For the first time today my little 3 year old begged me to remove her “diabetes”. She asked that her pancreas not be broken – over and over again.
In so many ways she is so much older than her 3 years. We can have conversations about what it means to be high or low. She understands what her blood glucose levels should be and can read them on her monitor. She is starting to test herself and discuss the carbohydrate content of the foods she eats. We also discuss fats, sugar and protein. We talk about exercise and why it is important and also how it will impact her blood glucose levels. Before today my daughter had always soldered on. Very occasionally she would cry at a needle, but almost always she would take her 5 plus needles each day and 2 – 3 hourly blood tests in her stride.
She was a little high this afternoon and I was tired and in a cranky mood too – so maybe that instigated her self analysis. “Why do I have diabetes? Did you have diabetes when to were 3? Why do some people have type 2 diabetes? Why can they get better and I can’t?” She hit me with question after question. Most I couldn’t answer with anything better than, I just don’t know. When she asked me if one day her pancreas would get better it just broke my heart. In all honestly, I just don’t have enough faith in a cure. Not enough money is spent on type 1 diabetes. Not enough people understand what it means to have type 1 diabetes. Kids and adults with type 1 have an invisible disease to a large degree. Most of the time no-one knows they have type 1 diabetes.
My daily fears are that my daughter won’t wake when sleeping due to a heart failure from a low, the constant monitoring of food, blood testing and needles and the common questions about why she has diabetes (“Did you feed her lots of lollies when she was a baby?” or my favourite “Don’t you wish you breast fed her?”). As time goes on I am getting better with the questions. At least people are interested enough to ask and this gives me a chance to explain type 1 to one more person – and maybe that one person will share with someone else.
If I believed in God I would pray for a cure, but all I can do is ask those who have a spare few dollars to donate to the Juvenile Diabetes Research Foundation. If not today, next week, next month, next year or even 10 years from now. I would love for there to be a cure one day. In the meantime, small technological advances make life easier for those with type 1. And technology is something I do offer my daughter for hope – that and my 100% support. There are promising medical devices overseas that hopefully will reach Australia and be funded by our government.
We take it one day at a time – but today was a tough day emotionally for all of us.
Jackie Goldston is the editor of a regional Queensland kids magazine and business strategy consultant, former marketing manager for big pharma and fantastic charities. You can read her blog http://mumbuzz.blogspot.com.au or check out www.kidsonthecoast.com.au
Comments
41 Comments so far
Hello! ckkbeee interesting ckkbeee site! I’m really like it! Very, very ckkbeee good!
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The article “Mummy I dont want to be broken” (by Jackie Goldston) brought tears to my eyes. I am a supporter of JDRF and that’s how I read about the article. My 12 year old nephew has Type 1 diabetes; he was diagnosed nearly 2 years ago. He is the bravest kid I know. Great to see Mamamia spreading the word about Type 1 Diabetes, we need to get the message out there that Type 1 is a serious condition that cannot be caused by eating too many lollies! Thanks Jackie and all the best to you and your daughter.
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Thanks Tineke. I hope your nephew is going well.
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Having three beautiful children myself and seeing just part of what Jackie has to do and go through just to make sure her gorgeous girl is healthy is truly amazing. I think Jackie and any other person or parent dealing with diabetes should be admired for all of the challenges they face in their daily life that we (diabetes free people) can’t properly appreciate. I am truly thankful for my children’s health and for the extraordinary role that Jackie plays as a mother and caregiver to her beautiful daughter.
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On the 19 April 2007, I carried my 3 year old into the hospital after 9 days of endless vomiting and a total of 6.1kg weight loss. I was just on 8 months pregnant and in & out of labour. I wanted answers as so many doctors had told me it was a virus, cold, etc…. As I laid my daughter on the treatment table and our doctor took one look at her and said ‘test her BG now’ I still had no idea watch was coming my way. With no family history either side of type 1 or 2 diabetes I just stood there looking at the doctor as nothing could come out of my mouth. My husband worked away and I was on my own. It wasn’t until she stopped responsing that I realised she was trying to leave me. I yelled at her that I wasn’t giving up and I wasn’t letting her go. Finally after the longest 24hours of my life (in / out of labour too) she opened her eyes and looked at me. She said I feel better now mum can we please go home. From that day on we have good and bad days. Hardest part is the questions from her or remarks ‘when I big like you mummy, I won’t have this diabetes and I will be all better’. She is my strength as I still cry and ask why us… She knows so much and still tells the teachers at kindy they are doing it wrong let me show you
I made the biggest promise to her that she had so many changes to come so I would do the changes as well. I hope someday they can make life easier for this special little people too. Somedays are hard and I feel so alone but then my little smiles at me and it all changes. Unfortunately due to such a later / misdiagnosis we have a few other issues but everyday I thank the moon and the sun she wakes up to see me and her sister too.
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I am sorry you had to go through such a challenging diagnosis Bernadette. You sounds like your are coping well now and have such a wonderful bond with both children.
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i have the same story for 13 years ago … curious how it seems nothing much has changed.
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Had to share this on my wall – it made me cry and I agree people need educating about Type 1 … God I hate diabetes it really is the most fked thing! A constant battle that has no end in sight. Cant imagine having a lil bub diagnosed with it – Jeremy was just 10 when we found out he had diabetes and that was bad enough but at least he was willing and able to do his blood testing and injections himself AND could tell me if he wasn’t feeling right. My heart goes out to everyone with diabetes and their parents – most of who would gladly take the burden onto their own shoulders if only they could. Stay strong xxx
I would be very interested in a fb page for D parents in Oz x
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I’d join a fb page for oz parents if it was set up. Any group would be great.
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There are quite a few that have been established. Try a few different searches on Facebook as there are state based and national groups for parents.
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Vicki, there is a Facebook group called Parents of Aussie Kids with Type 1 Diabetes Support Network – it is a members only group and posts, comments and anything else can only be viewed by members. We have almost 200 member families right across Australia and we’d love to have you join us! I started the group almost 2 years ago, a few months after my daughter’s diagnosis. The address is:
http://www.facebook.com/groups/pakwt1d/
If you would like to join up you need to ensure your message settings on FB allow messages from “anyone” so that the Admins can message you after you have requested membership.
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there’s a forum called munted pancreas for parents of kids with t1
if you google it, it should come up
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Hi guys, it breaks my heart hearing your stories but from experience I think parents sometimes feel guilty and emotional more than the patient. I was diagnosed as a t1 at age 10 and don’t get me wrong I have some days that it gets the better of me and ask why me? However these days are few and far between. I have now had diabetes for over 20 years. I am currently pregnant with my 2nd child and living a full life. I didn’t feel as if I missed out on a childhood, I lived overseas for 2 years without any complications and was determined to do everything everyone else could do. 4 years ago I lost 50% of my sight in my left eye and it was a huge reality check. I became a bit of a recluse around my friends who worried about boys, etc, their issues became quite trivial to me. However every day I’m grateful for a disease I can control, a disease that gives me the ability to live a full and normal life and most importantly a disease that I don’t have to stamp on my forehead and tell the entire world about! People are extremely uneducated to what type 1 diabetes means but honestly I don’t give these people the time of day. Keep your chin up and remember that being a diabetic can also mean and long and fulfilling life.
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13 years ago my 18 month old baby was one of the very FEW to be diagnosed with Type1 diabetes.
Today i am reading the same story over and over again…. yet now the incidence of diagnosis is most overwhelming.
When is this illness going to be recognised as a force to be dealt with.!!
We need to know the cause and we need a CURE.
My heart goes out to all of you …. the pain is unbearable to see childhood pass by our children.
It is easy to say ..” you will get through”… but there is hardship along every step of the way.
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As a 16 year old diabetic I still think these questions sometimes, I was diagnosed at nine and my parents were so overwhelmed because they tried to take everything in at once as I’m sure most parents would. As a child I only took in the small but important stuff so my parents can come to me and ask still.
This story needs to be shared as so many people have no idea about the stress this puts on families, friends and is diabetics.
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As a diabetic for 25 yrs, coming up 26 in july, i was 4 when digonsed with type 1 and i can so relate to the stupid questions i have been asked. I have 3 healthy children now. Ive got bac to studying this year as my youngest turned 3 and i needed to get out back into the adult world. And one of my teachers was handing out lollies as it was our last class before easter, and one lady turns to me and says, oh i better not eat those, ill get sugar diabetes like Amy. My blood boiled…..
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Our life changed in an instant almost a year ago when our beautiful daughter, who was 4 at the time, was diagnosed with Type 1. The journey so far has been….. long. And it’s only been 12 months. I feel at my weakest when I remember that, in 5 years time, we will still be dealing with this cruel beast, and that it will continually throw us challenges and make our baby girl mature beyond her years. We try so hard to make sure it doesn’t take her childhood away from her. We work around the clock to take the bulk of the management off her tiny little shoulders so that she can just do what most other 5 year olds do. Insulin injections, carb-counting, meal control, blood sugar monitoring, high’s, low’s, side-effects…. fear…. it’s the most abnormal life for a child.
There is so much to write – it’s a condition that occupies your mind & emotions every hour of every day. I cry a lot. Usually when nobody else is around. We have 2 other kids as well, so when I’m not completely consumed by T1, I’m frantically trying to cope with all the other things being a mother of 3 throws at you every hour of every day.
All I can do is beg for the support of people around us. If you don’t know anything about Type 1 Diabetes, or if you don’t understand the difference between Type 1 and Type 2, just don’t say anything. I try to ignore the insensitive comments, the ignorance, the judgement, but it’s hard to do when you’re emotionally tired & vulnerable all the time. To my friends who send me emails about Type 2 research, saying “she can control it with food!”, please don’t. To the Mother’s Group who sat around and chatted amongst themselves about how it “obviously happened” because I couldn’t breastfeed, please don’t. To the anti-vaccination crusaders who all think Type 1 is connected with immunisation, please don’t. None of this helps. Just ask us how we’re doing occasionally. That really helps.
Be strong, Jackie. Your daughter is amazing in a way only we, the parents of Type 1 kids, understand. xo
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I was diagnosed with type 1 as a young adult, so I am fortunate enough to know what life was like without D.
It is so frustrating how ignorant people are about our disease. It can be difficult to ignore the hurtful comments and explain, over and over, that it wasn’t due to what I ate as a child, or that a high level doesn’t mean I’m not looking after myself, it is just an unpredictable disease. Your daughter will ask all of those questions, many, many times in her life. I too, don’t believe there will be a cure in my lifetime. We can only keep soldiering on. The clinic that I attend, has so many activities available for kids, and there are also camps for kids to attend to learn how to manage their D without Mum or Dad to help, which I think is a fabulous way to teach them how to take control themselves. The hardest part, in my opinion, is the transition into adulthood. The support just seems to fall away. So much emphasis is placed on the child at a young age, but when they are thinking about leaving home, or travelling , or doing anything that young adults do, that they can easily be forgotten about.
The media have a lot to answer for in relation to the confusion between type 1 and 2, and I don’t think I’ve ever seen a report about gestational D. If the media learnt to differentiate between the two types rather than just saying diabetes, then perhaps the ignorance could wither away.
Because your daughter is asking those questions now, it shows that she will be a strong person, and will be managing it herself before you know it. I wish her, and you all the best.
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It bought tears to my eyes to read all the comments and article. My son who was diagnosed when he was 16 months old and who is almost 8 now still asks questions which breaks my heart. I found putting him onto the insulin pump made life a alot easier and less stressful on the whole family. My heart goes out to all parents with a diabetic child. We deserve a big pat on the back as it’s not an easy job but we do it out of love.
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I’ve had those questions, and 6 yrs on I still get then, when bloods are high or a really bad low happens and were both in tears from norrowly escaping an ambulance trip. I still don’t know the answer to give my 8 yr. your right type 1 diabetes is unrecognised, and the money doesn’t get donated , people don’t see the parents waking multiple time a night to test or the ocnstant strain of hoping that your child will wake up, or will come home from school, or my fav sports carnival wont end up as a hospital day. Thanks for sharing.
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Thanks for your feedback Rhianna. Everything we do to help raise awareness will hopefully make the lives of our children and those with type 1 a little easier!
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As a teacher I have come to know a bit about Type 1 Diabetes and how we can support students with the disease. One particular student of mine became a JDRF ambassador around the age of 9 and she is mentoring a younger student this year now that she is in year 10. She’s become very knowledgeable and I saw her grow from a vulnerable 12 year old who wasn’t sure how to manage, and then dug her heels in and refused at times to manage it, to a nearly 16 year old who has taken on many leadership roles within the school and is very successful in her studies, as well as managing her disease positively. She takes it all in her stride. Talking to her mum about how she would go on year 7 camp 4 years ago was such an insight into the worry parents go through and the immense responsibility of teachers etc to care for a child with this condition. I’m very grateful to have taught a number of students with T1 and learn more about it.
The loss of childhood *is* awful, however many kids suffer through all sorts of diseases, set backs and traumas, and I believe (as I was one of them!) that with excellent parental support and good education, they tend to become determined, balanced and mature young adults as a result of the hardship… it’s just getting them through safely that’s hard work for all involved, especially the kid.
Sending lots of strength and support to you and your brave little girl. What a trooper! xx
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Hi Jackie, my little girl is also 3 & was diagnosed at 1 and a half. Just this week she has been saying ” I hate my diabetes & I want a cure” (she actually calls it a skewer), still just a baby:( it breaks my heart everyday what she goes though & I wish for the cure to come fast.
It has changed our lives in so many ways, yes it makes us stronger & appreciate things more but it also makes me sick with worry everyday & night. Nights are the worst because I wonder what would happen if I slept through an alarm one night because of how tired I am from the nightly checking & treating hypos. I still look at her sleeping and I cry at how much her world has changed & i wonder what diabetes is doing to her tiny body. She has never known a life without it, all she will ever know is insulin, needles, hypos, highs, drs appointments every 3 months, blood checks every 2-3 hrs everyday & night, carb counting, weighing & measuring all food & drinks, being attached to an insulin pump 24/7, and being robbed of the freedom that should come with being a child. She is my amazing, brave soldier that really only cries about it when we have to change her pump set every 3 days. I have shed way more tears than her!
I do thank god for the advances in technology & the hope that they are searching for the cure. We always donate to Jdrf & raise funds for walk for a cure. The more money the better, the sooner the better!
One day at a time, my vow is to keep her healthy & well till we have the cure.
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Oh my heart breaks for any parent going through the pain of diabetes I myself have type 1 diabetes but was I’ll for over 10 years before I was diagnosed and it wasent untily second pregnancy that I developed the disease but after the birth of my first son who was born with severe low blood sugar I believe they might have missed something.
Your beautiful daughter isn’t broken tell her she is just more special than others and it’s ok to cry at her needles at times I cry and I am 31 so I can only imagine what it’s like for a little person
Hopefully by showing people that not all diabetics have “caused” there own disease people will gain a better understanding of the disease itself.
Jackie you are so brave for sharing your story with the world
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Thanks Jamee I appreciate your support.
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Jackie, I cry every time I hear about another parent going through these difficult questions with their little ones. My daughter was 5 when she was diagnosed and asked me many, many times when it was going to go away. It is truly heartbreaking. All we can do is keep fighting for our darling children, keep working hard to raise funds, keep educating everyone that we can, and keep hoping and praying for that cure.
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Thanks Cath.
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I had gestational diabetes during my pregnancy and relied on insulin to keep my sugars at a safe level for myself and my baby, so I have perhaps a *tiny* idea of what your daughter goes through with testing and injections. But I can hardly comprehend her having to go through all this at such a young age, and her confusion at the unjustness of the roll of the dice that left her with this condition is heartbreaking.
Having had some involvement with JDRF in the past, I understand that the advances being made in the field are enormous, and many researchers are confident that there will be a cure in your daughter’s lifetime.
Your daughter has access to the best treatments in the world, she has a caring mum who is involved and supportive, she has been diagnosed early, and she is incorporating her treatment into her everyday life, so she has a really good chance of managing her condition successfully. She is lucky to have you.
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Thanks Trixie.
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Hoping for a cure very soon for all type 1 diabetics. Sending everyone lots of love and strength xxx
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Hi Jackie, I promise you it will get better. My daughter was diagnosed a week before she turned 11. Prior to that we had endured Doctors telling me she was ‘hormonal’ and ‘turning into a teenager’… I finally put my foot down and demanded a blood test, turns out she had Type 1 diabetes.
Georgia is now 16 and when we talk about it now, she tells me what she remembers most about that day is how she woke up in hospital during the night and saw me sitting there with a stack of medical books, reading everything I could.
That day, she had never had a blood test, or done a wee in a jar so I knew it was going to be an uphill battle coupled with the fact that she is a headstrong girl. But she surprised everyone and took it all in her stride – mostly. I cried when I gave her the first insulin injection and it was certainly harder on me than her, after 3 months she told me she would rather inject herself and we have never looked back.
As she has gotten older and the old ‘teenage body image’ had reared its ugly head, this is where it got difficult. Type 1 diabetics develop a strange relationship with food – getting them to eat at 1am in the morning when they are low and not hungry will do that. The hospital clinic has been a godsend to me during the night on more than 1 occasion.
The hardest times have been when members of the public have made comments to me – once when Georgia was at a school function, went low and had to drink some coke, a personal trainer made some very inappropriate comments, reducing me to tears. This doesn’t happen anymore. I counteract this by being as knowledgeable as possible, I know more than GPs about diabetes and I run teacher training at schools – Georgia’s school has 6 type 1 diabetics on campus so I make sure the teachers are up to date with treatment and act as their advocate if needed.
As Georgia has gotten older it has become easier, the Hospital starts to move them gently into the adolescent clinic from the age of around 14 and get them to take on more responsibility for their day to day care. I keep an eye on her levels but leave her to do what she has to do and watch from the sidelines, only getting involved if she is sick or needs assistance.
I wont lie to you, it still breaks my heart, the complications are massive, the night lows will always be at the back of my mind and there is the knowledge that she will live 10 less years than someone without Type 1. But I do believe that they will find a cure, already they are close to closing the loop with an insulin pump and since her diagnosis insulin pumps have improved dramatically… insulin nasal spray is already available in Germany…JDRF do a wonderful job and work really hard for a cure
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Thanks so much Gaby. It sounds like you have been strong and through so much.
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I am in tears in front of the computer, trying to cry quietly so I don’t wake up my parents. I hate having type 1 diabetes, it is a bitch and there is nothing I want more than a cure. Your daughter shouldn’t have to endure what I do, she needs a childhood, it’s just not fair!
your baby girl isn’t broken, us type 1 diabetics are bred tough.
She’s strong, gorgeous, and ten times braver than other ‘normal’ 3 year olds. Enduring 5-6 needles a day and 2 hourly bgl tests as a three year old is worthy of a medal. Hell, 365 medals, one for each day of the year!
I just want to give your daughter and you a huge hug. It gets easier, she’ll be so capable and do everything she wants to do. I lived overseas for a year and backpacked with it, she can do everything and the technology now is so much better! You’ll be so incredibly proud of her, as I know you already are! And having type 1 diabetes is bloody scary, as is parenting a child with it, but you get through it cos you she to and it makes you both stronger. The constant monitoring, the worry, the worry SHE’LL feel as she gets older is horrible, it makes you a stronger and more mature person but by god it’s hard. She’s so lucky she has you, I was diagnosed at 17 so my parents kind of took a back seat and I launched myself into it. I would give anything for my dad to help me with carb counting or my mum be able to inject me if I can’t, but whatever, that’s life.
MamaMia staff, I’m actually in the middle of writing an article about living day-to-day with type 1 diabetes and JDRF, which I was going to submit to you guys, but I don’t think I”ll submit it because this one hits home with a lot more people I think
I’m a JDRF advocate, and I WISH more attention was given to type 1. I really resent the constant attention given to type 2 diabetes awareness, share it around please. type 2s deserve attention, rightly so, but so do we godammit! The attention and funding is so unequal. Don’t ignore us please! Up until about a decade ago we had to pay for our needles, but drug addicts didn’t! GAH, priorities please.
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Hi GeorgiePie, its the lack of childhood that gets to me most, she lost her childhood at the age of 11 and grew up overnight..You are very brave and I hope I have the courage to let me daughter go overseas and experience life without me there to count her carbs …. ;-0
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Gaby – it is the letting go that will be frightening for me too.
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Georgiepie it is great to hear from you and I very much appreciate your feedback. I am really appreciative of Mamiamia’s support in spreading the importance for a cure and better understanding of type 1.
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Georgiepie, you should still submit the article if you’re almost finished.
I, for one, would be interested to read about the day to day of diabetes.
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Jackie, thanks so much for your piece. I posted it to my wall to try and educate my friends, as my 4 year old daughter was diagnosed only 11 weeks ago. I only found this today, as I still feel like I’m wading through mud! As you said – if I can stop one more ‘it’s just like a nut allergy, really’ or ‘did you feed her heaps of sugar?’ comment, then that’s a victory. It will stop me disowning all my friends, at the very least.
And GeorgiePie, thanks SO much for your words … part of the grieving I’ve done in the last few weeks has been for my baby’s adolescence and future freedom, as well as her childhood. You give me hope that she’ll still be able to do it all – the travel and freedom that any young adult should be able to experience. I also had images of her in her wedding dress, trying to conceal a pump, and as an embarrassed teenaged girl on a beach, trying to hide the bruises from her injections. These are the things that I haven’t been able to shake, and your obvious strength and ‘can do’ attitude are helping me to see that my daughter will be the same. She’s already so strong – started injecting herself voluntarily, complaining only occasionally when I’ve interrupted something fun, and being really understanding when I tell her she can only eat ‘free’ foods cos her BGL’s too high until her next insulin dose.
That said, her levels keep going out of control, and she loses it when she’s high, and I’ve already had some really terrifying lows to get her through too. And I’ve studied all I can get my hands on – I’m determined to do the best job I can for her. I’m hoping to get her into a happy adulthood without her feeling the full burden until she absolutely has to. My god, though, it’s exhausting!
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Oh wow, booli,you sound incredible! how dedicated you are! your daughter is a very lucky girl.
the freedom is not like it would be, but thats not a bad thing – it’s really only the massive uni binge drinking culture I’m not a part of (since I tried that in London and nearly died…), and who wants to be part of that anyway? save your organs! 
and I’m going to admit, it takes a toll on your confidence, especially those bruises, but your friends accept you for who you are. my mates love my insulin pump, we call him ‘norbit’. it’s all about support I think. No-one I know in real life has it, but I have so many amazing internet type 1 friends 
you’re welcome – you know what, I think the parents worry more than the kids
don’t stress about her levels – she’s only been diagnosed for 11 weeks, her levels will be everywhere anyway! it takes a while for them to settle down while you work out doses, Insulin to carb ratios etc. are you carb counting? LOT more flexibility. and really consider going not he pump- it has changed my life, so much more flexible, I feel less like a diabetic and more like me
I was going from 16 in the morning to 3 by lunchtime after diagnosis, it will settle down I promise!
munted pancreas is a great forum for parents of t1 kids – google it. reality check.org.au is one for t1s themselves, but great for help if you want to scroll through any kind of t1 related question!
You’re AMAZING, keep up the awesome job! If you have questions/need babysitting if you are in Melbs (shameless plug, I love looking after little t1s) shoot me a private message
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Sending my strength to you and your little girl today and hoping that a cure is closer than we all think xx
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Thanks Nat.
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