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I know -A day in the life of a parent of a Type1 child.

Discussion in 'Parents' started by Gemmablower, Apr 24, 2015.

  1. Gemmablower

    Gemmablower Type 1 · Well-Known Member

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    A day in the life of a parent of a type 1 child.

    "I know"


    Since the diagnosis of type 1 diabetes in my 2.5 year old beautiful daughter 4 months ago, I wonder where are the support articles telling all the amazing parents the ups and downs of dealing with this disease 24/7 and how well they are all doing.
    I see nothing so I am writing this as "I know" so many can relate and find this as a support knowing they are not alone.

    First of all I want to say how highly underestimated diabetes is to live with even for an adult let alone a toddler. It's not just "have a chocolate bar and you will be alright"

    Don't get me wrong of course I find some comfort that my daughters disease can be controlled and there is medication for it and she is not terminally ill and can still live her normal life. Yes this I am very grateful for.

    We live each day as it comes right now and try not to put high expectations on ourselves. control still has to be good, you see there are consequences if they are not controlled and not just from Low sugars (hypos) but also something I never knew was that there are long term harsh consequences from having high blood sugars (hypers) and these hypers bring pure spouts of guilt when you see it on your glucose monitor.
    "What have I done wrong, was her meal to big, was it the pasta, was it not enough insulin, do I need to change my carb to insulin ratios?????"
    This can cross your mind in a matter of seconds which will then lead to a mathematical process in your mind where you can get lost for a good 20mins or longer if you were to let yourself.
    Truth is we all do our best we can only learn from our mistakes and be better the next day.

    To begin with I would dread waking every morning to the new routine where I would have to wake my baby up and upset her as she was due her first of 4 injections at 8am and sugar test which she found all so unbearable and so did I.
    We have turned that corner now and she hands me her finger sometimes while watching the TV! Something I never thought I would see! never thought I'd be so happy that my daughter is ignoring me!

    The sleepless nights are difficult and something that most people are unaware you have to deal with, checking blood sugars at 10pm and at 3/4am and then finding she has soaked her nappy through to the bed clothes as she has been going to bed high sugars.
    On the flip side you are worried that there is not enough sugar in little ones body and that she will have a hypo that you are oblivious to in the night.
    Least we have the finger pricking now down to a quick in and out now while she stays sleeping most of the time, again another step taken in the right direction.

    Starting school is a big one that weighs heavy on my mind. So after taken a lot of time calculating how much insulin to give for every meal to the carbohydrate and assessing my child for any symptoms of hypos can I really trust some one else to calculate this dose correctly, administer it and to treat and spot my daughter low blood sugars.
    My saving grace is my daughters strength will get me through this more than anything, to see her just get on with it and live her life as she knows as normal is inspirational.


    I want to give all the parents dealing with this a huge hug and want to say "I know"
    I know this is not everything and there is even more to it.
    I know you are coping so well, simply because you have to.
    I know how you think and grieve at night time,
    I know this is normal.
    I know you just want your child to fit in and not feel deprived.
    I know you feel you have been given a crash course in diabetes, child psychology, nutrition, food glycemic index and carb counting.
    I know as a parent you will do anything for your child.
    I know this will get easier.

    Keep strong
     
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    #1 Gemmablower, Apr 24, 2015 at 12:02 AM
    Last edited: Feb 13, 2017
  2. donnellysdogs

    donnellysdogs Type 1 · Master

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    What a heartfelt post to read.
    Parents take on all the responsibiltys and feelings that adult responsible T1's feel and it is absolutely heartbreaking to read of so many postings nowadays from parents especially that their children under 5 years of age sre being diagnosed.

    I help a very dear friend of a child using a pump and realise more how hormones and puberty as teenagers can also throw levels out.

    On the positive for all parents. My dad when I was disgnosed 30+ years ago promised me there would be a cure in my lifetime. Although that hasn't been realised yet there are huge improvements, research and hope that has happened in the last few years mainly. So hold on to that hope.
     
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  3. vicki.milne

    vicki.milne Parent · Member

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    My son was diagnosed on Sunday Gemma so I can totally relate to your post.
    It's certainly made me realise what a lot of unsung heroes and brave little soldiers there are out there living amongst us who the rest of the population are completely unaware of.
     
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  4. Natalie1974

    Natalie1974 Type 1 · Well-Known Member

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    @Gemmablower and @vicki.milne...I can't even begin to imagine how life must be for you right now...a roller coaster of emotions I would think...my heart goes out to you and all other parents in the same position.

    A diabetic nurse told me when I was diagnosed...it may never be easy...but it will get easier!

    Wish you all the best x
     
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  5. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    A wonderful well written and thought out post. I feel the same with my granddaughter, but I don't live with it 247. It is hard and it is manageable, but does that ache ever go away ? Take care RRB x
    ps I know of a lady who has 4 children and 3 are all type 1. one girl and 2 boys, she copes remarkably well, don't know how she does it, but she does.
     
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  6. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    They're tough little cookies <3
     
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  7. Gemmablower

    Gemmablower Type 1 · Well-Known Member

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    I'm sorry to hear vicki, I hope you and your son are ok and he is feeling better. I have found this forum a good place to vent and learn a few things alongside with support from our team. Wish you lots of luck and one big hug from one mother to another. X
     
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  8. vicki.milne

    vicki.milne Parent · Member

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    Thanks Gemma - it's been a very long few days, feels like it's been an age.
    We've come such a long way already but know there'll be many more hurdles waiting for us ahead too.
     
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  9. donnellysdogs

    donnellysdogs Type 1 · Master

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    Welcome Vicki to the club that is great but nobody wants to have to join.

    Like previously said. It does get easier but its a tough rollercoaster to ride on sometimes.

    I wish above all that young children and parents could avoid this but there is better hope now than at any other time previously.

    Do join up to jdrf.org.uk too as they also give invaluable information.
     
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  10. Gemmablower

    Gemmablower Type 1 · Well-Known Member

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    im hopeful to that one day there will be a cure and we seem to be going forward slowly. X
     
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  11. MammaLucy

    MammaLucy Parent · Member

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    What a cord you struck for me. My son was diagnosed in May 2014 and now nearly a year later I am still taking every day at a time.
    What astounds me is how amazingly resilient the children are and how when I break down and cry it is my son who consoles me and not the other way round. If you are fortunate to have a good school near you then they will be amazing and look after your daughter well. My children go to a small rural village primary and they have been incredible with both my sons diabetes (type1) and his and my daughters coeliac disease. I am still trying to find other people in my area with children the same age and with the same conditions so that we Mayer up and help each other but nothing yet ( as with everything I live in hope) . I hope you are able to do that and share the issues /fears/ queries etc with others who as you put it "know" . I am going on a little but basically wanted to say that "I know" and understand exactly where your coming from and am going through the same stuff (day and night) and am sending you a big hug . Lucy x
     
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  12. Miles2002

    Miles2002 Parent · Newbie

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    Hi

    You have pretty much wrote many of the thoughts and feelings iv been through on our diabetes journey. My son was diagnosed t1 the week before his 13th birthday (8 weeks ago), not the expected diagnosis we anticipated and still really not sunk in.

    My son has taken it on the chin in the main but feels he isn't 'normal' anymore and it has taken a chunk of his confidence away, not that he was an over confident child in the first place but was just starting to find his Person !

    As a parent I feel he has been robbed of being able to live his life without being burdened by having to think all the time about everything he does, however, I am truly grateful that he is alive and able to live his life which some people and families haven't been able to experience and for them I send much love.

    I too would like to put my brain on the side and have a rest but who am I to have that privilege, my son, yourselves or your loved ones can't.

    For me the support from family and friends has been phenomenal and the diabetes team have been there, but unless your living it or living with it, all the information at the start, nothing prepares you to really understand it and yet I feel I still don't understand it, some days things seem to be in control and other days the carpet is pulled from under our feet. I'm trying to analyse, understand, predict or identify patterns or, trends to support my son better but nothing stays the same, when you expect the blood to go one way it goes another, nothing is predictable.

    I do feel though that there isn't enough information given at diagnosis (yes get the initial facts to start living with it day to day) but to allow you to understand diabetes, short and long term, emotionally and physically, I could have done with a diary of the thoughts and feelings, doubts and questions that you go through because each day / week is different and sometimes I didn't know what I needed to think about or ask until it was upon us.

    8 weeks in, we are still living it day by day still searching and looking to be able to understand it and have the answers ready ....

    Anyway, we carry on and send lots of praise and admiration to anyone suffering an illness.

    If I get the chance I may write the diary myself

    Love and hugs to all of you living with diabetes and thank heavens for forums like this. Thank you xxxx
     
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  13. redding43

    redding43 Parent · Active Member

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    Hi, just joined the forum after our 2 1/2 yr old daughter was diagnosed on Friday. We are early in the journey but keen to understand whatever I can
     
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  14. Gemmablower

    Gemmablower Type 1 · Well-Known Member

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  15. redding43

    redding43 Parent · Active Member

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    Thanks, I have ordered that.

    It's all early days and a little surreal to us at the moment. She was a little unwell when we took her to hospital but we had no idea it could be diabetes until a routine urine test (doctor thought she had a kidney infection) found high blood sugars.

    Even now we have to keep convincing ourselves she has it. She is on such a small dose insulin before meals (0.5) and we were advised to stop the 24hr insulin we were giving her before bed as she was waking Hypo.
     
  16. Yaz2009

    Yaz2009 Parent · Member

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    Thank you for your kind words we need to hear it . Having that understanding from another parent brings so many emotions. I say this as I shed a tear. Thank you
     
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  17. redding43

    redding43 Parent · Active Member

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    Thanks again. It's such a similar story except for us it's our daughter who is adopted rather than my wife or I.
     
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  18. vicki.milne

    vicki.milne Parent · Member

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    Hi , sorry to hear you've had to join us here too.
    We're just over a week in from diagnosis and it really is such a whirlwind of emotions.
    I've not been able to put a plug on the waterworks when anyone stops and innocently asks how we all are yet!
    The best advice I've had so far is just to take one day at a time, don't compare things with others, or how things were in the past.
    Seek out support, whether it be from the hospital, family and friends or forums like this, it can feel like such a lonely experience.

    Hopefully there'll be a time when all this doesn't feel all-encompassing and life can start being lived again.
     
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  19. Gemmablower

    Gemmablower Type 1 · Well-Known Member

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    It really is...I can really understand how this came out of nowhere for you and relate to how you are feeling, it's good you caught it early without having any idea that it might be in the family history.
    How is your daughter feeling in herself and coping? I have found in the early weeks that rewarding Zara after her injections with stickers of cartoon character she loves helped with distraction, she could choose it while I was injecting. Let her play with her monitor and stick stickers over her insulin ped and pretend to do my insulin and take my glucose so she became familiar with it. I think with little ones the one upside is you can normalise it all a bit quicker. We still have days where Zara protests against a injection but nothing major.
    I'm listening if you ever want to talk or ask anything.
     
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  20. redding43

    redding43 Parent · Active Member

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    We have been really lucky. Our daughter has a fascination with doctors and nurses and loves pretending to take our temperatures at home or giving us pretend injections. That meant when we rushed her to hospital last week and they put a line in to take blood she was interested by what they were doing, didn't cry at all and....quite the contrary....offered her other hand for them to do it to that one as well.

    This has continued with the prick tests and the insulin injections themselves. She seems completely unfazed by it all, she decides (with U.S. Influencing) what finger she wants to use and then where she wants her injections. She remembers the meter readings and recites them back to us 20 minutes later.

    Whether this will continue this way we don't know but for now we are so glad we don't have an upset child to deal with

    As for how she is feeling. We have definitely got our old funny, loving and (fairly often) stubborn little girl back
     
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