I've missed this... I need to share our stories with you.
I need to tell someone who understands. Someone who gets it.
Last time I posted, I shared a scary experience we had when we were in Florida dealing with a very stubborn low.
I was scared. Nervous. It's been awhile since I felt like that...
J was scared, too. And so was my Mom.
What I didn't realize at the time was that Sweets was scared as well.
We woke her up to drink and eat. When she's that low, it's best to have her awake. If she is not fully awake it's hard to tell if she's lucid and she fights us with the eating a lot more because she just wants us to leave her alone. So Sweets was awake the entire hour and half. We were all sitting on our bed (It's two twins pushed together to make a King - the three of us share it in Florida because there are only 2 bedrooms.) watching TV. Mom and I took turns rubbing and scratching her back.
We do our very best to remain calm and appear to be calm in these situations.
We don't get upset. We don't raise our voices. We don't run around in a panic or voice any concerns out loud.
I thought we were doing a good job at this.
Apparently not.
The next day, Sweets stayed with my parents for a couple of hours while J and I ran to the store.
We were gone about 2 hours. That's it.
All those Smarties finally kicked in and her bg skyrocketed to about 550 in the early morning hours. We had brought her back down only to miscalculate lunch carbs (totally my fault). So she was high while we were gone.
She beeped high and Mom checked her out. She was in the 300's and it had been a bit since lunch so she knew something was not right.
But that wasn't all.
SWEETS was not right. She was acting off due in part to having a high bg. But there was more to it than that.
They were talking and Sweets said something to them about her having a "heart attack" last night.
"What?" Mom asked. "A heart attack?"
"Yeah." Sweets replied. "I had a heart attack."
Mom reassured her that she did NOT have a heart attack and they discussed what a heart attack really is.
"Do you mean when you were low last night?" Mom asked. "Yeah - that's it." Sweets said.
Mom said that it was almost like she had a panic attack. When she beeped high and Mom didn't know what exactly to do to treat it, Sweets freaked out. She told Mom that she needed to her Mom and Dad right away and find out what to do. She said she was all a flutter and unable to relax. And she didn't really calm down until we got home.
When I heard this, I just felt the wind go out of my sails.
I try so hard to remain calm and serene and not let diabetes scare her. The only thing I had done that night that was even a little "un" calm was to tell her that she needed to sit up and eat the Smarties NOW - because she was telling me she was too tired and would eat them in the morning.
At the time she didn't appear to be worried or stressed. She watched a little Disney channel. She wanted to go to sleep. But that was it.
So it makes me wonder...
What else is she worried about that she's not sharing with us? Is she worried about diabetes? Does it scare her? Am I doing something that is causing her to be afraid?
I just don't know...
Sometimes I think that if all we had to deal with was the physical part of diabetes, it would be an easier disease to manage. It's the emotional part that brings me to my knees much more often.
It breaks my heart to think that she is afraid. It kills me to think that she worries about other people taking care of her.... No, not just other people - her GRANDPARENTS! The only people who, other than a couple of wonderful friends, can actually watch her! I want her to feel safe and secure. She needs that independence...
I don't exactly know where to go from here... I try to continue to reassure her through words and actions that she is fine. I encourage her to talk about it if she wants to. I'm really not sure what else there is to do...
I suppose it's just a part of raising a child with diabetes.
She's growing up and she is becoming more aware. Of course, as her Mommy, there is a part of me that wants to shield her forever!
But I also want for her to grow with this disease and feel the confidence and pride she will gain from knowing she is able to care for herself - diabetes and all. I want her to feel that smug, "Yeah, I have diabetes. But I got this. I can do anything you can do."
Baby steps, I suppose.
There will always be fear. But as long as we all keep getting back up again and moving forward after fear has knocked us down, we're doing just fine....
Even if we do encounter a few "heart attacks" along the way.
The emotional side, is SO hard. Maddison has had a fear of sleeping alone for a long time now. It started with her asking why I wanted a baby monitor in her room at night. So true that even though we may not say anything, our kids still know the answer. Just another reason why our D kids grow up too fast. :(
ReplyDeleteHi! My 6 year old granddaughter has D too. Since she was 3 yrs old. I just found your blog a bit ago and am slowly catching up on past blog posts. I'm trying to learn all I can along the way. I have a few questions to ask you but right now I wanted to ask why your daughter went so low in the night. Is she a brittle D? Does she normally have high highs and low lows? Is that why she wears the monitor? My G has the pump also.
ReplyDeleteWhen your daughter said she had a heart attack ... That made me wonder if that is what her low felt like? .... Maybe you did everything right and you were completely calm but she was feeling really really bad .... And she is worried about feeling that way again .... Suppose that may not be very comforting ... Just another perspective ... God bless
ReplyDeleteVery good point! I hadn't thought of it. My mom asked her if she knew what a heart attack was and she did not... but maybe it was a sort of description of feeling yucky.
DeleteYes, very good thought! That is how my low woke me up one night- it was my heard that was pounding out of control. I literally felt my heart waking me up. My prayers for her is that as the time goes by, she feels more confident in treating her lows. Sometimes I have to tell myself that it is going to be ok when I get low as well.
Deleteughh i hear you. the emotional side of this disease is unbelievably hard. My Emma is 8 and I wonder what goes through her mind about her highs and lows and day to day dealings with this disease. ahhh we need a cure :o(
ReplyDeleteoh bless you
ReplyDeleteListen - well first HUGS. Okay know listen: panic attacks are very really and can get worse over time if not treated early. I know because Lauren suffered from them TERRIBLY (after 9;11 and almost losing her dad -- but I've since learned it's as chemical as, well diabetes is. If she felt that, seh's a smart little girl to explain it like a "heart attack" and not just a low. I would advice seeing her pedi and asking for a referal to a good child counselor/therapist. I didn't know (I thought Lauren was suffering altitude sickness with all our west ski trips) and she ended up in a crisis. She now knows self hypnosis and how to stay ahead of panic. I don't want to scare you -- it's easy to deal with once they learn how, okay? contact me if you want to talk more. HUGS.
ReplyDeleteSo what I am saying is the panic may have been coming even without a low. If she has panic, she will come to learn her "triggers." Lauren's was fear of losing air (not breathing) and strangely--- the sound skis make. How do you like that irony? I'm a professional skier and my daughter has panic attacks from the sound of skis.
ReplyDeleteI swear that we lead parallel lives :-) RED had the worst low she's ever had two weeks ago. She was a 206 and 40 minutes later she was a 36. It came on so suddenly and afterward she cried and cried because it scared her (and me...and her sister who she was playing with). She told me afterwards that she felt like she couldn't move and that it happened in "6 seconds" (this is a 5 1/2 yr olds perspective anyway)...that she was fine and then "in 6 seconds I couldn't get up off the floor." SCARY! We role played what to do if she was low and laying down and her body didn't work but her voice did...what to yell out, etc. That was the most scared I have been in two and a half years. It's hard to believe it's been two and a half years! Time flies...even when dealing with stuff that's not fun.
ReplyDeleteI have T1 and so does my 8 year old daughter. I wanted to share my personal night low feelings (as this may or may not be similar to what your daughter was feeling). I will sometimes get a bad low at night and when I wake up and check my bg I am usually very calm, even when I see the crappy number. Somewhere at the end of the juice box though, I feel a lot of unusual (for me) sx's; it's as if all the adrenaline hits me at once or maybe my body is trying to correct the bg finally. I am not sure why there is a delay, but when it comes it's like a huge wave hitting me and my heart is thumping and I feel short-of-breath. I almost feel like I can't talk or move well. It's kinda like being in a bad dream where your insides are telling you to run but your outsides aren't moving. I am not trying to scare you or sound dramatic. This is very unusual and only happens with those super bad night lows. Most lows are yucky but manageable. When I read this posting, however, I thought of how my chest just pumps and I wondered if she had experienced a similar sx and called it a heart attck. I'm glad you both have recovered. You're obviously a great and caring mom. Thanks for sharing your experiences; I have learned a lot from you!
ReplyDeleteAs a former child with type 1 diabetes (35 years ago, anyway), I can say that these concerns are a very normal response for a child and that you did exactly the right thing as a parent. The simple reality is that doctors, diabetes educators and nutritionists tend to marginalize how challenging it really is to manage a disease like this 24/7/365 (24/7/366 in a leap year!), perhaps to convey confidence in patients and caregivers. In any event, children are remarkably resilient and the best thing I can recommend for caregivers is to be the rock of support because kids will look to you to provide that, also to discuss these things (to the extent that a child can or will discuss them, if not let her know if she's ready to talk about them, you can do it anytime she wishes), and finally, remember that you don't want to make diabetes something they rebel from when they become teenagers. I would say job well done!
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