Not coping...

[LisaD40]

Hi my 12yr old daughter was diagnosed 12 months ago...we have been coping just and muddling through but the last 2 weeks I have been struggling. Always asking "why my little girl?", crying all the time, getting really angry about it all. Is this normal and will things get any easier? I just want to help her and feel I am doing a really poor job at the moment.

 

[catherinecherub]

Hi Lisa and welcome to the forum.

You are behaving like every other parent whose child has been diagnosed with Type1 diabetes, a normal reaction to an abnormal situation.
I expect it ids beginning to sink in that this is for life and, as all parents do, you ask yourself "Why". We all want the best for our children and when they are diagnosed with a chronic condition it is not unusual to feel guilty and wonder if we did something wrong.

There are plenty of parents here who will admit to feeling like you do and plenty of Type1 adults who can tell you that being diagnosed in childhood has not affected them to the extent that some parents think it will.

I'll bump your post up for replies.

CC.

 

[LisaD40]

Hi Lisa and welcome to the forum.

You are behaving like every other parent whose child has been diagnosed with Type1 diabetes, a normal reaction to an abnormal situation.
I expect it ids beginning to sink in that this is for life and, as all parents do, you ask yourself "Why". We all want the best for our children and when they are diagnosed with a chronic condition it is not unusual to feel guilty and wonder if we did something wrong.

There are plenty of parents here who will admit to feeling like you do and plenty of Type1 adults who can tell you that being diagnosed in childhood has not affected them to the extent that some parents think it will.

I'll bump your post up for replies.

CC.

Thank you so much...it really does help to know I am not alone and that this is normal x

 

[Robinredbreast]

Hi Lisa, please don't beat yourself up, its just a little blip. I have my 6 year old grandaughter with me at the moment and she was diagnosed at 2 1/2 years old, it broke my heart and I kept saying it was my fault as I have it and it's not fair !! But she took it very well and just gets on with it, kids are such tough little cookies . I really feel for you , I'm sure many parents go through a similar experience and I hope you feel a little better soon.x

Take care RRB

 

[Angiejean]

Thank you so much...it really does help to know I am not alone and that this is normal x

I feel like that all the time. We were just talking about it now with her older sister. She too is very upset. The whole family has been affected and you are right I just want it to go away. She copes really we'll it's me that can't cope. Every time her reading is hight it feels like the end do the world. 5 pre lunch at 12.30 then 16 before tea. I can't figure it out at all. I want some logic to it but there is none. I do wonder if I will ever be happy again like before this all happened.

 

[LisaD40]

I feel like that all the time. We were just talking about it now with her older sister. She too is very upset. The whole family has been affected and you are right I just want it to go away. She copes really we'll it's me that can't cope. Every time her reading is hight it feels like the end do the world. 5 pre lunch at 12.30 then 16 before tea. I can't figure it out at all. I want some logic to it but there is none. I do wonder if I will ever be happy again like before this all happened.

Although it's really supportive to know I am not on my own it's really upsetting to hear there are so many of us feeling like this. Our older son has taken it badly too...he can't bare to watch her test or inject and he has been on his own with her when she had quite a bad hypo which really scared him. His behaviour at school has really deteriorated as he is very angry and upset. Let's all support each other through these terribly difficult times xx

 

[Angiejean]

My elder daughter keeps it all bottled up then every so often explodes. I have tried to tell her not to get upset in front of her sister it case it scares her into thinking it is her fault that life if hard and it is hard every day. I also don't want her to be afraid of her feelings or to express them. We have been offered counselling and I am going to suggest that we all go individually as it is important to say how you feel without hurting someone's feelings if they are in the room. After my mum died I was offered counselling and I turned it down and I regret that but at the time ironically I was too busy with my young daughter who is the diabetic one. This time I am going to make the time as I don't want to feel like this forever. Do you find if the results are going ok then you are or do you feel bad all the time dispute the results . I find bad results really depress me.

 

[tim2000s]

As someone who was diagnosed at age 13, the other side of it is that of you involve your child in things like carb counting, they will learn a great deal about how to manage their diabetes very quickly. The more involved they feel the more likely they are to be better equipped to balance themselves. The other thing is that your daughter isn't blaming you for it. She is simply getting on with coping. The more you support her in that, the easier it is for you both.

At no point do I ever remember blaming my family. I was upset when I found out, but there is an incredible amount of resilience when you are young and you just get on with it. As an aside, she probably doesn't realise just how hard you are finding it. I was so focused on me and living with it that I didn't notice the effect on my family. Having discussed it with my family since I realise just how much every single person cared and that it had an impact on them.

Sent from my D6603 using Tapatalk

 

[Jaylee]

Hi,

I second @tim2000s comment above..

I was diagnosed on my 8th birthday as a sibling in a busy family. I took control of the wheel straight away after picking up on the "parental emotion". Kids have a habit of that sort of thing.
I can't honestly say my sisters were affected by it all. Though they were a pain when they alerted my mum if i didn't come home at night in my teens.. lol

In perspective, now i'm a middle aged healthy bloke with an elderly mother to which we afford her own dignity & decision making in independence.. (I only live about 20 minutes away.) Now mum's the pain in the **** when she stays out all night.!

 

[stephsmum]

Hi Lisa, bit late to join this one....does your D team have a psychologist? If they do you'll find that they see mum's as well as the child! Also, you might find your DSN is just as supportive and willing to have a chat about your feelings. There are 2 lovely groups on Facebook run by the same person, and her daughter runs a group for teens. Diabetic Mums UK and Parents of Type 1 Teens.

 

[Scoobyzoo]

Hi Lisa, my daughter was diagnosed 10 months ago at age 12. I am the same as you I really don't think I will ever accept it. I find myself constantly asking why and now have what I call a life sentence worrying if my other two children will develop it. I suppose we are both at the same stage with the same age of child it's very hard, I would love to go back to the days diabetes didn't rule your life.

 

[donnellysdogs]

Your children want to be treated as 'normal'...they don't want the burden of diabetes either.

They learn a lot of their parents... Even your body language.. Some of their reactions they will actually be picking up from you....

Unfortunately parents alwayshave to show a lets get on with it attitude...and show that a siblings diabetes is not anything that takes your love away from them... It can be seen that way by siblings... Although it may just be a 5 min test and jab...it is attention diverted away from their normal life.

You will always feel a degree of why my child. My mum does with me 30+ years on from my diagnosis. I had to tell her (unfortunately it was 28 years before I did!!) that foremost I am her daughter... Not her diabetic daughter.

There are some small things that can be done.... Like recording of blood tests... If your daughter has a hood blood testing machine it should have all the data stored in it.. So instead of writing it down infront of children.. Do it when they are in bed... If your daughter is writing down the data herself don't make it an issue that she has to do it at a set time etc as that time then is seen as diabetes time... It's trying to minimise the efforts and time around diabetes that could be disrupting your childrens lives....

If your children are playing and having fun and its time for a blood test... Don't be adamant and rigid that the blood test has to be done then.... Allow some flexibility.

Speak to your HCP's regarding the higher levels... Do this when children aren't around if possible.... So thst again, its not diverted time and that they don't see you as being anxious. If they see you worried with levels at 16 they can also pick up on this....from your reactions to low's and high's whether its your wording or body language.. They will be picking up on it all.

Cry time is needed for parents....it is a disease that effectively has been a bad gene... But boy, its liveable and your child can still have a great life... And diabetes can make us in to more caring, compassionate human beings... It did for me. Don't beat yourself up over a bad gene.... There's a lot worse diseases that children can have.

I take it that you know how to carb count and how to adjust doses? Or is your daughter on doses that are set by your HCP's?

Many children are being offered pumps. I have a great friend whose child went on to a pump at 8 and it enables her daughter to have more of a discreet diabetes.... Her daughter now 11 doesn't have to get out injections etc.. Just gets out a gadget that looks like a phone to give her bolus for food...my friend (the mum) sits fown in the evenings with the remote control.. Looks at the data and makes any adjustments necessary for the next day. So it reduces the stress on her daughter. We met through this forum, never actually met up but phone, text and email at least once a week, probably a lot more actually. Her daughter and I tend to actually run in tandem with pump problems. If I have a pump failure.. (last week) then odds are on that her daughter will too within a couple of days.. If my levels dip due to summer months.. Then her daughters will be doing the same so we have a chat by some mean and put the world of diabetes to right!!! And a lot more nowadays!!

Its not the end of the world, just the start to a lifestyle of being a bit more aware of health.. Which isn't a bad thing nowadays...

You'll get huge support here and there's a lot of us around!!

It is life changing but not life ending.. Take carexx

 

[Angiejean]

Your children want to be treated as 'normal'...they don't want the burden of diabetes either.

They learn a lot of their parents... Even your body language.. Some of their reactions they will actually be picking up from you....

Unfortunately parents alwayshave to show a lets get on with it attitude...and show that a siblings diabetes is not anything that takes your love away from them... It can be seen that way by siblings... Although it may just be a 5 min test and jab...it is attention diverted away from their normal life.

You will always feel a degree of why my child. My mum does with me 30+ years on from my diagnosis. I had to tell her (unfortunately it was 28 years before I did!!) that foremost I am her daughter... Not her diabetic daughter.

There are some small things that can be done.... Like recording of blood tests... If your daughter has a hood blood testing machine it should have all the data stored in it.. So instead of writing it down infront of children.. Do it when they are in bed... If your daughter is writing down the data herself don't make it an issue that she has to do it at a set time etc as that time then is seen as diabetes time... It's trying to minimise the efforts and time around diabetes that could be disrupting your childrens lives....

If your children are playing and having fun and its time for a blood test... Don't be adamant and rigid that the blood test has to be done then.... Allow some flexibility.

Speak to your HCP's regarding the higher levels... Do this when children aren't around if possible.... So thst again, its not diverted time and that they don't see you as being anxious. If they see you worried with levels at 16 they can also pick up on this....from your reactions to low's and high's whether its your wording or body language.. They will be picking up on it all.

Cry time is needed for parents....it is a disease that effectively has been a bad gene... But boy, its liveable and your child can still have a great life... And diabetes can make us in to more caring, compassionate human beings... It did for me. Don't beat yourself up over a bad gene.... There's a lot worse diseases that children can have.

I take it that you know how to carb count and how to adjust doses? Or is your daughter on doses that are set by your HCP's?

Many children are being offered pumps. I have a great friend whose child went on to a pump at 8 and it enables her daughter to have more of a discreet diabetes.... Her daughter now 11 doesn't have to get out injections etc.. Just gets out a gadget that looks like a phone to give her bolus for food...my friend (the mum) sits fown in the evenings with the remote control.. Looks at the data and makes any adjustments necessary for the next day. So it reduces the stress on her daughter. We met through this forum, never actually met up but phone, text and email at least once a week, probably a lot more actually. Her daughter and I tend to actually run in tandem with pump problems. If I have a pump failure.. (last week) then odds are on that her daughter will too within a couple of days.. If my levels dip due to summer months.. Then her daughters will be doing the same so we have a chat by some mean and put the world of diabetes to right!!! And a lot more nowadays!!

Its not the end of the world, just the start to a lifestyle of being a bit more aware of health.. Which isn't a bad thing nowadays...

You'll get huge support here and there's a lot of us around!!

It is life changing but not life ending.. Take carexx

 

[Angiejean]

All good advice. Thank you. It is always good to hear from someone with so much experience first hand.

 

[donnellysdogs]

All good advice. Thank you. It is always good to hear from someone with so much experience first hand.

Old!!! -lol..... But survived 30yrs+ and no complications. If I can do it, tbem it gives hope to everyone

 

[Blondie153]

Hi I know I am a bit late to join this one. All parents I feel go through the stages of grief for the loss of your child's life as they knew it. That is normal and healthy. The only advice I have on this is try and do it when you are away from your child. Children take their cues from you and if you make it the end of the world then that is how thy will see it. It is a terrible thing to happen and you will blame yourself for the stupidest things to try and make sense of it, I went through all the list did I not breast feed her long enough, did we move to the country and she was out of the smog! You name it we will punish ourselves for it. But I agree with one if he other posters. If you give your child ownership of it, helping with the carb counting having her choice of foods, pricking her own fingers, injecting herself and picking which trendy bag she gets to carry her stuff around in helps. These little things matter to them. Hope this helps a little. But the most important advise I can give you is to just love her and be there for her when she has the bad days and the only person who can be there is you (or dad)
M