Tuesday, 19 April 2011

20 years - from a mum's perspective

I am so, so honoured that my mum took the time to write this. Please, please share this everywhere you can - I think she gets the message across so clearly about why we need a cure so badly (I know I'm biased as she's my mum, but I think it's great).

--


19/04/1991

Twenty years ago today my life changed forever, taking me on a journey which I never dreamt I would make, did not want to make and hated every minute of it.

Siobhan had been unwell on and off, the usual viruses that 2 year olds have nothing serious yet there was a nagging doubt that something was not right. She started to have an unquestionable thirst, she was wetting herself having previously been potty trained, and was generally miserable. 

We had been to the GP at various times and nothing conclusive was found, and then we changed GP.  I made an appointment to see him. I had read my friend’s ‘Readers Digest Book of Family Medicine’ (no internet at home in those days!) and between us we agreed that diabetes was a possibility. Anyway, ready with my list of symptoms I took Siobhan and her sister round to our GP for our appointment, our first meeting which was to be life changing for my family and a learning experience for my GP. He listened patiently whilst I described Siobhan’s symptoms and then asked if she would be able to produce a urine sample which she dutifully did. After testing, he calmly said that I should go home and pack my bags ready for hospital admission as she had diabetes.

Incidentally that would be the last time she would produce a urine sample for approximately 15 years, as from that time on she flatly refused to cooperate with that request as part of her way of stamping her feet against this terrible injustice.

So I left the surgery, walked home in a haze to ring my family to let them know what had happened.  In those days there were no mobile phones, and I felt as though I was taking part in a film, this was not happening to me and it hurt me to look at my beautiful daughter knowing that something had gone dreadfully wrong. She was broken and I could not mend it for her, what kind of mother was I?Should I have breast fed her for longer? Did she have too much sugar in her diet? Why had this happened, she did not deserve it?

The following week or so is very much a blur; I had Siobhan’s sister to look after so we had a routine of Dad staying at night with Siobhan at the hospital whilst I tried to maintain a routine with her sister. We had to learn how to inject her twice a day and how to check blood sugars using her tiny toes to pinch and squeeze. 

The consultant took us into a room one afternoon to tell us officially that she had type 1 diabetes and as I listened I knew he was expecting me to cry but I couldn’t.  I thought up until then that it was a big mistake and she would get better but now it was official. All I could sayto break the awkward silence was that she had a birthday party planned in 2 weeks. I think that was my way of saying this was not convenient, and the response was that I could use cream cheese instead of icing on the cake.A nurse gave me a leaflet on the British Diabetic Association and that was that.

We were taught how to count portions of carbohydrate and the dietician worked out how many she could have at each meal then snacks in between .They kept Siobhan in for a few days whilst we got used to injecting her and they also induced a hypo so that we knew what to look out for, quite barbaric looking back but we just accepted it as the right thing to do at the time. Our family came to visit bring lots of diabetic products which we quickly learnt when we were at home were expensive, caused diarrhoea and did not particularly taste nice.

When word got around people tried to say the right thing but inevitable said the wrong thing in my eyes. I was shocked and angry and could not see anything positive in this experience.  The fact that choice had been taken away from my daughter made me sad and angry; she could not have a HGV licence, or join the fire brigade. How would she travel, get a job or enjoy life with this terrible illness?

 People said things such as:

It’s a good job you are a nurse”………not, I did not do my training to inject my daughter twice a day, it was not natural

I could not inject my child”…………….yes you could, otherwise she will die, you do not have a choice

God chose you to have a diabetic child because he knew you could cope”……………………….well I’m not coping so thanks for the complement but I want my daughter back without the diabetes

Be grateful you are not in Africa, they do not have insulin there”……………………true but at this moment in time I only care about my daughter so I have no interest in health care systems around the world.

So that was the start of the journey. Our GP saved Siobhan’s life, there were no other diabetic children in the practice and this was the first time he had made the diagnosis in his career so I’m eternally grateful that he listened to me and acted on my instincts. I still thank him with a card on special occasions such as her 21st birthday and I think it is important to remind the medical profession of the impact of their care.

Today, celebrating her 2oth year of living with diabetes I can reflect on the experience more positively. My daughter has got on with her life despite having diabetes;she has travelled around Europe and worked in America and Paris, experiencing a ‘normal ‘life which I never thought would be possible. That wicked disease has moulded her into a caring and sensitive woman who just gets on with it. She has had relationships and the usual ups and downs of life itself and rarely complains. Her sister has been an integral part of this, where I have been protective and scared; she has often reminded me that she will be fine. They have a good relationship with a lot of love and laughter, and I was lucky that there were no repercussions as I inevitably had to give more attention at times to Siobhan and her condition, but her sister keeps her in check often ribbing about her ‘dysfunctional pancreas’ .

My message to all you parents out there is simple. It will get easier, they will survive and equally important, you will survive.

24 comments:

Tired and worn out but happy x said...

Hi Shiv's mum, what a lovely, poignant, sad but uplifting post. Thank you for sharing. Shiv said we would cry and she's right.
I know Shiv and have met her a few times, she is a credit to you and her sister and to herself. She is lovely and I hope my daughter is as kind, considerate, passionate, giving and gentle as Shiv is. I think I'm meeting you in just over a weeks time, it will be a pleasure. x

Anonymous said...

What a lovley post, tissues out here too!! Shiv is a real credit to you and an inspiration to all our children. Can't wait to meet you and Shiv again next week.

Emma and Helen CWS Family

Anonymous said...

I meant CWD Family......but you knew what I meant!!

Sue Griffiths said...

Hi there, I have been diagnosed only 4months and I am Type 1, in my 60's, I retired and was looking forward to doing all sorts - then this ! I can cope I am an adult, how I would have managed as a child or a parent i don't know. you have done a fantastic job it seems, as I've only known shiv for a short while on the website, but she seems like a wonderful girl, caring and very bright and helpful, you have done yourself proud. I take my hat off to you!!

pancreasonmybelt said...

Again shiv, you are an inspiration. And your mum, as all d mums are, is an absolute heroine. A very poignant post that brought me to tears.

Looking forward to seeing you as soon as we can catch up again

love you lots like jelly tots

Sam xxx

Anonymous said...

Hi Shiv's Mum, you have raised a lovely girl who a real credit to you. What a lovely idea to thank the GP who diagnosed. Best Wishes, Julia Rxx

FeltFinland said...

A wonderful post - Thank you both!
Amanda

D_G said...

What a lovely post, defiantly a tear jerker but interesting to read from a mothers point of view, thanks for sharing and you should be very proud xx

Kei said...

Thank you so much for this post Shiv's Mum! Your fabulous daughter gives me so much hope for my two small children who are type 1, and their little sister who has to put up with a lot in her tiny life. You and Shiv are an inspiration to us all. Thank you for sharing.

nicky said...

Wow Shiv was right, we did need the tissues, She is a lovely girl and such a credit to you and herself and the family, I hope my daughter is as well rounded and capable of living life to the full as Shiv does, she is an inspiration Nicky xxxxx

Mumma Woodge said...

Great blog. Can totally relate to all those feelings having 2 diagnosed within 3 months of eachother. I hope when they grow up they have the admirable positive attitude that Shiv has towards their T1 and manage it as well. Thank you for sharing your story x

Big Swifty said...

Having a 4 and 3/4 year old, diagnosed T1D at 2, we tend to live in the moment, to current needs and demands. Anyone with a young child will understand!
But every now and then we look into the future and wonder what it might hold for our boy. And maybe that's why we like Shiv so much, a glimpse of the possibilities?

Karen G said...

This post must have been so hard to write - but thank you so so much for sharing this. I was diagnosed over 31 years ago, and to this day my mother doesn't talk about it - except to once tell me that she feels guilty that she made me go to school that day. Reading your words help me understand a little more of what my parents were feeling.

Anonymous said...

Very inspiring. A credit to you as a Mum and what sounds like a wonderful pair of daughters. Best of luck for the future :)

Debbie Young said...

Bless you both, what a team you are. My daughter was diagnosed just before her 4th birthday and now, with her eighth birthday looming, she has had it for more than half her life. She doesn't remember life before diabetes. I do, and oh, how I wish we could turn the clock back and somehow undo that awful day of diagnosis, made by a very lovely GP who phoned the hospital that evening, where we lay shell-shocked, getting a crash course in diabetes management, to send us her love. You have inspired me to thank her on key anniversaries - I've always felt guilty that at the time I was in no fit state to thank her for saving my daughter's life. And yes, life goes on - I'm hoping that when we reach my daughter's 20th anniversary of diagnosis, we can be as philosophical as you - and who knows, by that time, if we all keep campaigning hard enough, there may even be a cure.

Michelle said...

What a lovely story but very sad at the same time. I can relate to everything you have written. My son was diagnosed at age 3 and has had it now for 12 years. I'll never forget the day he was diagnosed, I was supposed to be going out with friends that evening but my son had been unwell for a week or so but we didn't know what. He kept lying down on the floor to sleep, drinking all the time and going to the toilet a lot. I suspected diabetes when one of the teachers at nursery informed me in the space of 3 hours he'd been to the toilet 5 times and just wanted to sleep all the time. I rang the GP as soon as I got him back from nursery as I wanted to find out what was wrong with him and make sure he was going to be ok before I went out that evening. Well to say my life was turned upside down that afternoon was an understatement. The GP checked his urine and I remember him saying "That can't be right, I'll test it again as these are old testing strips." So he opens and new packet and the same reading again so it was straight up the hosptial. When on admission to hospital his blood sugar level was 33, and apparently that's low for someone who's just been diagnosed, so we were told by the doctor. So we were thrown in the deep end, neither us knew the first thing about diabetes and there we were being taught how to put needles into my son. He was in hospital a week then we were sent packing with a box of diabetes paraphernalia and left to our own devices. 12 years on it has been very tough at times, with a couple of hospital admissions because of severe hypo's and lots of night times of having to get up and make my son eat even though he's tired and doesn't want to. He's 15 now and manages it himself well most of the time, but as a parent I will never ever stop worrying about him and wonder what the future will hold.

Love to you allx

Anonymous said...

Oh dear - tearful start to the day. My daughter was diagnosed aged 3 and is 16 now, this blog took me back to diagnosis day! What a horrible and frightening time it was, and how much better things are now. Thanks - your blog makes me realise how well we are all doing!

Anonymous said...

Wonderful post. Thank you for sharing. I gasped when reading they induced a hypo so you could treat it!! Big hugs to you and your family. My now 23 yr old son was dx'd at 15 months of age.

Love,
Ellen
(@curet1diabetes on twitter)

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Anonymous said...
This comment has been removed by a blog administrator.
Siobhan's Superior Sister said...

I was hoping to get more of a mention but that'll do ;)

JL said...

Hello Siobhan's mum.

Goodness me - my daughter was diagnosed only a year ago and I have written an almost identical story of events - even down to the imminent birthday party and panic about how to feed a new diabetic at their own birthday bash.

Siobhan has met my daughter and has inspired her, and that takes some doing.

Best wishes to you and your amazing family

Darcy's mum

LouiseB said...

Thanks for writing this - as a mum of a boy dx last year at age 4 and a half, your words echo what we went through at my sons diagnosis. For my GP too it was the first case she had diagnosed and also happens to be a mim to a little girl in my sons class at school. I worry all the time about the future as well as day to day blood sugars but hope that an insulin pump will help ease the management. As you say other people always seem to say the wrong going and no-nod really understands the worry and grief of having your child burdened with this horrible thing.

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