Ok ... Jasmin thought it would be a good idea for you all to see two sides of her story, one from the brave strong dependable one who seems to be always in control and takes things in her stride .... and the other side from her Mum !
The best place to begin is from before her diagnosis. I was made redundant on March 7th 2012, I worked long hours for a company in Spain and in hindsight spent far too much time and energy in the job and neglected the needs of my girls, before I continue let me tell you from someone who knows . NO JOB IS WORTH IT !
I had noticed Jaz losing weight over the past month of so, with terrible mood swings and just put it down to her hormones and teenage years, but it really wasn't until I spent time with her after I lost my job that I started to worry. I sat playing with her hair one night and realised how thin and limp it was, she used to have really thick beautiful red hair now it was lifeless and falling out when it was brushed. Another sign was if I fancied a drink at a weekend I'd get the bacardi down from the cupboard and the brand new 2 litre of pepsi that I had bought the week before had been drunk as well as every other soft drink in the house. Where I was not so tired I was often restless at night and would wake up at the slightest sound and heard her going to the loo in the night. Previously she used to suffer from nosebleeds, bad heavy clotting bleeds, that used to make her feel faint and queasy, Looking back over the past two years she used to have "funny turns" where she would be dizzy, sweaty and feel sick but it would pass. On the odd occasion Mick and me would say have a bit of chocolate or make her a sweet cup of tea and she would be ok . Again we didn't pick up on anything, we live in Spain, the heat, she was young running around, late nights, stress at school, we moved around a lot and was never settled anywhere which would be unsettling, all these "excuses" as to why she was feeling rough.
On Sunday March 18th 2012 we had arranged to go out for the afternoon to the races it was the Mijas Cup, we had not been out for a long time as a family the girls were really looking forward to it. Jaz woke up about 10am and came into the kitchen she seemed fine chatting away, all of a sudden she went pale, her lips went blue and she started shaking and getting clammy, she was hot but her skin felt wet and cold. I had also noticed over the past few months her pupils were massive as if she was on drugs, I had also gone down the anorexia route as she was skinny as a rake ! ... Her pupils were like saucers and she felt as though she was going to pass out I tried to get her up off the chair and she looked like she was going to collapse so I opened the windows and got her some air and the "have a bit of sugar, maybe you went to bed hungry" sentence came out again ! ... Mick got a chunk of chocolate and within 10 mins her colour came to her cheeks and she was fine, she had breakfast and the day went on as normal. It was then that I knew something was seriously wrong. I pretended all was ok and that it was because she was tired, she hadn't had a period for months and I said it may have something to do with that. All day I was staring at her, my beautiful baby girl, my first child who I prayed for ( the doctors had told me I couldn't have kids so to have her was a miracle) now I'm staring at the child who I fall in love with over and over again each day who is ill, deep down before anyone even told me I knew was ill. But I cant tell her, I cant tell Mick I don't want to admit it because if I say it out loud it becomes real.
The next day I researched the internet trailing through pages and pages of websites, I drove myself mad to the point of going on a "ask the doctor" website and asking their advice. Googling " teenager weight loss dilated pupils weak tired thirsty mood swings" Search engine results, Diabetes, Crones Disease, Diabetes, Cancer, Anorexia, Diabetes ... The answer was there always but I was trying to avoid it, I didn't want it to be something that needed to be treated I wanted it to be something they could cure and take away.
I finally plucked up the courage to get an appointment at the hospital for some tests on Thursday 22nd March. The Paediatrician gave her a full MOT and gave her a clean bill of health, teeth perfect, weight a little under average height perfect, development perfect, any other illnesses nothing perfect, any pre existing conditions nothing , perfect. She is beautiful, thank you I know , perfect. She wanted to run some blood tests to see why she is not feeling great on the inside because she is great looking on the outside !
Just so you are aware Jasmin has NEVER been to hospital in 8 years of living in Spain has not even had to go to see a doctor, my kids are never ill . So when we had to bring her in on Friday morning for some fasting blood tests, she freaked. Needles !
Now picture the scene of a her sitting in the chair waiting for her blood test, eyes like a scared rabbit looking at all the medical paraphernalia with massive earphones on blaring from her Ipod
of David Guetta "I am Titanium" ... I never knew she had a phobia of needles ? Why would I? She has never had to have one done ? Her Dad held her in his arms ( more like a brace lock than a cuddle ! ) I told her that it is a little scratch and will last literally 2 mins maximum while they take a tiny vial of blood. I LIED ... I CANNOT EVER BE TRUSTED TO TELL THE TRUTH apparently ! ... It took three attempts for the nurse to find a vein, they were collapsing where she had become so ill, it wasn't 2 minutes it was 9 minutes to fill up 7 large vials of blood not one . Halfway through, her blood stopped flowing because she was getting anxious and they had to wiggle the needle in her arm again to get it flowing which sent screams echoing around the room. A traumatic time is an understatement.
After the piddle in a pot we were told to go home and the results would be ready in about 5 days. The following days were filled with me driving myself mad again researching, googling, reading, self diagnosing. My father is Type 2 diabetic and has been for over 15 years, so he offered to lend me his spare testing machine, and start her on his diabetic diet until the results came through as it couldn't hurt . I tested her and the machine was "broken" I called Dad to tell him that its not reading right and that it just says HI .... I changed the batteries and the strips and tried again still not working only reading HI . HI would indicate readings over 33mmol or 600mg .
I kept a diary of what I was feeding her and what levels she was but I had it in my mind that it was something much more sinister, part of me was praying it was diabetes and not cancer. She had lost so much weight and was so weak, she hadn't had a period for months, but I couldn't understand that each time I held her she smelt so beautiful so clean so fresh and innocent surely she couldn't have cancer not my beautiful babygirl, I couldn't breathe, I felt so overwhelmed with everything, I couldn't bear to even say the words out aloud, I remember sitting with my Mum and not being able to speak just holding her hand and she was as bad as I was. Mum's are meant to be strong and know everything, and know what to say and do. Mine just crumbled she couldn't bear to think the worst either.
It felt like an eternity until the results came through but we were called to come in on the Thursday for the results. The blood tests indicated that everything was perfect, her hormone levels, her thyroid, her bloods, her cholesterol, everything they checked was perfect... but she had acetone in her urine and glucose in her blood her HBa1C levels were 13.4% and her liver was overflowing with glucose and in her kidneys were spilling over into her urine. She was losing her hair because her organs were shutting down. Her weight loss was because the sugar was eating into her muscles and potentially eating away at her internal organs, her skin on her hands and feet were starting to flake because the sugars were eating away at all the nutrients in the body. She was in a bad way. We were sent to the endocrinologist immediately, a very dishevelled man who was very sharp in his approach " She has type 1 diabetes, she needs insulin now" ...
Now because I think I know everything I am woman I am right . I explained that my father has Type 2 and has controlled his diabetes for the first 10 years with diet and exercise I showed him that I was checking her levels and that I can bring her levels down just give me 2 weeks and I can get her perfect... he brought a translator in and she explained to me everything that he had just said to me and she in turn told him everything I had already said to him ... what part of let me try and get her levels down on my own did he not understand ? If she starts on insulin that is it for the rest of her life? I don't want that for her I know I can do this ... He gave me two lots of tablets one which my Dad takes which is Metaformin and another to try Januvia . The consultant told me in no uncertain terms that he didn't give me 2 weeks he gave me until Monday then he would be admitting her into hospital.
I don't make promises lightly as I don't believe in broken ones. But that night I promised Jasmin with every ounce of love in me that I would not let them put her on insulin and we made a pact that we would work on this together and get her levels down and prove to the doctors we don't need the insulin.
I stayed awake all night researching on the tablet Januvia, on the site it says you should not give it to patients with type 1 .... so why did the doctor give it to me, I spoke to my brother whos eldest daughter is a ward nurse and the texts that were coming back and forth confirmed that she needs insulin, her organs are failing, get her to the hospital, I was turning into a wreck I wasn't in control anymore I couldn't do anything to help her this was completely out of my hands.. it was killing me. I wrote a request to a doctor on a forum for Children with Diabetes in tears crying out for help from someone, anyone to tell what to do .
We started the tablets on Friday 30th March at 7.30am, we had porridge for breakfast . Her levels were 256 10am 367 2pm 410 3pm 425 ! ? Her levels were rising and rising bearing in mind we had been on a strict diabetic diet for the past week too, these figures were dangerous God knows how high they were when the metre simply read HI . I couldn't take it anymore my babygirl was laying wrapped up in a blanket laying on the sofa freezing, her skin was mottled her feet and hands were like ice, her pupils were like saucers she was pale I could see her scalp through her hair, I had to do it I had to break my promise. I had been so strong in front of her I hadn't cried I hadnt crumbled as I thought if she saw me being strong, she would be. But I couldn't keep up the act anymore and I cried and held her and sobbed and told her that I am making an executive decision... ! ( still trying to make light of a bad situation ) I am taking her to hospital and there is a possibility that they will start injecting you. She needs to be brave and just trust me.
The 30 minute drive to the hospital was done in complete silence I could feel Jaz sitting in the backseat rigid with fear, Mick was swearing at every car on the road and I was in a complete daze, numb, empty. We were in the emergency room for less than 10 mins the triage nurse tested her levels she was 504 approx 28mmol they took her straight in to the paediatric doctor and was told they need to take bloods so we had the whole needle trauma again but tenfold... eventually they took her bloods and we waited for the results and she was given insulin there and then. She was admitted at 7pm on that evening, put on a drip as her body was dehydrating which contributed to the high levels and was monitored every hour throughout the next 24 hours .
The following 7 days in the hospital took me back when Rosie our youngest was born, she was in intensive care for 12 days her lungs were not developed when she was born so they put her on life support she had a pneumothorax and a chest drain, a blood transfusion, she was sedated for 10 days we lost her twice all these feeling came flooding back, I was so scared that I was going to lose her.
I sat there hour after hour watching the nurses come in to Jaz stab her finger look at the result then inject insulin into her bruised arms, watching her force food down herself, holding her while she sobbed in my arms, I couldn't let her out of my sight. I cant remember if it was the 3rd or 4th day but Mick "made" me go home and shower and get away from the place for an hour. Each day I was trying to take in what her levels were and what amount of insulin they were giving her but each time was different, they couldn't stabilise her they were pushing nearly 60 units of insulin into her then it was 14 then 19 then 24 I was so confused I was so scared and worried I didn't understand what they were doing and because of the language barrier I was suddenly forgetting all the translation and thinking how the hell am I going to do this at home? I dont know what I'm doing?
I couldn't sleep during the night I had scared myself stupid reading up on the internet about the complications of Type 1 diabetes. Knowledge is power they say, and of course you have to know all the side effects and bad things that could happen to you during an illness but when its your baby who has the condition you do not want to read that there is a syndrome called "Dead in Bed Syndrome" where their levels can drop too low and they slip into a coma and pass away before they wake up . I threw up all night in the toilet, it was all too much to take in . Jaz was seriously ill, this is a disease that is never going away, and I could lose her?
I wrote on facebook that night.
"No one writes a book about parenting, you learn as the years go by, no
one tells you that you will love them so hard your heart breaks, it just
happens, when they fall and hurt themselves it's automatic that you
pick them up and kiss away their pain ... I don't think I have ever felt
so much love for my little girl as I have over these past few days
please god I need my babygirl strong and have that Edwards fire in her
belly to kick this shitty disease into touch and give her the strength
to fight it ... Please send as much healing to help to get her sugar
levels stabilised so she is well enough for us to bring her home xxx"
I still cry when I read it back, I was sobbing when I wrote it laying on the blue plastic sofa in her hospital room with the pillow stuffed in my mouth to stifle the cries so I didn't wake her up.
The next day read
"I am so confused with all of the treatment they are trying everything to
get her levels down again .... Have now changed from injecting every
time she eats to checking her before they inject and if she is fine to
let her eat with no insulin which makes her levels go up before bedtime
then giving her insulin before she sleeps which brings her down but
sleep does that too so then waking her up at 3am to test her if she's
too low there's a problem and she needs food ..... FFS this is crazy no
two days are the same !!!! Midnight to 6am is a lonely time awake in the
dark watching over her in case she goes too low x"
The endocrinologist came in every day to see us, he said we could go home on the Wednesday but Wednesday came and went her levels were still all over the place so it would be Thursday. The nurse came in and said "ok you go home today" and walked out... ???? What do you mean we can go home? I don't know what I'm doing? How much do I give her? What does she eat? Do we come back and see you ? What happens if she is ill? What do I give her if she starts fitting? What do I do if she is too high? What number do I call in case I need your advice? .... NOTHING.
We left the hospital with a piece of paper saying if she was below a certain level give her X amount of insulin another level indicated another amount insulin. 3 times a day and the long lasting insulin at 14 at dinner time.
.................................................... That was it.
I asked what can she eat? No grapes or bananas and no sugar. You carry on as normal you control the insulin you dont let the insulin control you, see you in two weeks !
The first night home was like being at home with a new born baby, with no antenatal classes and no midwife or health visitor on duty.
I was sat with my head in a book reading what I needed to be doing and cooking while Jasmin completely blew me away by announcing "Mum do you want to read my blog?" She had been out of the hospital less than 6 hours and had set up this blog to help others and put her feelings down on paper/screen. She has been so resilient, so matter of fact, so inspirational she has made me so proud. She has her moments as we both do but she is doing really well.
In the past 5 weeks we have got into a routine, we have been back to the endocrinologist another 2 times, each time he is really pleased with us , Three weeks into diagnosis he put us on Carb counting so another change for us to get our heads around, but we managed it. He gave us a goal to get to an average of 150 for the week we have smashed it today Sunday 6th May we have hit an average of 138 ! Which is an amazing feat considering the last average from 3 weeks prior was 468 !!!!!
On a light note ... its hard to tell the difference between a diabetic strop and a teenage strop but now that I am getting stronger and more confident I can start giving her "Edwards Glare" again if she pushes it !
Being in Spain makes you feel very isolated there are no support groups No Diabetic Specialist Nurses, No Dieticians. Also children are only classed as children up to 14 so come December Jasmin will be going into Consultations and appointments on her own, without me not that I would not want to be there I will not be ALLOWED to be in the same room, which is not acceptable to me, but I will cross that bridge when I come to it. So I found a fantastic support group Facebook which supports Parents of Type 1 Teenagers it has been an absolute godsend .
We crossed the hurdle of needles and she now injects herself ... I did a little trick to get her used to it. For a start I bought her some 4 mm needles unlike the 8mm the doctor gave us. So they are smaller and less scary LOL ! ... She was sat in the kitchen on the worktop while I was cooking and I sensed her wanting to talk to me or ask me and I knew what it was so I started the conversation off about the needles and got a blank one, pinched my skin on my tummy and stuck the needle in myself and left it in there ! Walking around the kitchen with the needle hanging out of my stomach to prove to her that it doesn't hurt. Then I got her holding the insulin pen, then progressed to using a blank pen and she was playing with her younger sister "injecting" her arm then Rufus the JDRF bear to injecting oranges and lemons THEN... the blank needle in her leg then for real with an injection of insulin.... all in one afternoon . She was so chuffed ! So was I !
I am still night testing at 4am every morning the alarm goes off and last night was the first night that she slept in her own room , she has been in my bed since leaving hospital. I know I have to let her go but I really don't want to ... I want to wrap her in cotton wool and never let her out of my sight but I can't . It's not healthy and it won't help her. I know that we have to just get on with it and not let it rule our lives but its so hard !!!
I try somedays not to mention diabetes not to mention carbs, insulin, levels, testing, but its impossible. As soon as I wake up I'm thinking of what she is having for lunch and working out how much she needs to inject, we have sussed breakfast as she has the same everyday ! LOL one less thing for me to worry about.
School was another hurdle she started the week after the Easter holidays the first week of her two week break was spent in hospital and the next week was perfect for us to adjust to the new routine, so going back the following week to school was fine.. or so we thought . Every child is different but it was just too much for her to cope with, she had been so strong for so long and it all came on top. A full day at school testing herself injections, being brave, being the "new" girl again in class, then three hours of homework ... it all got too much and she had a little breakdown. So we left it for another few days and started her fresh the following week.
I am trying so hard to keep it "normal" in the house. Without being on her back all the time, now that I am calmer about it I think its helped at home. The school was doing a 24 hour readathon on Friday a sleepover with groups of kids reading every 20 mins which meant NO SLEEP at all ... I was petrified. It definately tested my ability to control her levels the poor little bugger was being tested every hour and half, sleep deprivation, excitement, running around with her friends, sleeping bag hopping but we did it just a constant flow of biscuits, weetabix , milk !!!! We got there but it was hard graft. But if I can do that then I am confident I can control anything now x
I am knackered and exhausted my alarm is set for 4am every morning and 7am . My life is no longer my own but from the day I found out I was pregnant I knew that was the way it was going to be anyway.
Jaz, I'm always here for you, you are never on your own, we are all going through this with you. And as Grandan says Everyday in Everyway you are getting Better and Better ! I love you Jaz 831 always x7