do to change that fact...and it is kinda true!
Now I know that we have talked about a cure because we do the walks for the JDRF every year for 2 years now and we are walking in hopes for a cure. But really I guess the only time we talk about finding a cure is when the JDRF walk date comes around.
I personally am always hoping, wishing, reading, writing and thinking about a cure. You say type 1 diabetes and I think a cure and what that will do for Cara. I feel like I'm always talking and focused on a cure, it just goes without saying, hand in hand for me. For me it's the pot of gold at the end of the rainbow. It's the thing dreams are made of. It's my only and will be my only wish until a cure is found when I blow out my candles, when I toss a penny in a fountain, when the clock turns 11:11. But I guess not at home and not in front of Cara and I think that is OK, I think that is better this way at least for now!
I really don't want Cara to believe or be so focused on a cure right now, I just can't live with her disappointment if this great CURE that I have placed every hope and dream on never comes. If a cure is found that is AMAZING but if it does not we will keep swimming, we will keep living because it is what it is and we will deal with what ever comes our way.
So for now a cure is just something that Cara does not understand and really has a hard time pronouncing and that is just fine with me!
6 comments:
Great post! I think you are right...the blog is a place where you can vent how you truly feel, and you SHOULD be able to get those feelings out. And not only is it good for you, but it's good for other people to hear as well. I think everyone who has type 1 or is taking care of someone with type 1 has felt everything you talked about in this blog. I'm sort of with Cara on the cure topic. No matter what sort of ailment I have, my mom is always focused on the why and the how--as in why do I have this and how can we fix it? I always appreciate her way of viewing it, but as far as diabetes goes, I think, "well, this is the way it is and sometimes there are no answers!" I still want a cure, of course, but I think part of it is that I don't want to get too emotionally involved. Part of me has to remain logical and realistic in order to take care of myself and not get upset about every little thing, though lately I find myself more and more upset about the ups & downs! Anyway, just wanted to say I appreciate your blog! :)
It is interesting in our house too with how t1d is viewed, definitely not something negative. My oldest has asked several times when he "gets to have diabetes, too." For him it is a club he wants to join to be like his daddy and brother...of course we're hoping that doesn't happen, but know if it ever did we'd all be okay.
As for a cure we don't talk about it at all...I don't think he's ready for that yet.
Bridget and Joe have become more focused on it lately...which is funny b/c I am skeptical and I don't discuss it much at all...even at walk time I am very cautious with the verbage that I use. I don't want Joe to think something about him must be "fixed". I don't want him to be caught up in that and/or disappointed when a cure does not materialize in his lifetime.
GREAT POST!!! And fist bumps to the kids.
We don't discuss it either. When Justin was first dx'd we talked about it to help him(us) feel better. We talked about it in a "you never know" kind of way.
I think I was more hopeful back then.
We talk about. Ave gets it. But it's not something we talk about a lot. It's not something we focus on with her. Lately, she has been getting it more. She has started showing her displeasure with Diabetes. It breaks my heart. It was easier when she didn't express it. But I'm glad she IS expressing it so that we can deal with it. But most of the time - it's just her life. No big deal!
It's really interesting how we and our kids think of the cure. I want a cure more than anything, but like you, I don't talk too much about it except around Walk time. Jack, however, is saving his money for a cure. His piggy bank (or Spiderman bank, in his case) is filled with funds for a cure. He wants to contribute, which is nothing we've ever asked from him. He just wants the cure that badly. He'd rather donate to JDRF or another D-related organization than buy a toy. But, he's also more accepting of his condition than we are. Kids are so amazing!
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