Living with diabetes



Last night Evangeline sat in my bed and cried. Her blood sugars have been too high lately because she has not been checking her blood sugar before she eats and/or forgetting to give herself insulin when we are not around.

In case you don't know, she has type one or Juvenile diabetes, not the kind of diabetes where she will outgrow it, or can exercise it away or eat right and it will go away. Her pancreas does not work at all, her immune system attacked it when she was a year old and by the time she was 2 her pancreas was not functioning enough to keep her alive. Without receiving insulin via a shot or a pump (which is what she has and you can see it on the picture above on her waist) she would die within about 48 hours.

So this has been her life and ours since August 11th 1998. She has always done amazingly well with it but life with diabetes for an 11 yr old girl can get complicated. Last night she was just tired of it, tired of having to stop and check her blood sugar before she eats when her friends can just stick something in their mouths and eat it. She's tired of having to stop what she is doing after she eats to grab her pump and do her insulin dose. She is tired of site changes for her pump, finger sticks and kids asking her what that beeper thing is on her pants and if diabetes is contagious. She is a Tween, that age where being like everyone else is so important, but she is not like anyone else she knows. They have freedom in eating, she does not and unless God heals her or He gives scientist the ability to find a cure, she will never have that freedom.

I know she rarely is sad, she rarely shows others how much this controls her life. But when I have to discipline her for lying to me about her blood sugars or if she ate something she wasn't supposed too, this lack of freedom hits her and us all in the face hard. Like I told her, we have no other option, her nor us. As her parent I have to do all I can to make sure she is healthy and if that includes not letting her go off without me because she is not staying on top of her diabetes management, then that is what I have to do, her life literally depends on it.

But Like I told Evangeline, we don't get to feel sorry for ourselves. We can get sad, mad and cry but then we have to give it to God, ask Him to comfort us and give us the strength we need to live another day for Him and to live it to it's fullest. I don't know why she has diabetes but He does. God is using my Little E and I know He will use this disease to touch others as He already has.

I call times like this the readjustment time. We all have to readjust. I tweak her insulin doses that is given to her through her pump, I get up at 4am to check her blood sugar, I check her blood sugar before her meals for a few days and watch her give her insulin via her pump for a few days, then once we have her numbers back under control and her managing it again, life gets back to normal for us, a family living with diabetes.

Comments

Anonymous said…
hey mom that was qa very good post!!!!!!
Anonymous said…
That's quite a cross for a little girl to carry. As always, God knows what He is doing and gave Evangeline to parents that love her enough to do the not-so-easy-, gut-wrenching things that have to be done in order to keep her healthy and alive! She seems like such an amazing child! I had just a small and temporary taste of life with diabetes when I was pregnant with our youngest son. At about 5 months along, I was diagnosed with gestational diabetes. Thankfully, it was able to be controlled by my diet. It was not fun, to say the least...and I was a 35 year old woman, not a little girl. My heart goes out to Evangeline and to you too. But, more importantly than my heart, my very sincere prayers go up for ALL of you! Like you said, only HE knows why she has this disease and only HE can heal her. I also pray that she (and you & Dean) will continue to be brave and strong as she continues her daily struggle with diabetes and that HE will wrap her in HIS grace every single day and that HE will instill a sense of peace and calmness in her heart.

Lesley :-)
Anonymous said…
Hey Carole,
I really do pray for our little Evangeline! What a sweet blessing. And I also pray our girls like my Cara will always be there for her to lift her up in these next coming teenage years. That has to be so tough. But I know God has a huge plan and I bet it is so much bigger than we can even imagine. Keep your head up E! We love you and your the best!
Robyn A
Anonymous said…
It always amazes me how strong you all are in this. I love how you tackled it as best as you could, and are living with it. I can remember the late nights when you were on the diabetes chatrooms. You have learned everything you possibly can in order to be equipped. I could not ask for a better example of a mom. Press on, Sue.
Anonymous said…
It made me cry to read this. I remember the night at the hospital and the first shot you had to give her. The look on your face and both of us trying not to cry.
God gave her to you and Dean for a reason and he knew y'all would take good care of our baby E.
I love y'all so much. Love MOM
Anonymous said…
I can feel every ounce of emotion in this post. I have type 1, a pump and a crazy lifestyle because of it.

You're doing a great job keeping this in perspective and also control. She'll have some amazing self-control as she grows up.

Very good wording in your writing.
Anonymous said…
Carole,

That's so wild.... I've been reading your blogs for a short while now, but I didn't realize E had Diabetes until I saw your link on the side of the page. I too have Type 1 Diabetes.... and now they're saying I have Type 2 as well. Or as they call it Type 2 1/2 or Type 3. Weird I know, I didn't even know until recently about this new development.

Anyway, my point in writing is b/c I am also on an insulin pump like Evangeline. And I have been on it for years... got off for a while, but am back on now. Point, I was diagnosed when I was 13 and think that was an EXTREMELY hard time for me to be diagnosed. As I read what you were saying about E and all of her friends eating whatever and whenever they want... it was like a time warp for me, b/c I haven't remembered those feelings for a while, until just now. It was very hard... BUT, be encouraged, the older E gets, hopefully it will get easier on her, as it has on me through the years. I used to break down often times to my mom, the same way E did to you, but I never really have such strong feelings about Diabetes anymore. Yes, I hate it... and often times I get reallllllly annoyed with my pump, as I don't wear it on my pants anymore. When E gets a little older I'm sure she'll find some places to hide it like I have... if you get my drift... ;) And I remember people at school saying, is that a beeper?!? You can't wear beepers at school!!??!! I remember getting so mad, remembering saying to them, (sarcasm all over the place) "Ok, what beeper have you seen that has a tube sticking out of it?" or I'd say, "Well I can wear a beeper, the teachers like me!" ha! Ahhhh, middle school, high school, craziness. Anyway, figured I'd share a bit of that with you. And if E ever needs a fellow pumper to talk to, I'm totally here!

Love your blogs, and keep it up!