All grown up.

She's 18 tomorrow. I'm a bit speechless really. I'm the parent of 3 grown-ups - you turn your back for just a moment........................

Em wrote this recently,


22cms of my life.

There are 22 players at the start of any football match.
Superextraordinarisimo is a word with 22 letters it is the longest word in the Spanish language. It means `extraordinary'.

Psychologically, 22 is the easiest number to recognize by the human brain due to its curved shape.

A "Catch 22” situation is one that; no matter which way you go, there is an undesired and negative result or outcome.

22cm is the length of the scar that will be forever on my chest, and 22 is the number of days I spent on life support.

It would be much easier if I was writing this at the age of 22 as it would add great comedy value and witty standing to what I’m about to say but sadly I’m not and I can’t; I’m only at the meek age of 17. God doesn’t want this article to flow properly and couldn’t help me out by shortening the length of my scar, darn you Lord! You’d think if I was addressing God I’d be asking for the removal of my scar and the reasons alongside it – but I like my scar. I like my heart condition. I like who it makes me. Of course I don’t high five passing hospital patients at the genius luck of having a life-long medical issue. But I don’t hate the world for how it made me.

For as long as I can remember my heart has been a hot topic and something to be looked after. I was born with ALCAPA (Anomalous Left Coronary Artery from the Pulmonary Artery; if you want to get clever and Google it!) I’m not going to bore you with its details but in summary my heart is plumbed differently and works harder than other ‘normal’ hearts  (I dislike referring to myself as not-normal or with an ‘abnormal condition’ because as far as I’m concerned, I’m a common Joe – and who the hell is Joe anyway?) I had an operation at a very young age to correct what Mother Nature had failed at and it meant I would be on medication for the remainder of my years and require regular checkups at the hospital – for years I travelled back and forth on the dreaded British Rail networks to see doctors and consultants and specialists. I’ve been poked and prodded and forced to cough and “breath in now for me please”. I’ve had dreaded MRI scans where you feel more trapped than Chilean miners or fitness tests that were clearly devised by a sick health freak to make you run unattractively on a treadmill just to prove how unfit you actually are! I’ve had more surgical procedures than Katie Price.

Yet I still love how I was born and who it made me, my scar is my life, my heart is obviously my life; without it I wouldn’t be here (stating the obvious) but I mean it – my heart works it beats just like yours, it works and that’s all I care about. It’s given me 17 years of none stop entertainment and I will never let it stop me, I live my life just like the rest of you. My heart condition has made me appreciate the life I lead, the people I know, the places I go (starting to sound like a TakeThat song) people try to wrap me up in cotton wool, protect me for the big bad world because Em’s poor heart won’t take it; don’t feel sorry for me. Feel sorry for the children still fighting for a life I’m already living or the fact that the economy and the government are heading down a public toilet; or that you might die in 2012 (very unlikely, I have a holiday booked in 2013) the point of this teenage rant is that as I begin to age, (it’s all downhill from here!) and experience the transition to  adult care, I feel that I’ve had an superextraordinarisimo life so far (see what I did there) not in spite of my heart condition but almost because of it. I have a great life to look forward to; and my 22cm scar will be there every step of the way.

I think it's rather good,

Happy birthday sweetheart.

This blog started as a way of telling Emily's story; as the last post was about her 16th Heart Day I think it's an ideal time to move on.

I'll be blogging here from now on and leaving this one be. I'll update on any heart related news (hopefully that will be few and far between as no news is usually good news) but otherwise come see me on the other side.

If you happen across this blog in search of someone with ALCAPA then feel free to read Em's story from the start, see how far she's come and then leave a comment or mail me. I'm always happy to be in touch with other families.

Take care

Update#1 21 July 2010

Emily is officially a GUCH! (Grown-Up Congenital Heart)

She had her final appointment at the Children's hospital yesterday and has been handed over into the care of the Adult team at the QE. It's a huge milestone and I felt a tad emotional leaving the hospital for the last time; they've been a massive part of our lives. We have much to be grateful to the Children's hospital for; they pulled her back from the edge when she was diagnosed and she survived, unscathed against all the odds. Thank you Dr Wright, Mr Sethia, Mr Brawn and your wonderful, dedicated staff.

We lost our lovely lifelong cardiologist Dr Wright last year - he was tempted away by a new life in New Zealand (and who could blame him?) so were feeling a little cast adrift but now we can make a new start with a new team.


Change is the law of life. And those who look only to the past or present are certain to miss the future." -John F. Kennedy

Update#2 24 August 2010

Emily picked up her GCSE results today. A good crop of A* to Cs and I'm inordinately pleased. Her attendance at school hasn't been fantastic over the years but the girl came good!

And now it appears that I suddenly have no school-age children; just students who are a drain on my finances and test my sanity. Bless 'em!

Update#3 11 October 2010

Our first GUCH appointment today. We saw Dr Sara Thorne at Selly Oak hospital. She was lovely -not a bit like I expected. I'm not sure what I expected; maybe that she'd have two heads or something!? It was just a quick 'hello' visit really - Em has been booked in for a load of baseline tests which incudes the dreaded MRI. That was the only bit she was unhappy with. If all is well we can be seen by the same team but at the outreach clinic at our hospital. I'm happy with that especially as this trip it took us 2 hours 10 minutes to travel the 55 miles to the hospital; the M6 seemingly, as usual just like a very big car park!

Update#4 2 August 2011
Well - almost a whole year with no updates. How good is that!?

This Saturday (which is unusual in itself) Em has a Myocardial viability scan at the QE in Birmingham. The scan will show how damaged Emily's heart muscle is. Before she was diagnosed she had a couple of heart attacks and the lack of blood flow to the muscle means she has areas of damage. How well her heart functions, particularly under stress depends on the extent of the damage. Fingers crossed the news will be good. Stress test, ECHO and the usual MOT in another couple of weeks.

16 Years.

This week was the anniversary of Emily's diagnosis and surgery. It's like a second birthday; you know, like the Queen has. We celebrate it because we very nearly lost her that day (and several times over the next few weeks). It's just a chance to be grateful really.

Back on crutches.

Em took a tumble on the ice and damaged her knee (the one she's had surgery on). So after a lovely afternoon (and well into evening) in A&E she has a whopping great bandage on and is hobbling around on crutches.

The world and his wife (and his kids) were in A&E. You have time to ponder whilst there. For example - why do they have a sign that says 'Waiting time 1 hour' when it's a dirty great lie? You do get to see someone in around an hour then they send you to sit on another row of chairs to wait for a further two and a half hours to see the person you really need to see. And why would you sit for the requisite 3 1/2 hours with a two year-old with a sticky eye when a trip the the pharmacy would see you sorted? And why, when you obviously won't be seen within 2 hours does the pay and display machine only allow you to pay for 2 hours? Thus meaning you have to vacate your comfy chair, brave the snow and put some more money in, knowing that whilst you've been loading the machine your name will have been called and because you didn't spring from your seat immediately your card will have been put to the bottom of the ever growing pile.

Sorry bit of a moan. Love the NHS on the whole but badly in need of a drink now and am abstaining for a couple of weeks.

Snow!

Didn't walk yesterday as it started to snow quite heavily but it dawned bright and cold this morning so we've been out for a good couple of hours walking the canal towpath and over the golf course; even took photos to prove it!

Happy New Year!

Starting as I mean to go on. I have been informed that my life now spans 6 decades. Now that doesn't make me as old as you'd think, but does make me realise that getting a decent amount of exercise is as important as ever.

So since my last blog post;
New Year's Eve - 5k run
New Year's Day - 6k walk ( at my husbands pace which pretty much has me jogging).
Will walk again today as running is a tad dicey on the ice.

Not looking back this year either- onward and upward. Still trying to do more and procrastinate less; I have a few mundane tasks that I need to do this Spring so will post them and hopefully be able to tick them off by Easter.

Get the drive resurfaced (5 years since our extension was built and it still has a bloody great hole in it)
Upgrade the house alarm.
Sort the chip on the windscreen, and the dodgy extractor in the loo.
Decorate downstairs
And in light of the above, reassess the finances.

There's more but I've forgotten. You see this is the problem. I forget stuff and then remember it again but forget to write it down. Must be something to do with spanning 6 decades.

1st run of the New Year

Well, it isn't really the New Year yet is it but I need to tick this one off as I've not been out much recently. The weather has been dire and my health even worse. I've not even braved the gym.

I must have been desperate because the wind was bitter and there was rain. Rain FGS! You will have learned that I am usually a fair weather runner, but having a new cold weather running top from Father Christmas off we went; a close call on the ice at the bottom of the road foretold a slow and stuttering 5k. But we made it without toppling into the canal and it's good to be back out. Hopefully the year will see an improvement in both time and distance. Maybe.

Good Morning and a Very Merry Christmas.

What, you may ask, am I doing blogging on t'internet on Christmas morning? Well. All is calm and peaceful here - my husband is at work until noon and the children, if you can still call them children are languishing in their beds. He'll probably be back before they surface.
I'm having a cuppa (with the obligatory tot of whisky), have my Christmas socks on and my feet up. Tis the calm before the storm; I'll have to battle with a 14lb turkey shortly, plus all the trimmings so I'm making the best of it and refusing to be stressed at least for the time being. By 1.30 I'll probably be redfaced and the air will be blue as I'll have burnt the carrots and forgotten the cranberry. Wouldn't be Christmas without a bit of swearing!

Enjoy!

Greetings....

I am still here, just not finding the time to blog much. Plus since number2 son went off to uni I've had my computer time seriously curtailed by my other two offspring as we only have one other decent laptop in the house. He'll be back shortly though and the bloke in red may be bringing a new laptop too. Note to self - may need more download allowance :-o.

I've got a well-earned morning off on Saturday so I'll post an Autumn catch-up then.

Laters x

For Harry, My Father In Law.

Do not stand at my grave and weep

I am not there, I do not sleep.

I am a thousand winds that blow.

I am the diamond glints on snow.

I am the sunlight on ripened grain.

I am the gentle autumn rain.

When you awaken in the morning's hush

I am the swift uplifting rush

Of quiet birds in circled flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry

I am not there, I did not die.

Mary Elizabeth Fry

Not your average 16 year old

Emily is 16 today.


And she's not here - she's in Germany on a school History trip. Off they went at stupid o'clock this morning. I pity the staff I really do - just four of them here for a pizza party and the noise level was off the scale. If you flew Heathrow to Munich at around 7 am this morning I do apologise.


We didn't really get what it said on the tin when Emily arrived. For starters I thought she was going to be another boy, and she was supposed to be of average weight. She doesn't know the meaning of the word and weighed in from the off at just shy of 10lbs. And obviously she had some out of the ordinary plumbing and has developed an out of the ordinary attitude to life.


Happy Birthday Em. Enjoy. I know you will.

So a week has gone by and my purse is a little heavier, my washing basket a little less overflowing and the fridge a little fuller. But the house is a little more empty and not quite so insane. I do miss him.

This week's news

We had a trip to cardiology this week (following our cancellation a short time ago) - and all is well. Actually, all is the same which is still good news. Emily has to go back in a couple of weeks for a treadmill test to measure her exercise tolerance (or lack of). This will be interesting. As is the way with many teenage girls, exercise is not very de riguer and she doesn't find getting redfaced and sweaty very appealling. Watch this space!

Another piece of news this week is that the DWP with their usual predictability have turned down our renewal request. I find it a little disconcerting that the same claim that produced an award last time is unsuccessful this time. I wouldn't mind so much if they were bloody consistent.

No2 son (and the no2 only describes the order in which they arrived, I must make this clear) is off to uni tomorrow. Sob. On the plus side my recycling bin will not be full of beer cans and the phone bill might be a little less. Every cloud and all that.

Extraordinary task #345 & Sod's Law

In order to keep on top of the mess that continually rises around me I set myself a couple of extraordinary tasks every week. You know the sort; tidying the linen cupboard (I'd enjoy that but I don't have one), the glory hole (under the stairs, to the uninitiated) and wiping the skirting boards (I don't look down for the rest of the time).

Today's task is the Man Drawer. You've heard of these haven't you? Even households without man in them have a Man Drawer.






Here's ours.

It contains many Useful Things, for example, expired Library Cards - for scraping ice from your windscreen. Mainly though it holds useless items that no-one takes responsibility for throwing away; Pencils (blunt) and pens (mostly with no ink), expired batteries, non working headphones, the 'gifts' from last Christmas's crackers.......ad infinitum.

Every so often I have a good clearout but you know what? The very next day I find that I need that Thing that was in the Man Drawer and I have to rummage through the bin for it and restore it to it's rightful home admidst much raised eyebrows and 'I told you so' from the Man of the House. Sod's Law.

PAT has gone...

But in the worst possible way; the appointment was cancelled. This is most frustrating. Note that I'm being incredibly polite here and respecting that I may have sensitive readers who don't wish to read my effing and jeffing. It means that PAT hasn't truly gone and is just lurking in the corner ready to pounce.

I will Keep Calm and Carry On.

I have a visitor. PAT is here.

PAT has arrived and is an unwelcome visitor. She came a little later this time as I've been busy and my head has been elsewhere, but she's here all the same.

PAT - Pre appoinment tension (this is an abridged version with all credit given to the lovely Sheran at Heartline)

PAT is a chronic condition suffered by parents with sick children. The symptoms of which are mild until the arrival of the brown envelope where by they become ever more acute leading up to the appointment day.

The arrival of the envelope and date is sometimes accompanied by the very early stages of the acute condition. Trembling hands, moist eyes, butterflies in tummies, feelings of both regret and sadness are common. As is an overwhelming physical urge to burn the blooming thing and run away with the child in question. Sensible sufferers can now go on the internet and book train tickets. The additional cost of transport can sometimes cause an additional strain on sufferers of PAT.

Shortly after the arrival of the envelope sufferers often report an increase in symptoms in their child. Common symptoms in CHD children include blueness, breathlessness and fatigue all of which increase in the weeks leading to the appointment.

It is not uncommon in sufferers whose children have the additional diagnosis of failure to thrive to start force feeding their children with a diet higher in fat, chocolate and rolo yoghurts. As panic sets in the childs consumption of double cream increases proportionately and can sometimes double. Older children may complain but can normally be bribed by playstation games. Do not forget to hide the dance mat and any favourite fruits! PAT sufferers are encouraged not to tell their partners the full cost of the shopping bill during these weeks.

PAT affects parents in different ways – a fortnight before the appointment (or as soon as the symptoms in your child are highlighted) it is not unheard of for parents to change. Appetites can increase (in the form of comfort eating) or decrease but rarely stay the same. Relationships are sometimes strained especially if one parent is more laid back that the other.

It is not uncommon for the slightest thing to cause major family rows especially if his friends or family insist that everything will be OK at the appointment. Things not to say to PAT sufferers include ‘it’s a miracle what they can do these days’ and ‘I don’t know how you cope’.

Other strange behaviour include poor sleep, lack of desire (female PAT sufferers often go through a stage of being petrified of getting pregnant), nightmares of the time your child was in hospital – or most commonly a fear that your childs symptoms have now developed at such an alarming rate you really should have booked a single train ticket to the hospital and will be packing an overnight bag.

Posting on Heartline is a great idea. As anxiety builds so does the consumption of chocolate, wine and cigarettes (if smoked). All of which leads to increased despair.

Once the aforementioned bag is packed expect to be up all night feeling like a condemned person. Your child will be so poorly by this time you will be up checking them every hour anyway!

The morning of the appointment!

Early morning appointments mean up at the crack of dawn – this is fun when you have had no sleep. Other sufferers recommend a cup of strong tea, two paracetamol and a shower in something zingy this seems to work well. As does the wearing of lucky clothing – top, pants, jewellery.

Wake the child up but do not expect it to eat. Feeding a pre appointment child at 5am together with its meds will lead to it throwing up at 8am in the middle of a packed commuter train (hence packing sanitary protection even if not normally required)! Far better to take some bread for them to eat later.

It is acceptable to put little ones in their hospital top the night before – you will be stressed enough without them being!

It is not uncommon to feel sick, nauseous or have an upset stomach the morning of appointment. Feelings of despair and great sadness are normal as are the ‘why the hell did this happen to ________’s/. Some suffers in advanced stages can suffer from shakes and numbness.

One thing that female sufferers should not do is wear make up. Because if the news is good at the appointment PAT makes you inappropriately friendly to medical staff (kissing and hugging can happen). I also recommend a very good deodorant as stress and hospitals can make you very hot and sweaty.

Post-appointment it doesn’t matter how it goes there will be tears – perhaps elation – but expect the next few days to be rough. You have been reminded that there is something wrong with your child and they will be getting away with murder. Travelling to the appointment is tiring for your child and they will be lethargic afterwards – this increase in fatigue will automatically be put down to whether it is their heart.

Once the clinic letter has arrived (which hopefully you can decipher) the symptoms of PAT gradually return from the acute to the chronic. This is normally about the same child as your child steps a bit too far over the line and you start telling them off again!

Until the next time...

My Precious First Born is 21 today!

He's so sweet. And so fat!

Good news.

My middle child (not so much of a child now) picked up his A level results yesterday. He got his grades and is off to Uni in September. Watch out Lancaster!

And Emily is back from Portugal, having had a fabulous time. I'm awaiting photos but I think she's vetting them first!

And more....

These are some of Em's arty shots. A bit of an improvement on my snaps.

More holiday photos...

This is Fred. You were wondering about him weren't you?







And a couple of Emily doing her thing. Which usually means throwing herself off anything remotely high up.