How long do we ask why?

momma-rae
By momma-rae Latest Reply 2010-01-06 10:41:39 -0600
Started 2010-01-05 14:05:47 -0600

Hello- I am the mother of a 5 yr old little girl Mykie who was diagnosed at age 3. We are going on a yr and half now. I was luckily enough to be diagnosed in Germany where we sent 30 days in the hospital learning about diabetes everything from diet to exercise and the medical aspect of the diseses but the area lacking was the support. I also have a medical back ground so I understand that part of diabetes. I do not have a family history nr does her father. Mykie was diagnosed after an allergic reaction to medication for H. Pylori prior to being diagnosed she had great glucose levels no highs no lows and she was test quite often just prior do to her stomach issues.
I am also a single parent, i have a 10yr old son (who hates the extra attention his sister gets) and I am in the Army. There was no support group in english in Germany when she was diagnosed, and soon I found myself on a plane back to the US due to insurence and pump issues. When i first got here the medical facility I was assigned to (cause of my daughter diabetes) informed me that they do not see children under the age of 10 for diabetes and that a docter came down once every few months from a different state. finally I found a docter off base that will see her and had a support group, I went to the group a few time looking for help and only found people sitting around talking about anything but diabetes. I so bad want to be at home with her I hate not being there when she has highs or lows, I do not like my job but in 5 yrs I will retire and then will have medical for her until at least she is 21. But why, how do the handle the days to come, heck growth spurts are killing me now, how do I handle puberty? how do you handle the WHY from her and the I dont want diabites and now it is I want to go live with Santa cause he can take it away


13 replies

momma-rae
momma-rae 2010-01-05 19:58:23 -0600 Report

ok I have another part of my problem even thou I am falling in love with this site, it is also causing more of my fears to rise up. I want nothing more for my daughter then a normal life and the more i read on this site the more I see the glass as being half empty. It seem that no matter what we do or how well we treat this dieses there is so much to lok forward to (not) hot flashes, lack of sex drive, puberty issue, not to mention the horrible side effects if for some reason she does not control when she gets older. Yes I know mykie is just 5 now and she has years till she has to worry about most of these issues, but as it stands I guess more then anything I am in the mind set that i dont want her to grow up anymore I dont want her to have to face these issues one day. I know they are working on cures and all but i dont see it in her life time, Honestly i see them preventing it before they find a cure for those that already have it, also i know that in todays world she has a better chance then she had 10-15 yrs ago. I have read the horrible stories of before GM and before pumps etc. I also truly beleive that RIGHT NOW we run her diabetes not the other way around but will it always be that way

redglitter
redglitter 2010-01-06 10:41:39 -0600 Report

Hi momma-rae,

I'm not a mom, but I hope you won't mind me replying anyway. Please don't let the scary stuff run you off from this site. Not everyone will develop all these problems but it's good to know what "can" happen and how to handle it if it does. You are already your daughter's staunch supporter and doing a fine job and you have to be as informed as possible to help her.
About puberty woes and such, well she's just five so you have some breathing room there. Cross those bridges when you come to them. That is my advice because you can really drive yourself nuts worrying about all the "what if's" of the future. I do this myself.
I think it's great that you have a rapport with her teachers and have informed them how to treat your daughter. Good going!
I hope it doesn't sound as if I'm making light of your (her) situation because I'm surely not. I just hate to see anyone have extra stress added to their already full plate.
You can only control so much, so control what you can. That is as much as you can do.
I hope you will keep coming here because there is a wealth of info to be found and even though I've only been back for a few days, I don't think you'll find a better source of moral support.
And you sound like a wonderful mother. :)

momma-rae
momma-rae 2010-01-05 18:26:47 -0600 Report

i want to hank everyone I helps just knowing I am not the only one which is how it feels sometimes. Since my daughter was diagnosed I got married and he left me once he found out exactly how much work it is and how Mykie can limit his military career. so it has been a struggle but I can handle to single mom part I just wish I could be there more, there are the nights where u are up testing every hour and trying to fix an attack then i am off to work the next day and she is either at school or the sitters and i am just waiting for the phone to ring. I have been through 3 sitters cause they could not grasp the concept of type I. she eats she needs insulin. once again thank you all

Harlen
Harlen 2010-01-05 17:43:30 -0600 Report

Hello
I cant add much more then whats been sed but your in my prayrs all the same
best wishes
Harlen

BuddyK
BuddyK 2010-01-05 16:46:14 -0600 Report

John C gave a great reply. I was 6, now I am 63. Teen age years for me were irresponsible. I remember stopping for a Twinkee and Coke while going to the bus for summer school. The good/bad person in relation to blood sugar was a very negative thing for me. That was the abstract. The reality was the way I felt after the Twinkee and the coke.
I didn't know another diabetic until I was in my 20's. This site is the first mention I have ever seen of how others feel when blood sugar is too high or low. Just knowing how others feel and deal with the challenges that become an accepted part of our lives is a gift.
I was one of the last polio children, and one doctor gave that as a "cause". Every development can be a negative or a tool developed for greater things. 80 years ago nobody knew what was happening with us and there was no treatment. When I was a kid there were "Diabetic" camps, a camp with certified medical observers and staff and more importently, other diabetic kids. What John says about kids learning to do things for themselves and why they do it is very importent.

Monalisa
Monalisa 2010-01-05 16:16:09 -0600 Report

Dear Momma-rae, I think that the best you can do is always,always, always explain everything to her even at her short age you can do this in easy to understand ways, and always include her in the decisions you make for her meals, excersize, ect. let her know why you chose this or that, this way when she grows older she will see diabetes as a normal thing in her life, develop a good relationship with her and let her know when she is older that you can't always be watching her back and she needs to be responsible for her ways.
As for your son, you should try explaining diabetes to him with visuals and learning materials, you can measure his Bs once with the meter so he will know how it feels to prick your fingers everyday, and let him know that he is as important to you as your daughter, also include him in her daily care and meal planning, be creative…Children are like sponges, they absorb everything you teach them.
Sorry I got carried away, good luck to you and if you need to vent we are here for you, Welcome to our DC home and God bless you and your children…Receive a hug…LISA

momma-rae
momma-rae 2010-01-05 15:06:55 -0600 Report

think part of the hard part is since I work in a hospital I see the 18-20 yrs olds that just give up once they get on their own or feel like it is not worth the hassle of trying to fit in and up in ICU. I see people with blood suger over 1000 and under 20 that come in. right now it rather easy I think with her cause I am stil mom and I stil know what is best but one day that will change. I think part of the hardest part is the feeling of fear of the future. I know I can only take it one day at a time and go from there but it seems that it is easier to say then do

John Crowley
John CrowleyCA 2010-01-05 15:30:49 -0600 Report

You are so right. There are definitely young people who "rebel" against diabetes. Our son is a busy senior in high school now. And there are days that he just pretends he doesn't have diabetes. (Not too often mind you, but occasionally.) But he always comes around and takes responsibility.

I know we've been far from perfect when it comes to raising a child with diabetes. But there are a few things we've "tried" to do that I feel have helped. First, we have been very careful not to define our son by the disease. He's never been "our diabetic son" or "The Diabetic." He's a person first with lots of different aspects--and only one of those happens to be diabetes.

Second, we've tried to use his blood sugar numbers as a tool to help control blood sugar--never as a measure of whether he's a "good" or "bad" kid. If he has a high blood sugar, we try to learn from it and make a plan to avoid making the same mistakes in the future. This can be very hard. Sometimes you really want to rant and rave. But that always seems to send the wrong message, and rarely brings about a better outcome the next time.

Finally, we've seen some parents who make every food and insulin dosage decision for their kid--even when their kid is well into his/her teenage years. The child never learns to make their own decisions and as a result, when they have the freedom to make their own decisions, they have no idea what is a healthy choice. That's why the most important job of parents is to help their children learn to make good decisions on their own.

I didn't mean to write a novel :-) And like I said, I know we've been far from perfect. But hopefully there's something there that you find useful.

momma-rae
momma-rae 2010-01-05 18:21:16 -0600 Report

thanks i can understand that. There was a family in my support group when it was active that had a teen age daughter and the mother ran it all she even did the glucose testing for her, the mom had to come to school everyday and everything. semed like nonesense to me. My daughter started school this yr and I made it a point to all of her teachers that she is to have as normal of childhood as possible, if she is acting up and her suger is normal then she is to be treated like all the rest if you are giving out candy as treat she can have one but be prepared for a high suger leve either at lunch or before she heads home.

spiritwalker
spiritwalker 2010-01-05 14:53:09 -0600 Report

I think its harder on children. They can not understand why.
Welcome this is a great site. Everyone is supportive and
willing to share.

John Crowley
John CrowleyCA 2010-01-05 14:52:57 -0600 Report

Welcome, momma-rae.

Our son was 8-years-old when he was diagnosed. And it was plenty difficult for him to process and deal with this enormous change in his life overnight. I can't imagine how tough it would be with a 3 year old. Then adding on top of that a move out of the country, new house, new friends, new doctors. Wow.

I wish I had some great wisdom to share with you. But I guess all I have is to tell you to trust your instincts as a mother. And be open and honest with your healthcare team. I know our nurses and doctors have helped us a lot over the years to put things into perspective.

Your daughter will get through this with your help. She'll learn to accept it and to take care of herself. She'll eventually be much better at it than you. Your most important job is to prepare her for that time when she'll take care of it herself.

We're here for you. Don't hesitate to come for support and ideas. We're always good for an opinion or two :-)

Hang in there.

Sam Stokes
Sam Stokes 2010-01-05 14:39:24 -0600 Report

Jim done a great job of sharing, on the food part,the best food for us is the real foods , fruits(except for bananas,watermelon ),nuts (all but peanuts) beans and greens. I'm no expert just a lot of trial and error,Most of the foods are mentioned of the other discussions , welcome to the community.

ptsparkle
ptsparkle 2010-01-05 14:22:05 -0600 Report

Those are all tough questions. First, I admire you for being a single Mom, and for serving in the Military. Sounds like you are doing a fantastic job raising them. Holding out another five years will be the smartest thing you can do. I have a five year old grandson living at home with his single Mom. it is tough on kids without a Dad. I am no substitute for a Dad, but I try my best to give him a Male influence in things.
Why? Why does the sun come up in the morning, why are some kids perfectly healthy, why are some kids born with severe handicaps? I'm sure you do your best in explaining diabetes to your daughter. Perhaps you could take her to a childrens hospital,or ward, and have her see other children who are in worse conditions than her. Diabetes is the pitts no matter the age. She just has to realize that it's a part of her life, but as she adapts, she will be just as normal as the next kid. Sure there is the testing and shots, but from what Iv'e learned here, the pump will be a blessing in her life.
No family support can be the pitts also. Have you looked in to a church in your area or of your faith? They can be a big support. Hope this helps just a bit. best wishes, and give that little girl a hug from me, and tell her I said she is a cutie!!
Jim

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