Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Thursday, November 30, 2006

Why I Hate Rufus....(At Least a Little)

Rufus arrived in the mail today. A few of you, Im sure, know who Rufus is. Rufus is the bear with diabetes. I called the Minnesota chapter of the JDRF a couple of weeks ago and requested a bag of hope, and $7.75 in postage (paid for by JDRF) and a couple of weeks later, here comes Rufus the bear with diabetes and a load of other stuff.

Gracie is THRILLED about her bear with diabetes. We read the book and she was so excited because it was about things she has to do, too. She loves this bear already. And I think I might hate it. I mean, I love what this bear has given my daughter, but every day in my daughter's damned honeymoon scares me more and this Rufus just nails in the bitter truth of her diabetes reality. Ick. I've been off and on tears all day. I thought I was over this, but endocrinologist (not for me but for her) and stupid diabetic bear is way too much reality for this reality stricken mama in a week.

We are not really dealing with a full three year old diabetes reality yet. Gracie doesn't take insulin with meals yet. She doesn't need a medical id bracelet, yet. She takes a tiny amount of lantus at bedtime, 1/2 unit. We have one glucagon kit, but she really isn't in danger of having a low. We don't count carbohydrates for her and we don't really watch what she eats. See what I mean about not being in full three year old diabetes reality? So it is easy to fool myself that it will stay like this forever. I joked at the doctor's office that a honeymoon of ten years sounds just "perfect." I can handle a shot at night and 4 - 6 pokes a day. I don't want to do more. I don't want to watch her sugars rise. Thus far each day they are mostly normal, and subsequently I am mostly okay.

Ick. I cannot adequately express the fear this ick is, or the pain this ick is, or the sinking feeling this ick is. It just is. And this bear is proof that this isn't going away and this isn't going to get better. This bear is a punch in the gut. This bear is forcing me to face eventual truths. And I just don't want to. And I'm not sure I can. And I don't want to feel what I will have to feel to get where I need to be to accept this. I'm not ready.

Every reading that isn't right: 164 after dinner last night (groan), 139 this morning (moan), 153 at 2pm on Saturday...Her random readings that show that at least randomly, she isn't staying normal, this isn't going away. This bear is here to stay.

he is kind of cute. I won't chase him off. But damnit, I think I'm gonna pout for at least another night....and thank GOD that bear doesn't expect to sleep in MY ROOM.


Minnesota Nice said...

Damn...........Sarah, you are doing a really good job in dealing with all of this, one step at a time.....and, hopefully, the new challenges will present themselves in little increments so they don't have to be dealt with all at one.
(I know that was a dumb-ass bunch of talk-is-cheap words, but I couldn't think of anything else to say.)
Stay warm, and have a good weekend.

Vivian said...

Sarah- I am so sorry for you and your peanut. Rufus is supposed to make it easier but I guess not for Mom. I was just telling my husband that this is so hard because we don't know exactly how Daniel feels but I think it just might be harder for you because you do. Big Hugs!!

In Search Of Balance said...

Sending you and your beautiful daughter lots of good thoughts....

Sandra Miller said...

When I read that you feel it's easy to fool yourself that Gracie will be in the honeymoon forever, I remembered feeling the same way about Joseph.


Stay strong, Sarah. You really are doing a beautiful job dealing with this.


justme said...

I have no idea what this must be like for you. Sending big hugs and good thoughts to you both.

Shannon said...

Accept what you feel at the moment.

You're going to go through a rollercoaster of emotions as you watch diabetes develop in your daughter this slowly.

You are doing a tremendous job and I can't express to you how much I admire you.

Look at all that your dealing with and you're doing it so gracefully.

Kevin said...

I don't know what would be worse: going through a honeymoon period with a child or not catching the diabetes until it's full on. I had never heard of a "honeymoon" period with diabetes until recently, and I have no recollection of having one myself (though I was five at dx).

While it may allow for things to sink in, and for adjustments to be made, it's also kind of like pulling a band-aid off s..l..o..w..l..y.

Either way, both suck. I am so sorry you have to deal with this and that Gracie will have to deal with this.

Be strong, you're doing great, I'm sure.

Penny Ratzlaff said...

Riley got a Rufus bear early on in his diagnosis. He loved it and took it everywhere he went. When Riley got a shot, he would give Rufus a shot. Rufus was a big comfort for Riley, but he wasn't really my favorite bear either.

I think he was just an outward reminder of Riley's disease. He took him to Holden's ballgame and to church and, well, I just got sick of seeing him.

But, now Rufus is sitting in the corner of Riley's room. He doesn't get shots anymore. He doesn't travel with us anymore. Riley doesn't need Rufus anymore, and somehow that's comforting to me.

Chrissie in Belgium said...

Sarah, I wish I could give you some encouraging words, but i don't know what to say. Honestly I have always felt so dam lucky that my kids are not diabetic. RATHER me than them! I think how do you deal with all the shit being thrown your way? HOW??!!! That you are standing up so well is magnificent! I guess you deal with it b/c one really doesn't have any choice but to deal with it..... If I could I would come over and talk with you and make you a cup of tea and hug you!

Tekakwitha said...

I got Rufus when I was diagnoised, at age 23. He really touched me even though I was beyond the teddy bear age. I'm glad your little girl is comforted by him, but so sorry to hear the reverse with you.

Keep on taking it day by day. You're doing an amazing job.


Christine said...

I can agree with the "too much reality bit" way too much. I also was diagnosed early, and got to watch my pancreas die as I moved from just testing once in awhile, to using some insulin, to using a lot of insulin. (((hugs)))

Jamie said...

I can relate to everything you are saying. Accepting the fact that our children have Diabetes isn't an easy thing to do.

Rufus is cute ... Danielle has a "Ruby" bear (the female version of Rufus) - she shows everyone that cares to see that she has patches on her to show where she can have "neeno's" (needles). You don't know whether to laugh or cry.

Hang in there.

Scott K. Johnson said...

Hey Sarah,

Hang in there.

There will be a whole lot of the grief process going on. A whole lot.

Don't try to force anything. It has to run its course. Your feelings I mean.

You will come through it with more grace and strength than you would think.

Chrissie in Belgium said...

I wanted to mention one other thing - you point out that Gracie will learn "control" via you and that this is a huge responsibility. I agree totally. I always thought my Mom was kind of hard on me. Remeber i was 10. I was simply told it is a pain but it is my responsibility to manage it. She involved herself really very little in the whole thing, but she saw to it that I was very well educated in how to take care of myself. No funny business. Now in retrospect i think she did me a great service. It was hard, but I learned that I had to deal with it, i had no other choice. When i hear of mothers who do so much for managing their children's diabetes, I worry what will happen when the children grow up and must manage on their own?

Amberthyme said...

Hi Sarah,
I just found your blog yesterday. I know how you feel about Rufus. My 2 year old daughter got her Rufus and would have nothing to do with him for about 2 weeks. She already had a doll that was with us in the hospital that she gave "pokes" to all the time. I couldn't read the story without crying. I tried to explain more about diabetes to her with Rufus but both of us were overloaded & fed up with all the new "rules". Then her brothers found Rufus and started playing with him and my husband read the story to them. Although Rufus was supposed to be a comfort to my little girl he was a good tool to explain diabetes to the boys.

Hang in there. I hope the pre-diabetes stage lasts a long, long time for Gracie.