The Worst 15 Minutes of My Life

Today I was up with the birds and got Stephen to drop Jack and I of about a mile outside Bromley as it was on his way to work and I walked in and got there as people were dashing for trains and the shops were just opening. My plan was to buy Jessica a christmas present (hadn't actually planned on buying her one until Jackie got one for Jack!!) and some crackers and then meet up with Susannah for quick coffee before heading of home.

Met up with Susannah, had a coffee and we were on our way back out of the Glades shopping centre, Olivia and Jack hand in hand like a couple of love birds and we got to Tie Rack and Olivia turned around and reached into her buggy for "me julie" (my gilet!!) and I just quickly glanced at her and laughed at her pronounciation turned back round and Jack was gone, and I mean GONE!! One second he was there right at the wheels of my buggy and the next second he had evaporated into thin air. It was very very busy and I was charging around the shoppers trying to spot a 3 foot tearaway in a light blue puffa coat but he literally was no where to be seen. And so began the panic, my son had literally vanished of the face of the earth I left Susannah with the buggies and was screaming Jack's name around the shopping centre, darting in and out of shops, other women were shouting his name too, asking for a description, others were cussing me for tripping over their buggies but I didn't have the time or inclination to get into a battle of words with anyone. Then this woman came to me and said "Look you have to go to the information desk now and get security on to it, these women will continue to look for him". So of we ran down to security, I'm by this point an absolute wreck, and so this woman (whose name turned out to be Tracey) told the security bloke that a 2 year old boy was missing, his name was Jack and he was wearing a blue puffa coat. I managed to find my voice and the bloke was on the walky talkie, the cameras were all ordered to look out for a 2 year old caucasion with very blond hair, blue puffa coat, osh kosh jeans, brown clarks boots and answers to the name of Jack. It just seemed like nothing was happening for ages, I was in a real blind panic, all sorts of things were going through my head, I kept wailing that it was too quick for him to disappear on his own, someone had taken him. I really did believe someone had just picked him up and gone of with him, Jamie Bulger came to my mind. I kept thinking that I would not be having christmas with my baby, I'd never see him again, your mind does weird things when this sort of thing happens, you just don't think straight and weird thoughts come into your mind, at one point I was thinking about what I would do with his christmas presents. Just wild random thoughts, but the main one being that my baby boy was going to either never be seen again or would be found dead somewhere. And then I hyperventillated and fell to my knees and I ended up with a first aid person from the desk looking at me and telling me to breath through my nose and out my mouth etc and just as they were helping me up the news came over the radio that Jack had been found!! Within a few seconds I could see him being carried by another young guard and obviously the big security boss with them. When they got to us I kid you not we all had a group hug, me Tracey, the security guys, the relief was like electricity in the air. He had been found by a young woman who had heard the description of Jack being given by the woman called Tracey and she was on her way out of the shopping centre and as she passed the Thomas the Tank Engine ride she spotted him, picked him up and gave him immediately to a security guard. She came down with them, she was worried that she might be accused of taking him but obviously no one thought that for a second. So my son had literally just gone to the other side of Tie Rack where there is an exit to the civic centre and a main road and spent an entire 15 minutes in a bloody Thomas the Tank Engine ride, had I just looked to my left when I was looking for him I would like to think I would have seen him straightaway and there would have been no need for utter panic. Jack of course was totally obvlivious to the utter nightmare that had gone on over him.

This happened with Phil when he was the same age, my mum was holding his hand in the Glades, she went to look at something in a shop but didn't take him with her assuming he would come and hold onto the buggy with his brother, but it took 5 minutes for security staff to find him and he was in Bows and Bangles trying to put things in his hair.

When I rang Stephen and told him he went mental, he's not happy with me and says he'll "discuss" it with me when he gets home. Said he's not blaming me but there are things about the way I am which mean I'm not careful enough with "his" son.
I'm still shaking now 5 hours later, of course Jack has had whatever his heart desires since he got home.

On a lighter note I bumped into a very pregnant Sally with Oscar and Sally's sister and missus. She looks fab!

It's 4.30, wondering if it's too early to partake in a little alcohol, I really need it, my arms are hurting from all the shaking, as well as the fact I'm not particularly well, my head throbs and my chest actually hurts from my heart hammering away earlier and my hyperventilating. I know these things happen, but sometimes I just wonder why it always seems to be Jack who gets into one mishap or another!! Just looking at the photos below of him in his dressing gown and it makes me cry, I couldn't imagine this world without him, let alone my own world. He's my little star and today made me realise that I couldn't give a shit about potty training, his sleeping in my bed, his not eating his fruit and veg and his not being very good at talking, I'm just glad he is here with me, at home today, and for a very long time to come yet!

I have moved to Vox now for my blog http://serialdieter.vox.com/ as it's much safer as you can choose who reads your posts you do have to join to read mine I'm afraid!

Please Don't Hate Me But.....

......we paid a visit to the barbers today

Jack was as good as gold until we got the fine tuning towards the end. He sobbed his heart out when he saw the finished results. I didn't realise he was so attached to his hair bless him. Or maybe he's worriee Olivia won't love him anymore with out his flowing locks! Still I love it and it will grow back thicker and curlier so I either let it look odd for a while until it does grow back or I keep taking him to the barbers regularly for a cut.

Well Done My Son!!

This saturday I received a letter from the school saying that Daniel has been nominated for the school gifted and talented programme and would I give my permission for him to take part. Whilst I have had misgivings about the fact that Phil who is on a level playing field with Daniel academically has not been nominated (but who knows a letter could turn up for him tomorrow) of course I'm giving my consent - what mother wouldn't. I have two extremely bright boys whom I find it very difficult to occupy these days, their brains are in need of constant stimulation and I think this is why they fight so much, and why they have always fought. Well done Daniel for proving the poxy educational psychologists wrong and doing so well in mainstream school. He's in his element in secondary school, it's like I'm seeing a totally different boy, he's confident, enthusiastic and literally buzzing from it all and is rarely home before 4.30 because he does after school activities most days. Every wednesday from now on he will participate in "stimulating" activities after school starting with "cube plaiting" on 1 November - what the fu.......???!!!

It's Hard Work Being Cute.....

If you happen to be....

.....in the vicinity of a book shop at some point then why not check out THIS! It's called Knitted Toys and it's by Zoe Mellor and it's got fabulous patterns for 25 knitted toys and yes, you've guessed it, Jack is in there!! He's modelling 3 of the toys, the squeaky pig, the ball and the hanging fish. His name is in the back spelt incorrectly which peeved of Stephen but who's gonna read it except the parents of the models! Can't believe he was a weenie 18 months when he did the shoot, 9 months ago, he's grown up so much since. Proud mummy alert I know, but the first time you see your child in print is always the most exciting. With Daniel after about the 2nd or 3rd the novelty pretty much wore of!

Can't scan the pics onto here I'm afraid in case someone starts a knocking on my door!!

Quick Catch Up

Been a month since I last posted - how bad is that?!!

It's been busy busy busy, we've had Jack cracking his head and rushing into hospital with mild concussion, Daniel loving rugby despite his muscle condition meaning he shouldn't really play it but he tries out for the rugby team on Monday's after school and I'm sure his turn will come soon. Daniel has also shot up quite alarmingly so recently, towering over his brother and now over 5 foot tall, his posture is trying to get to grips with his height so he looks a bit stooped at the moment but I'm sure he'll get there. Thankfully I'm tall so I don't feel too threatened just yet! His teacher is arranging for him to be re-assessed in terms of his autism, he doesn't see it but he probably has yet to see elements of Daniel's behaviour which give cause for concern. I'm certainly finding as he gets older his temper is getting worse and he's completely unreasonable. Maybe that's just an age thing, they will be teenagers in a year but I'm sure it's not normal for a child to scream like he's being slaughtered as Daniel does.

The move is on hold, Stephen may end up with a promotion in his job as his current boss doesn't know his arse from his elbow and that would mean more money and management skills which would enable him to set his sights a bit higher when we do come to move and he needs to look for a job. I've decided I'm probably going to resign from the Civil Service, there are no jobs available and they don't seem to keen too help me find one. I've applied for a job just 50 yards up the road from my front door as an administrator for a food brokers and I had an informal chat yesterday and have been invited back for a a formal interview next week Haven't even seen my CV yet, the minute I said I was a civil servant and managerial grade they wanted to see me! Competition is tough but at least it's practice after two and a half years in nappy wilderness!! Salary quite a bit less that what I was earning as a civil servant, they're prepared to offer me approx 20k or slightly more if I do get the job, so it's about 25-30% less but it's a small price to pay for a job within spitting distance of my front door. They seem keen on the fact that my ex husband works as the company secretary for one of their rival companies, almost as if they think they've nicked someone from over the enemy lines so to speak. But whilst I'm fairly confident, I'm not that optimistic, 2 1/2 years is a long time to have not been working. It's a full time job as well which is quite daunting but financially it's not always viable to go back part time when you have to pay extortionate childcare costs, which round here are approx 30-35 quid a day.

Jack finishes pre school two weeks after half term, I'm not happy with the nappy changing issue, Jack is fine at home but needs a pull up for when he's out and about and they won't change nappies and I'm constantly walking up there to do his bum. Silly that they take them from 2 years of age but won't change their bums. So he's going to start a proper nursery after christmas, 2 afternoons a week where accidents will be dealt with if they happen. Hopefully I shall have hte potty training issue sussed by then.

Er, what else. Been out getting legless a fair bit, crawling through the front door at around 3.30 in the morning. My days of getting away with that the next day are long since gone so I'm trying to curb my social life for the next few weeks.

OOOOOHH!! And I finally met my 4 month old nephew Liam yesterday. My sister in law brought him to my mother and toddler group and he's so like Jack in build and temperament. Wriggly yet permanently happy, never cries and doesn't like drinking his milk very much either, which I've had with two of my sons. Stephen and his brother are not yet speaking, it's been 10 months, but I think it's close to happening. I was a bit heartbroken to find out my father in law visits Liam at least once a week yet he's still not speaking to us and hasn't clapped eyes on Jack. I don't think my sister in law should have told me he dotes on Liam because it does anger me, to think that a grandfather can choose to spend a lot of time with one grandchild and not spend any with another and want nothing to do with him. It's heartbreaking, he has to go past our house to get to my brother in law's flat (my old flat) so I just can't understand how it doesn't even cross his mind that he could quite easily see the other one too if he really wanted to. I'm tempted to send him a photo in the post, I'm not sure if he would rip it up though, but I can't see what harm it would do. Any advice on this issue would be greatly appreciated.

Jack's been to a few parties recently, he went to a little girl called Elli's last week at Adventure Kingdom and she absolutely dotes on Jack, follows him around, hanging on his every word, she's just besotted with him - but Jack - well, he doesn't even know she exists, he has eyes for one woman only these days and that's Olivia and I do feel for Elli, but at least at her birthday party he wasn't perturbed by her joining him in the Thomas the Tank Engine ride.


That's all folks!

Could I One Day Owe My Life to a Pig?

And by pig I don't mean a policeman! I mean the pink, curly tailed, snouty, oink oink kind that roll in mud and smell not too great!

The TV medical drama Holby City, has, I think, over the last year at least been having quite a lot of storylines surrounding the issue of kidney failure, dialysis and transplants. Casualty has done it's fair share too. It is a big issue in this day and age with the change in donor laws this month, more awareness of transplants and being a donor on the donor register (everyone must get on it PLEASE). But just lately, it seems, that everywhere I turn I am confronted with a reminder of my own fate in terms of my own illness. Not least last night on Holby City when the storyline focussed on the illegal trans generic transplantation of a pig kidney into that of a man (ironically a jewish man!!).

For those of you that don't know, I suffer with chronic kidney failure, also called chronic renal failure. Following an almost deadly encounter with meningicocol septicaemia when I was nearly 4 I developed an immunological disease called Focal and Segmental Glomereloschlerosis (FSGS). This means that my immune system takes offence at something in my body for no apparant reason and systematically attacks it 24/7 - in my case objects of my immune system's loathing are my kidneys. The last 30 years have been for the most part fairly normal, save for regular check ups, 24 hour stays in hospital every 3 months as a child for monitoring and tests. I had the slow progressive form of the disease, which, in some cases can disappear altogether, but, it certainly explains why I've been able to have children, as many women with kidney disease are unable to conceive let alone carry a baby successfully. Unfortunately my kidney disease has progressed to the point where my pregnancy with Jack was severely affected, he was born at 32 weeks weighing 10 grams short of 3lb having suffered from a condition called IUGR (Inter uterine growth retardation) a direct result of my kidney failure and the pre eclampsia, and in the minutes leading up to his birth I was so ill it was thought I was going to suffer a heart attack because of the fluid build up in my body and my extreme potassium levels. I was told 3 months after he was born that my kidney function was down to just under 20% and that a transplant would be needed in the next 1-2 years. My kidney disease has caused something called IGA Nepropathy, this is scarring of the kidneys which causes them to shrink. The average kidney is roughly 12 cm in size, mine are around 9cm. This may not sound that small, but when you think that quite a lot of what is left is dead scar tissue rather than active kidney it's quite scary. Had I been diagnosed with FSGS now, in it's early stages then it can be treated with immunosuppresants but that sort of treatment was in it's infancy 25 years ago and now I'm too far gone for it to be of benefit.

As it stands today I'm fairly well, all things considered. My kidney function has doubled, by some miracle it has to be said, but I'm still chronically ill and the prognosis is still the same, the time frame has just changed a little. Kidney failure, is, to all intensive purposes a terminal illness, there is no cure. There are treatments, dialysis and a transplant being the two that everyone knows about. A transplant is NOT a cure, it is a more effective way than dialysis of treating kidney disease. A transplant is followed by a life long regime of immunosuppresants which themselves have side effects, not least, making the patient more prone to the ravages of some cancers, especially skin cancer and cancer of the blood. It is hoped that I will receive a transplant from a live donor i.e. a member of my family, my mum and my sister have been identified as potential good donors, however, the longer I keep going on the kidneys I was born with the less likely my mum is to be a donor as she is obviously getting older, and whilst she is only 53 next month, who knows how long it will be before I need a transplant. Potentially if I go another 4 or 5 years my eldest sons could be considered as donors - we are the same blood group for start! Transplants also don't last forever, though some do, especially those from a living donor, but the average life span is about 10 years. A scary statistic for me is that if I had to start dialysis tomorrow and never received a transplant, I could expect to live approx another 14 years - that would make me 47 - hardly a long life is it?!!

Like I said at the moment I am, by my standards, fairly well. I've never fired on all cylinders really so my standards of healthy probably fall well short of a normal healthy person. I suffer from tiredness like you would not believe, I fall into the trap of having a few days when I feel completely well and over doing it and then BAM I'm both mentally and physically drained for up to a week. It is my ferritin levels that are low, that is the iron, not the stuff everyone thinks of as haemoglobin, which, in my case is pretty much about normal. Iron infusions direct into my blood stream fail to solve the problem and the doctors have given up for a while. But an average ferritin level is around 250, mine hovers between 35-60. The kidneys are responsible for quite a bit that goes on in your body, they control the blood pressure, the toxins in your blood, your calcium levels, your iron levels, your potassium levels which are responsible for regularing your heart muscles, too much is a very very bad thing! I am on a blood pressure tablet, high blood pressure causes kidney disease, kidney disease causes high blood pressure, it's a vicious circle! I don't take anything else, my bloods are, except for the toxins which are creatinine and urea (both double the higher end of the normal range) pretty normal with no suggestion that anything is wrong with me, just the high level of toxins and the low levels of ferritin. Another baby would render me on dialysis, and the chances of it being successful are, according to the powers that be, quite low, especially considering my being prone to twin pregnancies. In December of last year Stephen and I discovered the consequences of my being pregnant on the tablets I am on which, should, in any event be stopped at least 3 months before conception if pregnancy is planned. They are toxic to an embryo and even if I had gone on to have a baby there was a good possibility that it would have suffered some sort of permanent damage from my tablets, most probably a heart defect or brain damage. So it's just not worth the risk. People do assume that because I have 3 kids already that makes it alright not to have anymore. But, although I don't want another child (15 shirts to wash and iron each week is ENOUGH thank you!!) the thought that that particular part of me is gone is quite a hurdle to overcome, it's like having part of what makes you a woman, your femininity so to speak, ripped from you without your consent.

Do I worry about what lies ahead? Yes, god yes I do. when they told me I would need a transplant in 1-2 years my world caved in and I cried like I have never cried before, and in fact Stephen cried more than I did. The boys, it has to be said, took it bloody well and immediately said that if I wanted a kidney I could have theirs (I may just hold them to that one day!!). When I got my Civil Service pension statement through a few months ago I wondered if I would actually be alive in 2033 to reap the benefits when I'm 60. The thought of dying doesn't really scare me, but the repercussions of my dying do. What if I went in the next few years - the brothers would be split up - the twins going with their dad and Jack staying with Stephen. What about Stephen, I think he dreads me dying more than he should do, he doesn't talk about it, but I know the whole thing scares him shitless. We don't really talk about it, my mum and dad never really did either, they brought me up as they would any other child and my kidney disease was just something I lived with, and not in spite of. I owe a lot to them for never dwelling on it, not wrapping me in cotton wool, I think that their laid back approach has been beneficial to my health because I've developed the same approach, with some areas of caution regarding my diet and the activities I do, but a positive attitude does do a lot of good. Sometimes I do use my disease as an excuse for things - like using the disabled loo if the women's loos are full, if anyone asks I just say I have kidney failure - which is a recognised disability anyway - and no one bats an eyelid after that. I do get cross about things like being treated like a skivvy for the boys and stephen and do have a go at my very lazy husband that considering his knowledge of my health he seems to do nothing to help make life easier for me round the house. Common conversation with my nearest and dearest "I'm so tired I can't lift my head I think you'll have to help me to bed". The old man responds "What you tired for - I've been out at work all day?!!" Nuff said!!

This post hasn't quite gone the way I wanted it to, I just wanted to voice out loud my opinion on pig transplants but have ended up rambling on about kidney disease and what it is and how it affects me. But I think perhaps, that is a good thing, I get so many silly comments made everytime I have a glass of wine in front of people "should you be drinking that?" "won't that stuff kill you?". Lets get this perfectly straight ALCOHOL DOES NOT CAUSE KIDNEY FAILURE, unless of course it's abused and the liver packs up in which case the kidney bares the brunt of pure alcohol pouring through it with it's not supposed to do. My liver function tests (LFTS ) are pukka, I have a perfectly healthy liver and I will continue with my perfectly healthy consumption of wine!

The subject of pigs as potential kidney donors has been mentioned several times to me by my nephrologist. Perhaps he thinks I will go on long enough to be considered as a potential donor without having the need to put a family member under the knife. At the moment the very idea makes me feel ill. I know that heart valve replacements are made from pigs, but it's just the pig tissue, it isn't a functioning organ. At the moment it is a long way of, scientists are battling with the problem of CJD and other animal diseases which a recipient would be prone to if they were to take on the organ of a pig. Work has been done in Canada and the states on a synthetic kidney, this would be inserted like a normal kidney and replaced quite easily should it go wrong, but, again it's a long way of being used as the norm, results are mixed and it's been tested on those who have had acute kidney failure (when the kidney fails for a short period of time as a result of another illness, accident etc). Maybe, when the time comes for me, and I'm desperate for my life back I would consider it, but the thought of being asked if I knew anything about my donor and having to say "yeah, it was a pig" just doesn't sit well with me at the moment.