Hiding my light

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Hiding my light

So 15 October was the day when people all over the world lit candles to create a wave of light – it’s part of baby and pregnancy loss awareness week. Obviously this is a cause close to my heart, an incredibly worthy cause and one that needs more people to talk about it. However, I didn’t join the wave, no candles were deliberately lit for this cause in my house, and here’s why.

In the last 6 months (yes our first miscarriage was 6 months ago in November) the miscarriages have defined who I am. How I feel. What people say to and around me. My reaction to my friends, to TV, to songs, to films. My relationship with my husband. My friendships. My health. There have been some positive lessons learned – friendships have been cemented by the love, support and normality that’s surrounded us. Me and my husband know for certain we can weather anything – because we’ve been through more in our 2 year marriage that most couples cope with in a decade. I know for certain I’m ready to be a mother – because I’ve grieved the loss of my unborn children and everything they could have been. As I’ve talked about previously, we’ve also learned some hard lessons – we’ve been disappointed by people. But it’s made us tougher, more resilient, better at saying no to those people.

My point is, the last 6 months have either been spent pregnant or grieving. That’s not to say the grieving has stopped. I still have my moments, and I’ll never forget our pain. But on Saturday 15 October, the weekend before my birthday, I wanted a weekend about me. The Hilary I used to be – laughing til I cry. Acting like a wally. Enjoying all the cheesiness and tackiness life has to offer. So I planned a birthday day out to Dreamland in Margate – the birthplace of tack and cheesiness. I went on fairground rides with friends all day, drank prosecco, came home for a takeaway with friends. Played Cards Against Humanity. It felt really nice. It did me and my husband the world of good. We felt like, even if just for 24 hours, we were back in the game. Part of the gang again – there were no kid gloves or eggshells allowed.

After an extra couple of days off and some brilliant time with my husband where he spoiled me, I feel genuinely relaxed for the first time in a very long time. I’ve got some kind of peace. I’ve been reading the ‘7 days, 7 stories’ Tommy’s stories that appeared on my newsfeed and acknowledging that this experience is happening around the world and talking about it and addressing the pain is a positive move. One of my very favourite couples in the world announced their pregnancy and while it still hurt that the universe had been so unfair to us, that was quickly overshadowed with genuine joy. Other people deserve happiness and a family. Resenting the people we love will only add to the things we’ve lost. It’s a pointless exercise that will eat away at us and prevent our (and their) happiness.

We now occasionally let a ‘when’ creep into conversations about our future family, not just ‘ifs’. It doesn’t mean we’ve forgotten. It doesn’t mean it’ll change anything when the time comes again – we still need to be cynical and prepared for the worst and we’re still healing.

But for the first time in half a year, we feel like us again. Defined by the things and the people we love, not by our pain.

Celebrating soulmates

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Celebrating soulmates

It’s a popular notion that a soulmate has to be something romantic. And often it is, but I don’t think that’s always the case. Additionally, I don’t think we have just one soulmate, I think we have a few.

The Ancient Greeks got this, I reckon that’s why they had 6 words for love. It’s ‘philia’ or deep friendship that I’m talking about here.philiaWhat is a soulmate?

For me, a soulmate, for whom you feel ‘philia’, is someone who just gets you. With them there’s no judgement.

Wherever you are with them it’s a safe haven – what’s said to a soulmate stays with a soulmate.

You can rant and rave your heart out about your colleagues/family/in-laws and they know you just need to rant. They don’t judge you or call you names for it, they let you vent. You can act weird and while they might call you out on it, they accept your weirdness (some of them might even out-weird you).

Their advice is honest, frank and fair. It isn’t always what you want to hear but it doesn’t hurt to hear it. They deliver it with compassion, understanding and often a good dollop of humour.

Even on the days when you feel like nothing can make things better,

your time with them is like the tightest bear hug.

You leave feeling like a weight has lifted, life makes more sense and you can face another day.

My soulmates

For me, my husband is absolutely one of my soulmates but that’s not based on our romantic connection, it’s based on our friendship and mutual respect and understanding. He tells me when I’m headed down the wrong path. He backs me up when I’ve been wronged and helps me respond with dignity (instead of like a crazy banshee); and he supports my dreams and aspirations. With him,

I’ve never felt small, or insignificant, or worthless. I’ve just felt loved.

These are the reasons why he’s my soulmate. (Throw in the fact that I fancy the pants off him, that I love him beyond ‘philia’, and that he’s the only person I want to see when I wake up and when I fall asleep; et voila, one husband!)

Read through the things I’ve said about my husband above (before the husband-specific stuff)  –  I bet the people who spring to mind aren’t necessarily romantic partners or interests.

This year has really highlighted to me who my soulmates are. They’re people whom I feel completely comfortable around. People who have never been the root of any anxiety attack or worry. People who tell me it like it is, but with kindness; leaving me safe in the knowledge that they’re not going away to talk about me or hurt me. They’ve watched me cry, listened, understood when my pain has made me unreasonable but gently steered me away from saying anything to hurt my loved ones or myself. They’ve talked me through my options and helped me heal myself.

It’s like going to the GP but without the 10 minute appointment limit and cold stethoscope.

Instead they’ve just helped me uncover the answers I already had.

I guess my point is this – when you’re hurting, or confused, or need a sounding board; remember the incredible resource you have in your soulmates. Don’t take for granted how valuable they are and don’t think that just because you’re in a long term relationship, you can only rely on your partner. If you’re fortunate enough to have an awesome partner AND one or two incredible soulmates, you’ve got all you need.

The things we have learned…

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The things we have learned…

 

I don’t want this blog to become solely about our miscarriages and subsequent journey to parenthood (fingers crossed, touch wood, wish on a star, do some kind of baby version of a rain dance). But for now, that’s kind of our life.

So in a slightly more philosophical (and hopefully less sad vein) here are a few things I’ve learned from our journey so far

You’re not alone

The pain and the sadness and the fact that, at the end of the day, it’s your body in pain and your mouth they’re putting tablets in, and your veins they’re sticking needles in; can mean you feel incredibly lonely. Even the best partners in the world (and mine is awesome) can’t take that Eeyore style black cloud of isolation from you completely. I just want to tell you that you’re not on your own.

I was overwhelmed by the messages I received after we published our first heartbreaking post. Women I haven’t spoken to in up to 13 years were messaging me to let me know they’d been through it. It was like a post-battle debrief where we shared our war stories, talked about our wounds and scars, and gave each other hope to get back out there and keep fighting. These women are warriors, and my new heroes. A great blog to read is Charlie O’Brien’s, who is now a parent but had her own challenges getting there.

People will disappoint you…

Sadly, some people in your life will disappoint you. They’ll ask tactless and painful questions, throw clichés at you, ignore that anything has happened or (worst of all) try to be part of your pain, never understanding that you’re not suffering it willingly and it’s not theirs to ‘own’. It’s easy to lose your rag but remember that however it comes out, very few (if any) of these people intend to hurt you. Their words are well intended and come from kind places. Nonetheless, if they get too much, take a break and a deep breath and do what’s right for you and your partner.

…But they’ll surprise you too

The smallest and silliest things will pick you up on your worst days. My aunt, uncle and cousins sent a giant bag of M&S chocolate which arrived a day or so after getting back from holiday (and crashing even further back down to earth). The chocolate itself (while yummy) wasn’t a magic cure, but the reminder that so many friends and family were thinking of us and doing what they could to care for us made a whole world of difference.

Give yourself a break

You’ll have a string of good days and then, out of nowhere, you’ll have a day when the tears/anger return with a vengeance. From what I gather, this is normal. Your brain will take time to process the loss you’ve suffered and while healing does begin relatively quickly, it’s not an immediate outcome. In the meantime, don’t be too hard on yourself. If, like me, you’re used to giving 110% in everything you do, drop down to 80% instead. Everyone else will still think you’re doing a great job, and you’ll give yourself a bit more energy and thinking space.

You can still be you

Guilt is a terrible thing. It eats away at us at the worst times. My inner monologue over the last couple of months is not a show I’d buy tickets to – it goes along the lines of “It’s my fault”, “I’m broken”, “He should leave me”, “I just laughed – what must people think?”, “I got drunk last night. I don’t deserve to be a parent anyway”.

Unfortunately there isn’t an off switch for this guilt, but you can try to counter it with more positive thoughts and behaviours. Getting back to ‘normal’ life is not only allowed, it’s encouraged. Go out with your friends, laugh with your partner, smile when your pet does something weird and funny. And Stop. Feeling. Guilty. Like so many things, your loss was out of your control. You won’t forget it but you can move on – worrying about the whys and wherefores won’t do anything except cause more hurt and distress at this point.

Don’t put life on hold

My biggest challenge as we move into what I’ve affectionately named ‘phase two’ of our recovery, is living our life without planning around a hypothetical pregnancy. The thing is, whether this month, next month, in a year or in two; the world knows we’re ‘trying’ now (urrrgh, hate that phrase). That means that every night out when I don’t drink, every event we leave early because I’m tired, every baggy top I wear (!) starts the rumour mill. And it reflects on your own feelings too – “What to do for that birthday/Christmas/catch up with friends?” “Maybe we shouldn’t plan the all day drinks – what if we’re pregnant?” “Let’s not book that holiday, I might be pregnant”.

You know what? That’s an impossible way to live. Do what you and your partner want to do. Book your holidays (that’s what insurance is for), plan your nights out (you can always change / move plans) and live for the now. Who knows what’s happening tomorrow.

Fight the good fight

And finally, fight the right fight for you. For us, after ‘only’ two losses, that’s meant giving up battling healthcare professionals, and instead using our energy to take care of ourselves. For others, regardless of their experience, fighting is what helps them survive it all. You have to do what you both feel is right. Don’t be led by doctors who tell you no, or by family who push you to keep battling on. Fall back on your experience, your feelings as a couple, and do what you need to heal and find your smiles again.

In the meantime, here’s a song that’s struck a chord with me in the last couple of months (click on the pic below).

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Love and laughter

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Love and laughter

So it’s been three weeks since our awful hospital stay. 23 days since the ultrasound room, 21 days since the day of pain and loss. 24 days since I last remember feeling genuinely happy and hopeful. Since the weekend that broke our hearts and stole our hopes and dreams. During that three weeks there have been a lot of tears, a lot of ‘what if’s, and a lot of politely smiling while people fumble through inappropriate question asking and platitudes. But in the last few days, something miraculous happened.

Drying the tears

You see, today, it’s been exactly 5 days since I last cried. And more than that, over the most recent weekend, me and my husband laughed, we took the mickey out of each other, and we felt…..’normal’. Neither of us is naive, we know that there will still be bad days – the next pregnancy announcement amongst our friends and family, the due dates of our lost babies, and (when it’s time) the next pregnancy for us. But for now, we’re starting to heal.

A slow process

Don’t get me wrong, the happy you might see for a day, an hour or a minute is not as it used to be. There’s still a permanent dull ache in my heart that doesn’t go away. For my husband, he’s angry that it can’t just happen for us as easily as it seems to for our friends and family. No matter what’s in our future, we’ve both fundamentally changed and nothing will erase these experiences from our hearts and minds.

Every single conversation brings up a momentary ‘what if’ that hurts. Some mornings I feel like my very biological make-up has changed and I’m now made of lead or stone. Everything is just so heavy. There are random moments – in the office, at home, with friends – when an emotional wave washes over me out of nowhere, and it feels like my heart physically sinks into my boots.

I still ask questions out of the blue of my husband “We’re going to be OK aren’t we?” or “I just want us to have a baby – what if we can’t?”. I’m the woman out of comedy sketches, desperate to hold my own little one. Only it’s not so funny anymore. But this sadness doesn’t keep me in bed anymore. It doesn’t immediately generate tears. I acknowledge the ache and the heaviness, and force myself up and out into the world.

Take care of you

I just wanted people to know that it does get better. Life going on feels like the worst thing in the world when you’re in that ultrasound room, receiving that heart shattering news. You just want everything to stop – the whole world to acknowledge the immense pain you’re suddenly feeling. But actually, when the world keeps turning and you realise you have a life to return to, it’s a positive thing. It’s healthy, and necessary, and like it or not, just what you need.

Just be careful with yourself. You’re understandably fragile and no matter how many good days you have (and you will), you still need to listen to your body and your heart. If you feel like telling someone at work what’s happened so that they stop asking about your ‘lovely tan and holiday’, do it. Their awkwardness is their problem. You lost a child. If you get home from work and need to go straight to sleep because just ‘being ‘has exhausted you, curl up and do just that. If you have one too many glasses of wine with your best friends and suddenly realise your miscarriage is all you’ve rambled on about for an hour, don’t feel guilty. Your friends love you and understand that they have a vital role in your recovery.

You’re grieving, don’t let anyone tell you otherwise. You’ve suffered a huge physical and emotional loss. Take care of yourself and your partner and you’ll suddenly realise you laughed today. And it’ll get better.

 

Heartbeats and hopes

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Heartbeats and hopes

“We’re very sorry but we can’t find a heartbeat”, 9 words that will ironically, stop your own heart for the briefest of moments. I can say this with certainty, because it’s happened to us twice now. In only four short months we’ve lost two babies. And yes, I’m aware that biologically they weren’t babies – one was no more than a cluster of cells, the other was a ‘foetus’ – the ugliest of words to describe something so incredibly beautiful.

But to us they were our children, our first children, and now the children we’ll never get to name, to tease, to watch grow up, to tell off and to lose sleep over. From now onwards, my medical notes will say ‘Two pregnancies, no babies’. They’re the reason we’ll never get excited about a future pregnancy, and the explanation behind the inherent change to our naturally hopeful and happy personalities to cautious, cynical and bitter ones instead.

I’ve ummed and aahed over whether to share this publicly – it’s incredibly personal, and laying our hearts and personal pain out there for all to read is a big decision. But as a couple who has now suffered through the pain of 2 miscarriages and found that the only balm are the testimonies and case studies of others who’ve felt the same, it seemed important to share our story.

Number one

The first time was early – some bleeding at home, a fruitless trip to A&E where I was told to go home and see what happened, an early scan to confirm my body had done its job by itself and got rid of our first baby. We were sad, we woke up in the night and held each other but we bounced back – not everyone knew. We could survive the ignorant and unwitting enquiries about when we’d have a family because we still believed we would.

Number two

The pain of number two is still raw – it was only a week or two ago, but the situation was horrendous. Following our first experience, we paid for an early private scan at 8 weeks. All was good, the heartbeat was strong – we got photos of our little blob and told only some immediate family and very close friends. The consultant assured us that after hearing a heartbeat at 8 weeks, the risk of miscarriage was only 2%. We should try to stop worrying. And we did, we let the hope creep back in. We were still careful but we booked our 12 week scan, I attended my first midwife appointment.

The 12 week scan rolled around. Nervous and desperate for the reassurance we both needed, we walked into the room to meet our sonographer. After muttering under his breath that “It’s too small” “Hang on, no, very small”, I knew something was wrong. “I’m very sorry, there’s no heartbeat” he said with very little sympathy or emotion. The screen showed measurements at 8 weeks 3 days – only 3 days after our first scan. Neither of us spoke, made a noise, cried. We just stared and nodded. So inherently British, I’m even pretty sure I said thank you. He called a colleague to confirm, took us to the Early Pregnancy Unit (EPU) and a kind nurse took us to the quiet room to discuss our options.

Unwanted options

None of the options was ‘preferable’ – I’m not a clinician so I won’t go into details, but they’re essentially surgery, tablets (at hospital or home), or let nature take her course. Due to fly on a much needed holiday the next day, and given that in four weeks my body had failed to do its job so far, we ruled out the natural option. Our fragile hearts and minds just couldn’t sit around, go to work, smile and get on with life knowing we were waiting for the pain and an end to it all. I’ve never had surgery, never had an anaesthetic so we ruled that out too. Tablets it was, and taking the course in hospital throughout a day seemed the most efficient and safe way to do it. We rang our friends, postponed our holiday and told them to go on without us. We rebooked flights for a couple of days later hoping all went to plan.

I’m not sharing everything here, but it was a day (and overnight stay) filled with pain, tears and blood. A day I’m certain I couldn’t have survived without my husband to hold my hands as contractions took over, to wipe my tears, kiss my forehead and tell me I was amazing, and he was so proud of me. And my mum, who spent the entire day rubbing my back, hugging me and telling me it was OK to be angry, to sob, and insisting I ask for pain relief when I was trying to be brave. Both were struggling to watch me in so much physical and emotional pain and obviously, my husband was experiencing the same loss I was; but between them they provided the strength and love I needed.

Looking forward

This isn’t an advice post – if you’re going through this right now, I am so so sorry for you. Every experience will be different so I’m no expert – just don’t do it alone, accept help and hugs and don’t try to be brave. You need to grieve and feel everything  to move on when you’re ready.

For us, we’re stronger than ever. Our silver lining is that this didn’t tear us apart, it made us more sure of our love and partnership. The nights when I’ve woken him up sobbing he hasn’t shushed me and made me go back to sleep. He’s hugged me, turned the lamp on and put Family Guy on the TV because he knows I need distraction, and that sleep isn’t coming.

We haven’t lost all hope – two miscarriages are sadly quite common and the NHS don’t investigate why until a couple has 3 miscarriages. We’re hoping we don’t reach that number, but for now, ours is not to reason why. We need to heal. We still hope to add an extra number to our little family but if we don’t, we know we’ll survive.

When we’re ready we’ll try again but I need those we love to understand that it won’t be congratulations and excitement – we don’t need advice to stay positive because frankly, it ain’t gonna happen. We are going to need to stay cautious and cynical. It’s the only way we’ll survive this again. Please accept that and leave us be until we can let ourselves believe it’s really going to happen.

Without wanting to sound like a really miserable awards ceremony, thank you to everyone who sent messages, personal stories to give us hope, and flowers, chocolates, prayers and love. To our friends we (eventually) joined on holiday, thank you for reminding us it’s OK to smile – we didn’t need to sit at home wearing black and wondering where we went wrong. Your love, easy company and laughter has been a huge part of our initial recovery and we’re massively grateful for all of you.

There are no words to thank my mum – thank you isn’t big enough. I love you – it was an awful experience but I’m incredibly glad I had you by my side.

To my husband, I’m sorry we haven’t got our happy ending. I’m sorry our short marriage so far has been so incredibly difficult. Thank you for being so brave and strong, for suffering with me and talking and listening. Thank you for opening up, for taking care of me, and letting me take care of you. We’ll get there, and if we don’t, we will always have each other.

Aspiring to bigger things than a piece of paper

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Aspiring to bigger things than a piece of paper

For those who haven’t spotted it on their Facebook feed or via online news sites, the A4 challenge is a new trend in China which encourages women to slim down until their waist fits within the width of a 21cm-wide piece of A4 paper. So. Weird.

While this doesn’t seem to have taken off outside of Asia yet, I have no doubt that it will. And that’s what makes me sad.

Why are young women’s aspirations no bigger than a sheet of A4 paper (literally)? Aspiring to be 21cm wide is not a goal, it’s a health concern. Our aspirations should be to cure cancer, to design the next architectural masterpiece, to travel the world. It got me thinking about the role models and media onslaught that young girls are exposed to every day. And sadly, helped me to understand why a tiny waist might be considered ‘an achievement’.

Naked Kim and friends

I refuse to reshare that picture of Kim Kardashian. Suffice to say that if that’s what young women perceive as beautiful, it’s no wonder they’re considering crash diets, crazy ‘at home’ lip jobs and pieces of paper as waist width measurements.

While I’m sure a lot of young women are savvy enough to realise that there’s very little that’s natural about Kim K, it’s nonetheless a concern that every time she posts a photo of herself in the buff, it goes global. Whether you admire her or hate her, there’s nothing to kick your self-worth in the teeth when you’re having a bad day like a glance at a stretchmark-less, made-up, teeth-whitened celebrity who looks flawless in the nude.

We’re quite good in the UK at highlighting our talented women (and natural beauties) – Holly Willoughby, Jodi Ann Bickley, Fearne Cotton and Dawn O’Porter to mention a few of my favourites. All three are beautiful women with different body shapes, unafraid to share ‘real’ photographs of themselves and in addition, (and importantly), intelligent, driven, funny, ambitious, creative and principled.

I can’t imagine a single one of them would even consider the A4 challenge. Because it’s ridiculous. But sadly, for a lot of young women, these celebs don’t get a look in when compared with looks-focussed YouTubers and global celebs famous for simply being famous. And with all that personal-trained, photoshopped, made-up -ness to look at; it’s all too easy for bizarre food and fitness crazes to sneak in under the guise of the solution to our body and self confidence problems.

Call to action

So here’s my request, think carefully before trying a ridiculous fad diet or unrealistic fitness craze. First and foremost because you should take care of yourself – that means getting fit and eating and living well in the right ways.

Secondly,  bear in mind that for every one of us, there’s a friend, a sister, or someone we don’t even know who might see our content as endorsement that these ridiculous trends are a good idea.

And finally, think carefully about who you follow on social media (famous or otherwise) – if they’re not making you smile, encouraging you to live well, to be kind, and to be healthy; perhaps it’s time for a fan/follower cull. And to be honest that goes for real life too!

Let’s raise the bar – no more silly size challenges, just good old fashioned encouragement, pride and sisterhood.

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Joining it up – health, social and benefits support

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Joining it up – health, social and benefits support

So what I’m about to say will not come as a surprise to anyone, but coordinating care and finances for an injured or vulnerable loved one is an absolute bloody nightmare.

No one party speaks to another, except you, if you’re the lucky so-and-so coordinating it. “It can’t be that bad?!” I hear you cry. It is, I assure you.

In my recent and ongoing experience, there are a couple of public bodies which you’ll need to deal with if your loved one has suffered a health set-back or injury. In my dad’s case, these are the Department of Work and Pensions (DWP), the Office of the Public Guardian (OPG), and Her Majesty’s Revenue and Customs (HMRC).

Coordinated data protection

Understandably, one can’t just call up a government agency and expect to be told absolutely everything you want to know about another person. Some validation is required. This makes absolute sense to me – it’s important that only those authorised to discuss matters of benefits, taxes, health and social care, can do so.

However, I would like to know why these agencies can’t co-ordinate with one another in order to prevent the countless phone calls, explanatory letters and frustrated swearing sessions that inevitably ensue from repeating the same story until you want to vomit.

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For example, in order to coordinate my dad’s benefit claims, I had to write to the DWP to become his appointee – meaning that DWP staff can liaise with me so that I can manage his claim on his behalf. This I duly did and my appointee-ship was granted. Hoorah! I can discuss benefits to my heart’s content with them (please read with sarcastic tone).

Next up, the HMRC, who, (despite sending a letter addressed to my dad, to my personal home address), refused to discuss him with me until I sent a letter of authority from my dad permitting them to talk to me. When I queried how, if they had no record of me as appointee, they had my address on his file, they couldn’t answer except to say that ‘it must be on record somewhere’. Clearly data is being shared. Either own up to your boo-boo, or simplify it and let my appointee-ship cover all relevant government bodies.

As another example, we submitted Power of Attorney for my dad’s health and welfare. This in itself is a monster task but we did it, and, (five months later) it was granted. Within days I had a letter from the DWP stating that the OPG had notified them of a Power of Attorney in my name for my dad, and could I please send a solicitor-ratified copy as proof. Proof?! The bloody office who granted it just told you it’s official, can’t they send a bloody copy?!

A full time job

In summary, it would be awesome if the government had one central office for anyone needing to obtain appointee status for a loved one. That appointee status could be requested, granted and accessed by all government agencies saving countless frustrating hours of discussion.

This is just the tip of the iceberg though, there are also issues with securing funding for his accommodation (see my earlier post about finding said accommodation in the first place), with securing funding (from the same local authority) for engagement activities specific to his condition, with accessing banking, managing tax returns that were due during his hospitalised recovery, and more. It’s a full time job for a specialist secretary, and instead my family is handling it around our full time jobs, our families, and our lives. Don’t get me wrong, I don’t resent him for it and I’ll fight as hard as I need to, to make sure he gets everything he deserves and needs to be comfortable and happy.

It does make me wonder though, what happens to the people without families? Who fights for them?

One of the answers is, the third sector. With that in mind, I’m finishing with a personal plea. My brother is running the Virgin Money London Marathon this April for Headway, a charity which provides much-needed support to brain injury survivors and their families. They’re currently battling for funding so my dad can attend a regular activity group with other people in a similar situation. If you have a spare £5, it would be going to a really worthy cause: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=DaveAndHeadway&faId=605137&isTeam=false

Dave marathon