Tuesday, 27 October 2009

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

Saturday, 24 October 2009

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.








Monday, 5 October 2009

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.

Saturday, 26 September 2009

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.

Wednesday, 16 September 2009

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.

Friday, 4 September 2009

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.

Friday, 28 August 2009

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...