Hugo’s Legacy is helping other babies

For Hugo’s funeral we asked for floral tributes from close family only, with donations to our chosen charities: First Touch and Ronald McDonald House Tooting, from everyone else.

Flowers are always beautiful, but of course they have a limited life. Donations of money, in contrast, have the potential to help many other families, just as we had been helped by these wonderful charities during Hugo’s life.

Hugo

We were astounded by the generosity of our friends and family, raising £1000 which was split equally between the two causes.

Having the obsession common to many bereaved parents to make sure Hugo is never forgotten we ideally wanted the money donated to First Touch (the charity for the sick and premature babies at St George’s Hospital, where Hugo spent his life) to buy a piece of equipment, something tangible that we could say is Hugo’s.

At first, we thought the money wasn’t enough to buy a piece of equipment outright, so we were  going to put the money towards the refurbishment of the quiet room; we had spent a lot of time in there during the worst times, and it is in dire need of a bit of TLC!

We then received the news that Hugo’s money could buy an oximeter outright. An oximeter is a non-invasive way of measuring oxygen levels in the blood – one of the many vital observations sick and premature babies regularly need to monitor their progress. If you have had a sick or premature baby in hospital, or been an inpatient in hospital yourself you will appreciate how many observations and interventions the patient has over the course of a day, so anything that makes the process easier is invaluable.

‘Hugo’s’ oximeter.
As one of the lovely First Touch ladies observed, it is small but like Hugo, very important!

First Touch asked us what wording we would like on the plaque that was going to be placed on the oximeter. We asked that the nickname given to Hugo by his nurses – ‘The Boss’ – be added to reflect how much this tiny boy meant to everyone. ‘Bright in Mind and Spirit’ is what Hugo’s name means, and my feisty baby he really lived up to it, so that was added too.

The charity was kind enough to send some photos of the oximeter and plaque so I could share them with everyone so you know what your generous donations have bought, and how it is helping other babies like Hugo.

The plaque on the reverse of the oximeter

Hugo’s daddy and I are so proud that other babies are being helped in our little boy’s name.

It is also a way of showing how everyone’s support helps First Touch help sick and premature babies and their families. If you are looking for a good cause to support in 2015, please do consider First Touch. While the unit is based at St George’s Hospital, south London, they look after babies from all over the country like my Hugo, as well as little ones from the local area.

The Kindness of Strangers: A Spotlight on Charity

Without the kindness of strangers, the heartbreak and challenges this year has presented me with would have felt a lot worse.

Without the kindness of strangers, my partner and I would have been unable to have stayed in a room, free of charge just minutes away from our baby who was fighting for his life in a neonatal unit.

The kindness of strangers helped my son receive treatment with state-of-the-art medical technology, and his parents small comforts like cups of tea and a sofa to sit on.

The kindness of strangers (as well as my family and friends) is helping me survive the worst time of my life.

Charity giving has received a high profile during the past couple of weeks due to the ALS ice bucket challenge. Your social media feeds have probably been full of folk tipping buckets of ice water over their heads, just as mine has.

Amyotrophic lateral sclerosis, to give ALS its full name, or motor neurone disease (MND) as it is better known in the UK is a progressive neurodegenerative disease. Put simply, it affects the messages that the brain sends to the spinal cord and then to the muscles in the body. Many patients eventually become paralysed, and the disease eventually leads to their death.

Raising awareness and invaluable funds towards finding a cure for this debilitating disease through the ice bucket challenge is a great idea, which has gone viral across all forms of social media. The social media craze has given ALS/MND a profile that arguably money could not buy with a traditional marketing campaign.

The trouble is, a survey has revealed that fewer than half of the people in this country who have participated in the challenge have donated money to an ALS charity. Just more than half did not know what cause the challenge was in aid of. Worse, a third of the survey’s respondents said they did the challenge just to get attention on social media, and others said they did it because of peer pressure.

The results of that survey left me feeling rather irked and exasperated. It confirmed my cynical head’s concerns about the challenge.

The positive side is that the ALS charity has received a record £57 million in donations since the end of July (an increase of some £55 million compared to the same period last year).

Another positive is that a number of people have chosen to donate to another charity, one that has personal meaning to them. People in need will benefit from funds donated to any charity, and that is a good thing.

For that reason, I was disappointed by the reaction to Macmillan’s adoption of the ice bucket challenge, in particular those who had rather hysterically claimed they would no longer donate any money to the cancer charity as a result. I am uncomfortable with that charity’s decision to pay for a Google Ad to promote their campaign, but that is another matter, as is whether or not they ‘hijacked’ it.

For me, the real point of not just the ice bucket challenge, but of life in general is giving.

Money is the most useful thing to give to charities. It’s how they fund their work – they would not be able to exist and help people (or animals) in need otherwise.

Donations of small change, as well as sponsored activities like runs, walks, and jumping out of planes helped fund our room in the Ronald McDonald House. Such donations also help First Touch provide equipment for sick and premature babies, and small comforts for their parents.

Random acts of kindness, such as buying a coffee for the person in front of you in the queue, or buying a random stranger some flowers are examples of small gestures that can make someone’s day.

Giving doesn’t always have to be about money, however. Giving can also be about kindness. Kindness, compassion and generosity towards others. Not judging.

Giving a kind word, or lending a non-judgmental ear to someone who is going through a tough time. Friends and family have done that for me in spades, and that’s wonderful. But they’re supposed to. It doesn’t mean I take them for granted – it’s part of the reciprocal relationship.

Kindness from strangers can often be more cherished by the recipient, because the stranger doesn’t have to be kind.

Virtual hugs, compliments about Hugo, my beautiful baby boy, and general kindness from complete strangers on social media have provided a small comfort to me in my grief.

Kind is something I always try to be to everyone I know, and to those I don’t know, too. It usually doesn’t take much to be kind, and there is usually no excuse to not be kind.

Writing a kind comment to someone, especially if they are feeling down takes just seconds. I know from experience that even a simple four-lettered word (a kind one!) – ‘hugs’ – can make someone feel like they are not alone in the world.

In a world that is full of such sadness and sorrow, the value of kindness cannot be overrated. Whether that kindness is through a financial donation to a charity, a random act of kindness or generosity of spirit towards someone experiencing a difficult time, it can all make a difference to someone’s life.

Psychological research has suggested any acts of kindness can also enhance your personal happiness. Being kind to strangers can give you a warm glow.

A warm glow that will help thaw the chill of the ice challenge – provided you donate some money to charity, of course.

Disclosure: I have not done the ice bucket challenge – and no one has nominated me. Would I do it if they had? I’m not sure. It feels like jumping on a bandwagon. Like others who have declined the challenge, I don’t feel like I need to post a video to Facebook to donate to charity.

Download some charity with your Kindle

Venture into a cafe or travel on public transport these days and you’re as likely to find people staring at a piece of plastic as you are with their nose in a book.

E-readers are becoming ever more commonplace; Amazon’s e-books have been outselling hardbacks.

It’s impossible to tell what someone is reading behind the grey, uninspiring casing of an e-reader. These gizmos have spoiled a favourite way to pass the time on a train journey: trying to guess what a stranger is like by their choice of reading.

Coloured leather covers for e-readers can’t replace the flourish of colour and design boasted by real books.

Aesthetics aside, they have had a more serious impact on book sales generally and charity fundraising in particular. Sales of traditional paper books have declined by 4% in the last year, meaning there are likely to be fewer books around to be donated to worthy causes.

Donated books earn £21 million a year for Oxfam.  This revenue is quite a considerable contribution towards their aid work to overcome poverty and suffering across the world. Naturally, the decline in sales of traditional paper books is a concern for them.

Oxfam’s Rose Marsh said: “We are conscious that the number of books being purchased new is decreasing. E-readers are increasing in popularity and will continue to do so.”

Rose also points out that e-readers are at the moment only good for fiction; anything with images is better in paper form, which would seem to offer a glimmer of hope for traditional books.

However, it is inevitable that technology will catch up within a couple of years and offer books across every genre in all their glory.

As you’d expect, Oxfam takes a proactive approach to deal with a risk to a rich source of income.  They support the book trade, as they need them to sell new books for people to buy and then donate when they have finished with them.

The charity also asks people who have bought an e-reader to donate their physical books to them.

Rose continued: “There are plenty of books out there. We are looking at ways to make it easier to donate.”

Oxfam has been encouraging people to give their unwanted books a new home through the annual books donation drive and promoting donations at work. An incredible 30,000 second-hand books were donated at this year’s Hay Festival.

Besides helping good causes, charity shops are an excellent way to help feed a reading habit without breaking the bank.

Unwanted gifts often find their way there, meaning you can often nab a book, still in pristine condition, for a fraction of the RRP.  Recent bargains include a hardback book for a mere £2.

I am a voracious reader; being hungry for a good read makes trips to bookshops expensive. Of course, I have my favourite authors, but love making new discoveries.

For me, part of the pleasure of buying a new book is to be found in browsing and having a cover catch your eye. I’m unconvinced that pressing a button to download a new addition to an e-reader offers such a level of satisfaction.

Being unable to leave a bookshop empty-handed means I have quite an extensive collection of books, of nearly every genre. I love the range of colour offered by their spines stacked alongside each other. The rather high ‘to read’ pile offers a thrill of anticipation.

E-readers are changing the way we treat books. If I’ve enjoyed a book and think a friend will also like it, I share it with them.

Downloads can’t be handed around; your friend will have to purchase the book if they are going to share your recommendation.

That’s good for the publishing houses and the economy, but bad for the time-honoured tradition of sharing literature amongst fellow book lovers.

Books I don’t enjoy get another chance at life by being donated to a local charity shop.  With an e-reader, your only option is to hit ‘delete’ to make space for more deserving titles. That seems quite wasteful.

I’m not a complete Luddite; I can see that e-readers have their advantages. Investing in one means you will no longer have to risk exceeding your baggage allowance because of a stash of holiday reading, or weigh down your bag on a train trip.

The decline of books is disheartening.  However, while technology is changing the way we buy and deal with books, my hope is that the resulting portability of literature will help more people discover a love of reading.

A final thought: if all your reading is now on an e-reader or tablet, spread a bit of cheer by having a de-clutter and donate your unwanted books to your local charity shop.

Berlin street art