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.
Sunday 23 October 2011
Sunday 11 April 2010
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.
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.
Saturday 6 February 2010
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.
Wednesday 13 January 2010
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.
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.
Sunday 3 January 2010
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!
Saturday 2 January 2010
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.
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.
Tuesday 29 December 2009
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.
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.
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