Guest post — Fi gets stabbed for Make a Wish!
We’re delighted to welcome Our Fi back, this time with a special challenge of her own. If you’ve already read this on Facebook, please scroll to the end and sponsor her a couple of quid!
Thanks, Fi xx
Make A Wish
This is a long post but please read it. At the end you can contribute to me being terrified and scarred for life, consider it karmic retribution for all the more cheesy music choices I have inflicted on you.
I have written previously about my friend Lisa and her youngest daughter Robyn. Robyn had a pretty tough start to her life, I’ll let Lisa explain why:
Robyn was diagnosed at 3 weeks old with Severe Aortic Stenosis, she was in heart failure and we came scarily close to losing her. For her first 8 months she was in and out of hospital a fair bit, and had 2 balloon catheters and then open heart surgery to stretch her valve. We then had a wonderful couple of years where she did brilliantly. We then started to notice that she was starting to tire more easily than she had before, and there was a definite difference in her energy levels in comparison with her friends. We had always known that she’d need a valve replacement at some point in the future but her valve was still doing really well. She was sent for an MRI and they discovered that she has Endocardial Fibrolastosis (extensive scarring of the heart muscle). This means her heart doesn’t relax properly and she now has an enlarged left ventricle. In turn this has caused increased pressures in the right side of her heart and led to her developing Pulmonary Hypertension.
When we were first told this news last summer it was with the news that we may have her for another 10-20 years but that was it. Both the new diagnosis’ will lead to heart failure in the end and transplant wasn’t necessarily going to be an option due to the pulmonary hypertension. We were devastated, as you can imagine.
Since then, Great Ormond Street Hospital (GOSH) have been asked to meet with her and give their opinion. She had a cardiac catheter in May to make initial investigations to see if she is suitable for a heart on it’s own, or whether the pulmonary hypertension has already caused too much damage meaning she’d need a heart and lung transplant.
In June 2013 we met with Dr Matthew Fenton at GOSH to discuss Robyn’s catheter results. It came as a shock when he said that he thought she should be put on the transplant list as soon as possible for a heart. We thought going on the list was a little way in the future. A week later we had a meeting with the transplant nurse, without Robyn, who talked us through the whole process. We agreed that as daunting as it all seemed it was definitely the right thing to do for Robyn and gave her the best possible chance. So as long as it was agreed in the joint meeting that Thursday then she would go on to the list that week.
That Thursday came and Dr Fenton called me. Someone in the meeting had suggested an operation to try, in the hope that if successful they could hold off transplant for a while. So on the 14th October Robyn will be having the Ross Procedure (valve replacement), and an EFE Resection at GOSH. They are hoping that if they can remove enough fibrosis from her heart that it will allow it to relax properly and pump more effectively. This in turn they hope will reduce the pressures in her lungs, or even reverse her Pulmonary Hypertension entirely. There are no guarantees that this will work, she may end up on the transplant list soon after anyway. Robyn has previously been a patient of the Brompton, but it’s been decided to go ahead with surgery at GOSH as they have the Berlin Heart etc in case there are complications. It seems right though to give her the chance to get older before she needs transplant. We just have to keep everything crossed for her.
Lisa and her family have made every effort to keep themselves and others positive and motivated. Together with another friend Cath, Lisa set up Hearts & Heads. Lisa explains:
This blog and the idea to raise money for the Stroke Association and The British Heart Foundation came from a chat between us on Facebook. We had discovered that day that a wonderful mutual friend of ours had suffered a stroke earlier in the week. It was a massive shock as she’s in her early 30s. The Stroke Association is a cause close to Cath’s heart anyway (see her page for why), and this made it close to mine too. In addition I have a close affinity with The British Heart Foundation due to my daughter’s heart condition.
So a chance conversation in which we said we both wanted to do something to raise money for these causes started this blog. We can both raise money for our causes, supporting each other, especially in any of the more scary ones we decide to go ahead with!!
I would be that friend in her early 30’s and I was just blown away and feel very honoured to provide even a little bit of inspiration along with their loved ones.
So far the girls have scaled heights to raise money. This is a big deal because they are both pretty scared of heights. Cath also ran 5k and raised money for the Stroke Association last year. Watching them battle their fears to complete an aerial assault course made me simultaneously proud and guilty that I wasn’t up there with them!
Earlier this year there were conversations around a sponsored walk type event. I wanted to do something to help, but with my mobility issues a walk of any length wasn’t really doable. I needed a way to contribute, to raise money while sitting down ideally. I wanted to help so badly and felt more than a little frustrated with my own limitations. My challenge had to involve doing something that meant facing a fear of my own and a sponsored cake eating competition didn’t seem suitably risky enough! A sponsored tattoo seemed the obvious answer… obvious in the way my mind works anyway! Despite all the surgery I have faced over the last few years I am still quite scared of the idea of having a tattoo. I say quite, I mean I am trying not to hyperventilate.
I put the idea to Lisa and Cath and they were right behind me. Normally Heats and Heads raises money for either the Stroke Association or The British Heart Foundation. They also normally ask for small donations in the hope that this will make it easier for people to keep donating to their fundraising efforts. Typically I am doing my challenge a little bit differently.
First of all I am raising money for the Make A Wish CharityThey made Robyn’s dream come true earlier this year, when she, her fabulous big sister Morghan, Lisa and husband Ross were whisked off to Eurodisney and the girls got to be real Disney princesses.
Lisa says, ‘The Make a Wish Foundation allowed both Robyn and her sister Morghan a chance to have some magic in their lives, before coming back and dealing with hospital appointments and operations.’
Make a Wish make dreams come true and for families like Robyn’s it is priceless. So I want to say thank you and help them continue to make the dreams of other families come true. I will do it by marking myself permanently with ink and with that in mind I have set a target of £250 for this challenge – and if we can smash that so much the better.
This is the design I have chosen. It was a tough job. Originally I planned to go for something relating to mindfulness but it seemed really important to find a design that reflected Robyn’s challenge as well as my own personality. A heart wearing headphones just seemed to do the job perfectly. It is booked for Saturday 5th October, the day before Robyn’s 5th birthday. It is in 10 days time and 10 days before Robyn has surgery.
I will be getting inked by Josh at Tenacious Tattoo He is going to work on a couple of redrawn designs, which I can’t wait to see. If you haven’t already, go and like the Adlibbed Facebook page where you will be able to keep up to date with how close we are to our target and hopefully photos of the tattoo as it is done.
So. We haven’t got long. Please sponsor me here and please share this post far and wide and ask other people to sponsor me. Let’s smash this target. Please think of Robyn and her family on the 14th too, say a prayer, send a thought, whatever works for you. Robyn has proved time and again she is a fighter.
And although Robyn has a heart valve replaced on the 14th, she will always potentially need a heart or heart and lung transplant in the future. By joining the Organ Donation Register we can all help others like Robyn continue to fight when we are gone too.
Hangovers and heights for Hearts and Heads
When we did our first challenge, a wall climb, for Hearts and Heads, we reported how our initial fear turned to pure exhilaration and we didn’t want to stop. And the hope was that history would repeat itself this time round.
Well…
What actually happened was that we discovered almost straight away that we’d made a gargantuan miscalculation. You know when Withnail says, “We’ve gone on holiday by mistake”? Well that. And like Withnail and I, we realised that alcohol would soon need to feature in our plans.
It didn’t help that we arrived late – all routes to Sheffield Ice Centre closed, it seemed, by the half marathon – and fuzzy headed after a fantastic night out with the girls. And as I shuffled onto the first section, a thin rope with just another thin rope to hold on to, I was suddenly gripped with terror.
Looking back at Lisa as she stepped off the platform, I saw a look that I had only seen one time before – on the face of a fellow passenger on the sea plane we thought was about to fall out of the sky. And I’m actually not talking abject terror, more of an “Oh bugger” moment.
As we huddled on the first platform, we reminded ourselves that we were doing this for Robyn. If brave, beautiful Robyn gave us the motivation we needed to step off that first platform, she couldn’t quite eliminate the fear – amazing as she is. And we felt that fear pretty much all the way round – as we watched someone in front of us bailing out and as the course climbed inexorably higher meaning that we not only had our fear of heights to deal with but we also had to find some reserves of strength to get up some of the steeper stages. Still, the bird’s eye views of the closing stages of the half marathon reminded us that things could have been a lot worse.
Other things that helped:
1. Robyn. Again 🙂
2. Our team of supporters: Helen, Katie, Lou, Rachel and of course Fiona, who inspired Hearts and Heads. They clapped and cheered each and every time we reached a platform – no mean feat in itself – took some amazing pictures and, crucially, ensured with their presence that we’d see this thing through to the end. We couldn’t lose face after all.
3. Finding out there was a bar nearby.
And so it was that we found ourselves on a platform approximately 40-50 feet above ground wondering exactly how we were going to get down. We had envisaged a controlled abseil – nothing more challenging than we’d done before.
But no.
Apparently, the way to get down is to walk off the platform and free fall until some kind soul puts the brakes on just before you go splat. It hurts and it isn’t elegant – think Bridget Jones and you get the picture.
There was one good thing about landing in the gravel arse first and flailing about like an upturned beetle though – it meant we’d finished the course. Unlike before, we had no urge to repeat the experience and politely declined the opportunity to go round again. But we did get that same sense of achievement and, once we’d downed a couple of emergency shots (thanks Helen!), wellbeing was restored.
Unlike the other charities we support, Heartline is quite small so every penny helps. Your generosity has been phenomenal and you helped us to raise over £250 in just under a week. Thank you so much for helping to make life a little brighter for families dealing with heart conditions xxx
We survived!
Unlike the wall climb, we didn’t quite get over our terror on this one. We’ll post a proper write up when we’ve rested our tired bones but in the meantime, please check out our Facebook page for photos. Thank you!
Guest Post – An acrophobia-themed, ad-libbed top 5
The more observant amongst you may recall that when we did our first challenge, I went a teeny bit over the top with our top 5 climbing songs, which turned into a top 50 and had to be published in instalments? Well this time, we decided to call in an expert – Fiona is not only our lovely friend and inspiration for Hearts and Heads, she’s also a music writer y’know. She has an encyclopaedic knowledge of music and regularly filters out the bland and the banal to bring us Ad Libbed, which is packed full of top quality top 5s, birthday tributes and, sadly, rather too many tributes of another kind recently. Take a look if you haven’t already. So here you have our Aerial Extreme top 5, brought to you by someone who knows what she’s doing.
Thanks Fi!
So Cath and Lisa asked if I could put together a suitable top 5 ahead of their fearless assent to the top of Aerial Extreme this weekend. Naturally I said yes, since I have to keep myself firmly planted on terra firma it seemed like the least I could do.Higher Ground
Reached No 29 in the UK Charts in 1973
You can’t go wrong with a bit of 70s funk whatever the occasion. Apparently Wonder recorded this song in a ‘3 hour burst of creativity’ just before he was involved in a near-fatal accident. He was in a coma for an unspecified amount of time (damn you wiki you let me down!) but moved his fingers when this was played to him. The idea of Hearts and Heads was a fantastic burst of creativity, mostly it seems of coming up with ideas to do stuff that terrifies our dynamic duo….
Higher Love
Steve Winwood
Reached No 13 in the UK Charts in 1986
Steve Winwood, now there was a man with a fabulous voice. Shame he looks and dances like your dad. Also, I only just realised it is Chaka Khan singing too. All those women clutching their chests and swishing their skirts around distracted me.
The directors of this video also directed the Duran Duran video ‘Notorious’ which wiki says is virtually identical, I think very similar is more accurate. (What? There IS a difference). Anyway despite both being nominated for several MTV awards neither won a single springy M which just goes to show that creativity is where as it’s at – rather than replacing one slightly out of synch English man with an American one….
(Your love keeps lifting me) Higher and Higher
Jackie Wilson
Reached No 11 in the UK Charts in 1969
It is actually technically impossible not to cheer up when you hear this song. Cath? Lisa? Height is a good thing see? It is making this particular soul legend sing a slightly speeded up version whilst working a very natty red boiler suit. Actually maybe you could wear red boiler suits on Sunday, it will make it easier to keep track of you both when you are all the way up there… No? OK OK just a thought…
Higher Ground
UB40
Reached No 8 in the UK Charts in 1993
This came out just before I turned 14 at a time I was physically attached to my radio for around 20 out of any 24 hours and this was everywhere. Now generally I prefer my UB40 either singing about manipulated statistics (maybe One in Ten is due a revival?) or getting wasted on crushed grapes. Has anyone tried to sing Red Red Wine of Lips? There are huge swathes of that song I don’t remember being there before – and that is without the consumption of booze…
ANYWAY this one is a different song to the wonderful Wonder erm weecording… OK no I am done really. You could just go and donate via Just Giving you know and just click the video links and ignore me completely…
So four songs on the theme of heights to get Cath and Lisa in the mood to scale tall things and walk on tiny little wires. What can be the number one choice?
Don’t Look Down
Go West
Reached No 13 in the UK Charts in 1985
Well, for two women about to undertake a lofty challenge when neither has a head for heights this seems the most useful piece of advice I can impart. The fact that it comes via two very bouffant and smartly jacketed mid 80s teen pop idols is merely good luck…
Thank you Cath and Lisa for facing the fear and doing it anyway – again! So any obvious choices I missed?
Also ran: Wuthering Heights, I Can See Clearly Now The Rain Has Gone, Foot Of The Mountain, Living On The Edge, River Deep – Mountain High, Then I Got High, High and Dry
Time to face the fear again!
It’s been quite a while since our first joint challenge, nearly a year in fact. We always intended on doing more challenges but you know what it’s like, life gets in the way and before you know it a few months have passed. Now however we’re finally planning our second joint challenge.
As you may remember Cath and I aren’t brilliant with heights, although we did surprise ourselves with our first challenge. This time we are off to Sheffield! Not an obvious choice of location seeing as Cath lives in Berkshire and I live in Hertfordshire, however there is a method to our madness. A group of us who are friends and live all over the country are meeting up in Sheffield for a catch up, which doesn’t happen too often. One of the reasons we’re meeting in Sheffield is that it’s one of the most central places for us all, another is that it’s where Fiona (the person who inspired us to start Hearts and Heads) lives.
So what are we doing this time? We’re doing Sheffield’s Aerial Extreme! This Sunday! This time we may not be alone either in our challenge as a few of our friends have shown an interest in doing it with us, which is fantastic! If not a few will be watching us and cheering us on hopefully.
I personally feel this is a good time to be doing something else, I need to do something as there are other things happening that I can’t do much to control. Robyn in the last few months has had increasing visits to the Brompton as things are starting to slide for her again. We knew it was going to happen but still awful when you are told news other than ‘everything is still great!’. She’s now on medication, we’re waiting for a date for an MRI, and now her next op may be a much bigger one than the already big 8 hour one we knew it was going to be. It’s knocked us a lot, that’s for sure, especially as she still looks so well and throws herself into everything with a smile on her face!
So once again we politely ask you to sponsor us. This time we’re doing it for Heartline. They are a voluntary organisation set up to offer help and support to families of children with heart disorders regardless of how slight or severe the condition may be. It was a book put together by Heartline that we were given when Robyn was first diagnosed, and was a huge help to us. They also run a forum which allowed me (husband not computer savvy) to talk to other parents and feel less alone.
To sponsor us please visit our JustGiving Page.
Thanking you hopefully!
Lisa xxx
From Catherine
Just to echo what Lisa has said, it has been some time since our last challenge. We still talk about what we’re going to do next and we still hold our chosen charities very close to our hearts – we always will. But sometimes life just gets in the way; often it’s work, family, friends, holiday – all the things that should be distracting us if we’re honest! Then there’s the less good stuff, like Robyn’s latest check up at the wonderful Brompton hospital. I’ve only experienced a fraction of the worry and uncertainty that Lisa and her husband are going through now. And my son grew out of his problems; there came a point where we could draw a line under it.
Organisations like Heartline give parents like Lisa and Ross the support they need – from people who know exactly what they are going through. So I’ve decided that on this occasion, I’d like to support Heartline as well. I haven’t abandoned the Stroke Association and I hope to fit in another 5K for them this year. The harsh reality though is that Mum’s situation isn’t going to change – I have a whole lifetime to honour her memory and remind you all to watch your BP and cholesterol levels 😉
Thank you all for your support xx
The Adidas Women’s 5K… and a special anniversary
Where were you on 9/11?
I worked for Pace, the set-top box manufacturer, at the time, so when we realised that this wasn’t going to be about a minor mishap with a Cessna, we all headed down to the very well-equipped demo room to watch events unfold. As we watched, chewed our nails off, gazed in horror as the second tower collapsed, we realised that we were watching history in the making, and life would never be the same again.
Approximately 3,000 people died that day and since then, many more have lost their lives in the resulting conflicts; our world has changed beyond recognition, particularly in the Middle East. It seems a bit strange then to discover that on the 10th anniversary, I will be doing something completely different – raising money for the Stroke Association.
Yet again, I’m reminded that life could be a whole lot worse, that my grief isn’t unique, that there are people who have experienced more pain, horror and fear in a couple of hours than I will experience in a whole lifetime.
It’s humbling.
However, as I pound (wheeze?) my way around Hyde Park on September 11th, I am going to allow myself to also think about Mum: how much I miss her, how much poorer the world is without her and how I’m going to do what I can to help other people survive their strokes.*
Again, I’m asking for just a fiver. And I’ve set my target at £75, which means I’m looking for ~15 sponsors. If you knew my mum, if she taught you or your kids, or if her death just made you think, “sh*t!”, please click on the link and pledge five pounds.
Thank you!
Catherine xx
* Which reminds me: have you checked your blood pressure/cholesterol lately? If you’re over 40, maybe you should – I just did!
…and thank you all
Well, we did it. After quite a build-up, in which we spammed many people’s Facebook newsfeeds asking for sponsorship, support, song titles – did any of you pick up on our stress levels?! – we finally got our backsides up that wall. Those walls in fact – we completed six each.
Was it as pant-pooingly terrifying as we had anticipated? Well, we’ve deliberated over whether to tell you the truth about this but the fact is, no. We had a fantastically calm, level-headed instructor, Rich, who had us summed up from the moment he saw us and realised we were there to climb walls ourselves, not to chauffeur our wall-climbing kids.
“Have I told you why we’re here?” I chirped.
“Is it for charity?” he asked, without batting an eyelid.
“Er yes, is it that obvious?” said I.
To give him his due, he did appear to show genuine interest when I proceeded to tell him about our charities and why we were supporting them. He didn’t let me procrastinate for too long though and was soon kitting us out with harnesses and talking us through the safety drill. And for me, the worst was already over – we weren’t required to wear helmets and I was therefore spared the ignominy of waiting while they searched the premises nay, nearest town for a helmet large enough to fit my oversized bonce (we call it the ‘Osborn head’; it causes much amusement as we take turns to rip Christmas cracker hats with our heads but otherwise, serves no real purpose).
Unfairly perhaps, I went first (when things got really tricky, I turned to Lisa and said, “Your turn to go first!”) and I have to say, it is not the most natural feeling when you’re clinging to a wall with your hands and feet and your centre of gravity (i.e. your backside) is somewhere behind you, trying to pull you back to earth the whole time. The first thing you have to do is straighten up and the second thing to do is discover which of the ‘lumps’ you can get a proper grip on – some have lovely gaps down the back for your fingers and others are about as grippable as a very smooth, tiny pebble that has been greased with lard.
So having done this, Rich told me to let go of the wall so that I could experience for myself that glorious feeling of being saved by my anchorman… and the horror of seeing the effect of my weight on that knot he had tied ever so quickly. FYI, the knot is self-tightening, not loosening, but that subtle difference was lost on me as I saw the rope snake down through the knot. This seemed like a good time to ask him if he really knew what he was doing but before I had the chance, he was telling me to “go for it” and I did. I raced up that wall, swearing as I went, thinking that the sooner I got up there, the sooner I’d get down again. “Wow!” said Alex. Indeed: we had all suspected that I would need extra oxygen at six feet.
Before I knew it, I was down – shaking but alive – and it was Lisa’s turn. Standing at the bottom, watching someone else climb that wall, made me realise just what we’ve both achieved. In case we haven’t mentioned it several times before, we are both terrified of heights and yet, here we were climbing to unnatural heights and actually enjoying it!
A couple of walls later and Rich decided to up the ante: “This time, you’re only allowed to use the green holds,” he said. For me, this meant I needed to take longer to plan my route, stretch further and, occasionally, jump and hope. For Lisa, who is shorter than me, it added a whole new dimension and I stood, open-mouthed, as Rich told her to “hop from your left foot to your right”, “turn 90 degrees”, “reach your right arm over your left shoulder” – you get the picture, Lisa was awesome!
After six walls each, our time was up. How did we feel? High as kites! We’d built up the challenge so much beforehand that it would have been easy for the day itself to disappoint but it far exceeded our expectations and we came away feeling exhilarated… and a little bit achy. We’re now planning challenges 2 and 3 but doing so knowing that we will achieve them!
At risk of turning this into an Oscar speech, a few thanks are due: the unflappable Rich, and everyone at Craggy Island – a certain climbing centre in Berkshire could learn some customer service tips from these people. Alex, Daniel and Elena, Morghan and Robyn (and Ross, who would have if he could have!) and Lisa’s sister-in-law, Janina, and her lovely family, for coming to support us. And especially YOU lovely people for sponsoring us, coming up with motivational song titles, and supporting us via Facebook on the day.
Not long now…………
………..till our first challenge!! Less than 24 hours in fact! I’m all excited about it then remember I actually have to climb up a huge great wall and then the jitters set in!! But my Robyn has been through way scarier things in her little lifetime, so of course I can do this.
The gorgeous Joel. Lives with Aortic Stenosis, nearly lost his life 3 times in his first 9 weeks.
I’m not just doing this for Robyn though, it’s for all the other CHD children and adults I know, those still here fighting and those who have sadly passed on. Here’s to Joel, Hazel, Louis, Lewis, Tanesha, George, Lucy, Hope, Samuel, Thea, Sarah, Zoe, Anthony and so many more. I’ll also be thinking of Cath’s Mum, Fiona, Tia and many more who are living with the effects of a stroke, or who lost their lives to one. This time tomorrow you should be able to see photos of us climbing up that wall, and be able to read about how much our legs and arms are aching from getting us to the top!
The beautiful Zoe Chambers, who lost her fight against CHD. Never forgotten x
- Hazel Hunt, born with TGA. Now raises awareness of CHD after setting up http://www.congenital-heart-defects.co.uk
Climbing Songs Part 5 – The Top 5!
5. Radiohead – High and Dry – Fiona H
The second of two Radiohead songs here. Excellent choice, “High and Dry” is exactly what I hope I’ll be on Sunday as it means that Sure, indeed, didn’t let me down.
Climbing Songs Part 4 – Countdown from 10-6
10. Kim Wilde – You Keep Me Hanging On – Fiona H
“Is that a QI klaxon I hear?” typed Fiona. Of course not, Kim is cool! Now if you’d suggested this version…
Hearts and Heads 