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Sunday, February 13, 2011

How sad is too sad?

"I just hate this so much".

Elise said this to me today as I was changing her pants and underwear for the second time in three hours. Her blood sugar has been soaring after lunch for some reason, and today Fred and I got busy cleaning out the garage to remember to ask Elise if she needed to go potty.

She was having too much fun helping us, and didn't want to go inside. Both times she stared to bawl, telling me she was sorry. I hugged her and told her that it wasn't her fault. That when her blood sugar is high, it makes her body need to go pee pee more often. I let her know that we weren't mad, and we should have been the ones to take her to the potty.

That's when she told me that she hated this (diabetes). It's enough to make your heart wither and die.

And yesterday I noticed she had been in a funk all morning. In an attempt to draw her out, I took her grocery shopping with me; just us girls. It was like pulling teeth trying to get her to talk.

First she said she was sad that Mattias's eyes weren't changing colour (she has green, he has blue, and she wants his to look like hers. Anyway you look at it, it's a strange thing to say).

Then she said she was sad she didn't have a sister. Mmmm, okay. We'll get right on that.

Then she lowered her head and was very quiet. And in a very small voice she said, "I don't like having diabetes. I want to be like all the kids at school. I don't want to have this."

I said most of the same things I had said the other day. She asked me why she has diabetes. I told her I didn't know. I told her that diabetes is a part of her. A hard part, but one that makes her so special. She seemed to think about this, and as we held hands and walked into the store she told me,

"I am special. I have diabetes. God loves me and you and Poppa love me and diabetes helps me to be special."

She seemed okay from that point on, but I wondering... is it normal for a 3 year old to be this consumed by it? I understand being sad every once in awhile, but she has said something almost every day.

When did your child start being sad/angry about diabetes? How often do they mention it? I'm wondering if I should take Elise to see a professional to help her with these feelings. Has anyone done this? Does anyone have any other tips that I could use to help Elise?

It's just breaking my heart and I don't know how to help her.

19 comments:

  1. Sniffle, sniffle. I'm so sorry. You handled this well. She is a lucky girl to have such wonderful parents.

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  2. Oh, hon. That just about broke my heart. I think you are doing the exact right thing by letting her talk, and talking to her.

    Adam hasn't really ever said much about his diabetes (yet). He just seems to accept it and moves on. However, I think this is in LARGE part due to his personality. He's a 2nd child...and he's just so incredibly easygoing. I've always said, if diabetes happened to my older daughter, we'd be in a whole different ballgame. She's very emotional, very anxious...and that's just her personality. (and not that I am saying that Elise is in ANY way like my daughter) I'm just saying that it's probably a personality thing. And I think it's totally normal....and frankly GOOD that she's expressing her feelings to you. We have a very hard time getting Sydney (who's 7) to express herself, and it makes things much harder to figure out.

    Geesh, I wrote a novel. :) Sorry 'bout that! (((hugs)))

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  3. ((hugs)) Being 6 when she was dx, Bekah was pretty upset at first and we screamed and cried together in the hospital. I told her how much I hated it with her but it was what we had to do to take care of her. She has days where she is mad and sad and we just let her feel what she needs to feel. Bekah will hide under the table when she is overwhelmed with the feeling s that diabetes brings up. Our kids have to go through the grief that we do, just in their own way. Being the awesome supportive parents that you are, you and Fred will gracefully guide her through those days of sadness or madness or what ever she is feeling.

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  4. First off, I am really thinking back to Joe at three, four, and five... He has had a couple of incidents where he hated "d"...but for the most part he doesn't really acknowledge it. I think it is him being male and him being so absorbed in living his life balls to the wall. If it were Bridge, it would be a different story for sure.

    Does your endo group work with a pschotherapist? It definitely could not hurt for Elise to talk it out...however...Jo...it sounds to me like you are doing a wonderful job of giving her opportunities and freedoms to express herself. I love you. I love Elise. (((HUGS))) I am kind of sad too after reading this post! I hate seeing three year olds sad...

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  5. I am so sorry Elise is feeling so sad lately about her diabetes. That just breaks my heart. I don't have any good advice really...I have been there with Emma though. It's been almost 3 years for us, and every once and a while out of the blue she will bring it up and cry. I just do exactly what you did though...hold her, cry with her, let her get it out. You are showing Elise that you will always be there to listen no matter what...and that you will always comfort her...that is a great thing. If you feel in your heart that it would be best for her to talk to someone though, I would definitely do that too. You are an AMAZING Mommy and you have an AMAZING girl. HUGE HUGS to you both!!!

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  6. I think you have done a great job of allowing her to "vent" in a 3 year old way. I agree that I think it would be a good idea for her to participate in some sort of a child group.. soley or as a group of kids. You live so close to so many other D moms you could really create one yourself. A support group of sorts. I have been looking and in our area they have them for the adults but not for kids. I think the kids the younger ones for sure need their own group. Not sure if this helps but i know I am already concerned for J at only 2 and when he will be feeling this! I love you and am praying for you

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  7. If she continues to talk about it a lot... it might not hurt her to talk to someone. Now that she is in school she has more opportunity to compare herself to others. D isn't fair AT ALL and she is a smart little girl.

    Maybe... Is there anything you can do to allow her to have the same snacks at school as the other kids rather than a pre packaged choice? Even if it throws her numbers off a bit... its better than her being sad. My Endo says Justin is a kid first and a diabetic second.

    Big hugs Joanne.

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  8. oh, Joann, that is sad and I can't imagine those conversations with Isaac, yet...I don't know what I'll say. I just wish I could hug you and her right now. I think her comments are perfect just for her, she is mature, much more than the "typical" three year old. Again, big hugs...I wish there was more I could say/do.

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  9. I'm sorry Joanne. I know your heart hurts so bad for her! I think talking with her is the best thing you can do. I also wonder if maybe some art threpy would be valuable? Maybe contact Lee Ann Thill? I bet she would have some wonderful ideas!

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  10. :-(
    I think you are handling it great by letting her feel what she feels and reminding her she is special no matter/ because of D.
    Much like Reyna's Joe, my son doesn't really acknowledge it...sometimes he loves diabetes (cuz he gets sweets and carries gadgets), others he hates it, but mostly it just is and he doesn't give it a second thought...

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  11. Im sorry. My heart hurts reading this. J has days like this when he has a lot of lows and I let him punch a pillow and scream. Works for him.

    Iwish i knew what to say.((hugs))

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  12. It's sad that Elise is so in touch with her feelings that she is sad. I think a lot of kids bury or ignore their feelings about diabetes. At some point, these feelings will surface, even years later. At some point these feelings, which are natural, will come to the surface. And you have to deal with them. So, yes, if therapy helps or find some outlet to help her. Our girl never expresses anger at having D, I think she thinks of it as being a part of her, rather than a condition she has. But does express frustration at the inconveniece D causes. And there is a certain moodyness which you could attribute to fluctuating blood sugars, or because having D is a PITA and upsetting sometimes. At some point in time, I do believe therapy will be helpful, for all children with D. Better to deal with it earlier than later on. This really is too much for such a very young child, a baby really, to have to deal with. It's so hard.

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  13. I wanted to share this little story with you to maybe see that Elise's talk about d isn't out of the ordinary for a three year old dealing with a chronic medical condition...
    My niece turned 3 on Monday. She was born without a fully formed foot and had to have an amputation and prosthetic limb (which she calls leggy) since she was a year old. So, Monday she announced to her mom, "Now that I am a big girl I am all ready to have a real foot. No more leggy, okay?" I think she was as perplexed as you about how to respond, how to help her "feel" better, how to keep going knowing there was no way to truly fix what her daughter wants fixed. I think that the only conclusion my sister-in-law came to is to get her daughter around more people adults, teens and children with prosthetics. She is reaching out to find an older child who is willing to mentor and is also signing them up for a few local events.
    I guess the thing is that there are no answers. You are an amazing mother and you alls you can do is keep showering her with all your love and understanding. (((HUGS)))

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  14. Awww :( These stories break my heart! Ally was dx at 5, so I don't have experience with the younger age. However, Ally goes through phases where she seems to focus on it more than other times. Sometimes I will hear her tell people that its no big deal, she can do what everybody else can. And other times she writes me notes saying that she thinks we all hate her! I like the idea that others mentioned about introducing her to other T1 kiddos..that she can relate to. I also have been talking to my endo about this...our group has a social worker (or something of that nature!) and they recommend that we see him at least once a year. I like this idea because Ally will get to know him and it will seem like a natural part of our visits rather than forcing it upon her when I think we have a problem. But beyond all of that...I think you are doing a fantastic job of just letting her release her frustrations and being there to listen. Big Hugs!

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  15. My son was just diagnosed in Nov. 2010. He has said things break my heart too. He told me one day that God knew he was going to get diabetes. I was afraid that he would turn away from God. I told him that God has provided everything that is needed in order to take care of him. God does not love him any less and that God ALWAYS uses bad things for good. I know it's hard when the child is younger like yours. Hang in there, you're doing a GREAT JOB!

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  16. For her to respond to what you said by saying,"I'm special. God loves me. You love me." I think there is no way to understand or "get it." It's not fair and it doesn't make sense. So you have to hold on to what you do have and help her cultivate an attitude of thanksgiving. It like the idea of spending more time with other people who are not "normal" and have their own special challenges to overcome. I know when I've questioned "Why God? Why this? Why me?" It's helped me to see others who have struggles, too...I think it normalizes it and helps you feel more grateful. I think you are doing a great job.

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  17. I was 12 when I was diagnosed, and for some reason I don't really remember ever being sad about it.

    That said, I had a hell of a time as a teenager, and I think I funneled some of my diabetes funk into my general unhappiness.

    I'm so sorry that she (and you) are feeling this way. I wish I had an answer that would make you both feel better.

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  18. I think you are doing the right thing by allowing her to talk, cry, shout out her feelings, and encouraging her to express her feelings about diabetes. My son is 5, was dx at 3 1/2. We've definitely had our days like this, more frequently when he was first diagnosed.MY attempt at giving him a feeling of empowerment over his diabetes has always been to educate him. I am new to reading your blog, so I dont know everything that you guys do with her, and allow her to do for herself (with guidance and supervision of course!), but, for us, since the day we brought him home from the hospital at 3 1/2 years old, we were encouraging him to try to do some things himself. At first, it was picking out what snacks he wanted throughout the day, and what he got to eat for lunch. I would portion it all out, or help him use measuring cups so he could feel like he was doing something too. Then, we asked him if he wanted to learn how to check his own blood sugar. By the time he was 4 years old, he was able to check his own blood sugar. About 2 months after he was diagnosed, I contacted the JDRF and requested their care bag for newly diagnosed kids (i cant remember the name of it off the top of my head, I think it was Bag of Hope?) Inside that bag had the BEST gift I could have ever possibly got for him. The Rufus Bear, the bear with diabetes! He STILL, to this day, sleeps with that bear and is so close to that bear! I told him when he first got it that he could always talk to Rufus about his diabetes, his feelings, etc. because rufus would understand because he has diabetes too. We started using the bear to "practice" giving shots (and for mommy and daddy's sake, to help him adjust and relax about getting so many shots a day!). That bear has been a lifesaver for this family! I used to keep a seperate syringe aside so Lenny could give rufus a shot first, before he got his own shot. Then, by the time he was about 6 months into diagnosis, we started teaching him where to look on food labels to find out how many carbs, proteins, and fats are in what he is eating. One day, out of the blue, while we were grocery shopping, he saw me pick up a box of velveeta mac n cheese.... he hollared out in the middle of the store "MOM! This has xxx carbs in it!" And ya know, whatever that amount was, he was correct!

    I think, like us adults, for the kids, knowledge is power as well. I think the more I teach lenny, and allow him to "take control" over his diabetes, even in the most simplest ways like picking out his snacks, it has been a great way for him to cope, learn, and deal with his diabetes.

    Now, we still have days where he says he hates diabetes. I think we all do. But, I think the more he learns, the more we teach him, the less frequently those remarks seem to happen. Now, its usually just when he has to have his site changed LOL! His attitude toward him having diabetes has improved so much, in fact, that I get phone calls from his school nurses frequently praising us and him on how well he does with his diabetes, his attitude toward it, etc.

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  19. Oh Joanne....we really need to plan another lunchdate. Maybe it would help Elise to see Matthew again.....

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