For Hugo For Life

A family's longing for a child lost to Meningitis


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crashing waves

The clarity of the ideas here rang loud and true with me, thanks so much for sharing this Ben. The more you have of love, the more the scars will deepen. I am equally convinced that the hurt surrounding bereavement matters but I learnt to let the grief run its natural cycle. I was very close to leading myself down a path of obligated grief due to a deep sense of guilt of not giving the same daily attention to my son as I would have, were he were still alive.
The concept of scars in my mind immediately drew a parallel to a scene in Cars 2 where Mater was about to get a disguise for a mission:
“Holly – The disguise won’t calibrate effectively without a smooth surface to graft onto.
Mater – For a second there, I thought you was tryin’ to fix my dents.
Holly – Yes, I was.
Mater – Then, no, thank you. I don’t get them dents buffed, pulled, filled or painted by Nobody. They way too valuable.
Holly – Your dents are valuable? Really?
Mater – I come by each one of ’em with my best friend, Lightning McQueen. I don’t fix these. I wanna remember these dents forever.”

Take care, Simon

Life as a Widower

A friend emailed me this morning after reading something he thought I might like to see.

‘Now in my defence,’ he began, ‘I never send you stuff like this, but I stumbled on it this morning and thought of you.’

I appreciated his caution; some days I’m just not in the mood to think or talk about grief. But then once in a while I read something that I feel compelled to share, mainly because I think it might just help someone else. I know from experience that a few words written in the right order and delivered at the right time can make all the difference. I for one have many people to thank for the words and time they have shared with me.

This following piece is guest post of sorts. Four years ago a young man, whom I know nothing about, took to the internet to try to find…

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One year ago & arrival of an angel

IMG_0156The first anniversary since Hugo’s passing was a difficult and emotional day. Just a over a year ago he was alive, at the prime of his life, enjoying every moment with his family and playing with his brother Jasper. I remember my cries for Hugo to try one last time to wake up, I was constantly praying for a miracle to happen that he would be cured and end our nightmare. I begged him not to leave us and I knew inside that he had tried his best to stay with us as long as he could.

That day came when the life support machines were turned off to end his suffering, I lost my baby Hugo. I am a mother who lost her child. A big part of me went with Hugo as my grief consumed me instantly from that moment onwards. I was at my lowest point of wanting so badly to take his place so I can bring him back. If I could lay down my life to choose for him to live, I would do so without any hesitation as would any other parent. I wished I could go back in time and change what had happened to him.

IMG_8861We sang his favourite nursery rhymes during his last moments of life as his heart beat stopped beating in my arms surrounded by Jasper and Simon all holding his hands and feet. All my family and Simon’s mum were at his bedside. Enough was enough, his little body had worked so hard to fight this awful disease.  He had to leave us and we feel very sad that this was the only path that we could take. I know he misses us and we miss him just as much and more. He is in a place that does not have any concept of time, he is safe and he is surrounded by love. I know these are my thoughts of comfort because he has given me signs to say he is OK.

“I know Hugo, mummy knows and is very proud that you have told me soon after you passed. You put up such a strong fight on your tiny tired little body. My little Hugo, I have missed you everyday and will never stop missing you until I see you again.”

IMG_0303We have got through this year with great difficulty and for me it was even more so as the pain of my grief was heightened even more with the hormone exchanges in my body whilst I was pregnant with our third baby who arrived in March this year. Mixed feelings of happiness and sadness toyed with me and was ongoing throughout the pregnancy and afterwards.

On the 26th March 2015, Hugo and Jasper discovered that they are big brothers of their baby sister Bernice. I felt Hugo knew all along as I’m sure he was watching over the birth his sister. This is why.

Early that morning, I left the house with Simon after making the call to Epsom hospital to confirm my appointment time. I was the first patient to have the elective C section of the day. Hugo was constantly in my head on the way in the car and when I arrived I was told to wait in the recovery room to get prepared by the midwife. To my surprise, I didn’t expect another couple already in the same room and we were separated by a curtain. I assumed that the woman gave birth via emergency C section and we heard her new baby starting to cry and when they uttered a few soothing words to the baby and it rang clear to us ” oh Hugo, Hugo……”.
We were so shocked and surprised and immediately we felt we were blessed with this as a reminder of Hugo’s presence. It was like this that we learnt that they called their son Hugo. An hour later, Bernice arrived calmly and safely, Simon and I were very happy and I was overwhelmed with emotional feelings of joy. Our little Hugo was also there to share our joy as well. We took Bernice to visit Hugo’s baby garden on his anniversary day, 10th April 2015. It was a lovely sunny day and they were properly introduced finally. She will grow up getting to know both her brothers.
Loving our Hugo forever, we are now a family of five.
Eva, Simon, Jasper, Hugo & Bernice
xxxxx
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Feliz Navidad a nuestro querido Hugo

IMG_3123This year Christmas, we spent out of the country with just ourselves, contrasting with the gathering of friends and family last year when Hugo was still around celebrating the xmas spirit. We decorated our tree and with the baubles and lights. Hugo was very excited and kept on touching the lights and trying to pull them off the tree last year. He was smiling away on Christmas Day when I dressed the boys up in fancy dress. Jasper was a green little elf and Hugo was the little cute Santa. It was so happy and fun. We took family photos and opened presents on Boxing Day.

There were lots of friends and children visiting and sharing the lovely toys and food we hosted in our house over the holidays. Hugo and Jasper loved all the attention from playing with other children. It was busy, loud and manic with sleep overs and constant eating and playing. We could not go through the same without Hugo this year and it felt too false and hollow, just going through the motions. Spending Christmas away for us in a quiet relaxing place away from extended family and friends is what we decided to do.

IMG_3164_newWe are missing a dear loved one from our family and xmas is an intense reminder of the line that was stepped over when our lives were suddenly infused with sorrow. At this time the warmth and glitzy feeling of crimbo represents a world that we don’t live in, save for our our efforts to provide some joy for Jasper. It feels as if we are looking through the window. But when it comes to Jasper we remain genuine for him. There is nothing that we can do to bring Hugo back to life.

We were invited to a few Christmas services which we all accepted to go and attempted to attend. I thought I could cope, be strong and be ready. I soon realised I could not control my feelings again. Our first concert organised by the MeningitisNow charity was the hardest thing for us to go through so soon after Hugo died. The moment I entered the church I was feeling overwhelmed with sadness on reflection of the music in the church hall. My poor little Jasper felt exactly the same way. He was immediately uncomfortable but it only took him a couple of minutes to realise how much he missed his little brother as he burst into tears and had to leave because the music and atmosphere made him really unhappy, reminding him that he is still very sad about Hugo. Jasper’s grief came out out on this rare occasion and I gave him a big hug and told him he will feel better afterwards and he did.

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It hurts me to see that my little 5 year old boy has so much on his shoulders and I can’t take any of that away from him. I can only hope he gets better at dealing with his grief of Hugo better and in the future he can still remember his little brother and would be much stronger to carry his heavy load of grief. We are all on the same journey and only with time we can ease the grief that will never leave us but it’s so hard to see that far to that moment.

IMG_1201IMG_1197We didn’t make it as a family to the other carol services as it was immensely difficult to bear but Simon and I did go to the last one that was held by the crematorium the night before we flew off to Barcelona. I could only manage to light a candle but could not stay any longer to think about Hugo amongst all the other people in the congregation who have lost loved ones. The pain of missing Hugo really stabbed my broken heart again leaking all the feelings of our tragedy and filling up it up with sorrow. Those feelings of our tragic life just attacks me with no way of stopping it. I can only take it all in and let it leave me when it wants to.

This is a life experience not everyone can truly understand but many have empathised. Thank you for your festive thoughts, cards and gifts to us, Jasper and Hugo. Christmas Eve night for us was a beautiful evening at beach, on La Mar Bella in Barcelona where we lit Christmas candles and released a Christmas balloon with card messages for Hugo. We woke up to a bright orange sunrise on a clear horizon on Christmas Day. It really brought smiles on our faces and knowing Hugo was sharing the same sky with us.

Merry Christmas from us, Jasper, Hugo and little bump xxxxx

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My Journey with Hugo

Daddy carrying Hugo

Daddy carrying Hugo

I find myself disassociating with the word closure the more that I read about it when reading articles about dealing with grief. To bring closure means to find a resolution and to move on. It is used commonly to reference achievements in psychological terms usually sought as a stepping stone after personal trauma. For example it may have been appropriate to talk about closure after the visit to Kings College Hospital to discuss Hugo’s treatment and decisions made for him whilst in their care. It was the last of the organisations that we had to see in relation to Hugo’s death. To stop at the description “organisations” is to do a disservice to the myriad of real caring & sympathetic people that we met along the way.

The doctor at the Intensive Care unit at Kings was a fabulous Asian woman who was no-nonsense dragon, “hard ass bitch” (her words) who broke and cried with us all the way through the events in April. How she does her job and stay above it on a professional level day after day…I will always have the greatest respect for doctors. We talked about Hugo’s 4 days at Kings in her care, about the gut feeling that made her send Hugo for a CAT scan and about anything that we could have done as parents to have caught the signs earlier or to have insisted on him going to intensive care earlier, or to have just screamed at the doctors and nurses to have tripled checked the scans, signs, etc etc etc. As with all the other medical professionals she insisted that Eva and I did the best that we could have done and nothing more could possibly have been expected of us. But that day at Kings, we began to believe her again, to stay the feeling of guilt at least for another few days. I asked the question about what was it that really killed Hugo, in medical terms. So yes I get that the bacteria is a vicious son of a bitch, vile strain of haemophilus influenzae that causes meningitis, but how did it do it?

IMG_1256This next section is caveated – it is a layman’s recollection and summation of a doctor’s explanation. She began by explaining that bacteria can differ due to the different parts of the body it likes to seek out. Bacteria classified as meningitis bacteria like to seek out the meninges, the connective tissue layers of the brain and spinal cord – a membrane. Once the bacteria penetrate the blood-brain membrane, it multiplies like crazy with little to hold it back. This is because the meninges exist to prevent the body’s immune system from attacking the brain so the relative lack of an immune system capability in that area of the body gives bacteria free reign for a while. But as the body fights the infection, the cells in the body become leaky – cells are broken and tissue is flooded with white blood cells & proteins, causing cells to swell. With Meningitis the brain swells. Although Hugo’s course of antibiotics had killed off the bacteria, his body’s self defence mechanism set off a reaction that would make things worse. In adults, the skull cavity has proportionally more space for the brain to expand into whereas in little children there is nowhere for the brain to go.

My next question was, how did Hugo get infected. I mean, not where or who, but why would this bacteria infect him and not us? She paused for a moment and said that no one really knows how infection takes hold. That is, medical science still does not know what it is that allows a pathogen to break past the barriers that protect us and cause an infection. Hence him, not you, not I. Hugo was unlucky pure and simple. His body was in a certain state at a certain time and somehow it broke through. It could have been transmitted respiratorily and the bacteria could have been living in any one of us, even still living in us and we could have developed the antibodies against it. IMG_1211Encapsulated haemophilus influenzae bacteria is vaccinated against in the UK and is available to every baby on the NHS, known as the HIB vaccine. Hugo had unencapsulated haemophilus influenzae which has thousands of variants and cannot be vaccinated against – it is non typable. Infection is also extremely rare and there are barely any cases in the UK. That was a shock to me. The feeling of unfairness, why me? Subsequently amplified a thousand fold. That hurt a lot, odds that like shouldn’t affect my family. We cried and cried but the doctor was a amazingly empathetic person. It was almost like counselling but she was so personal. I left by saying that we were glad to have met her. That seems mad, but honestly it felt right that it was her that we met and no other intensive care doctor.

Eva and I have attended all the sessions that we have needed to attend to settle Hugo’s affairs; we’ve been to nursery, spoken to coroners, Epsom hospital, King’s College Hospital, nurses, GPs, funeral directors, crematorium directors, counsellors and Charity staff. We’ve cancelled Hugo from policies and spoken to our community. There is no closure with the death of a child. The family is going on a journey, four of us, one that began when Hugo was born. He will always be a baby.

– D –

We are still encouraging donations to MeningitisNow, the charity that helps families affected by Meningitis as well as funding much needed research into the disease. Please give generously and share this message.

http://www.justgiving.com/hugowong


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Happy 2nd Birthday

babies and tiny todds 896Tomorrow is Hugo’s birthday I know I haven’t really spoken out loud to anyone about his birthday and convey what I would like to do on his special day. It would be an emotional day for me and my family so I have decided to keep it a small and simple celebration this year as it has only been four months since Hugo left us. I hope to muster more strength to organise something for next year.

If you would like to do something for Hugo you can light a candle on his Forever Fund and write a lovely message there – My family and I would draw comfort from reading your well wishes and to know that  you are helping us to continue Hugo’s good work and hopefully we can exceed his fundraising target! Thanks.

http://meningitisnowforeverfunds.tributefunds.com/HugoWong

My letter to Hugo.

To my baby boy Hugo,

It is going to be your birthday this Sunday 10th August 2014. You would have been exactly two years old and I can imagine you running about and saying full sentences and learning to sing the birthday song at your own party if only you were still here……..I have tears of sadness of missing you so much but I can only imagine you at your party what you should be doing and enjoying the fun you deserve.

If only you were here, you would be celebrating with all your friends from nursery at your birthday party.

If only you were here, you would be chasing your party balloons and dancing and playing birthday party games.

If only you were here, and if you got hurt or fell over at your party, you would be running up to mummy for kisses and cuddles of comfort.

If only you were here, you would be bursting all the bubbles with Jasper and friends from the electric bubble machine and be laughing like crazy bears, if only you can be here.

If only you were here, Daddy would be snapping lots of photographs and videos of you so we can compare how much you have grown since your first birthday.

If only you were here, Jasper would be singing happy birthday to you and give you a warm brother kiss and hug – he misses you so much.

If only you were here, you would have blown out two candles on your birthday cake and everyone would have been clapping and cheering for you whilst you cut your birthday cake with mummy.

If only you were here, Daddy would be massaging your fat little feet when you are tired after your party and be reading you bedtime stories with Jasper.

If only you were here, mummy would have let you sleep in bed as a special birthday treat so you can snuggle up warm and close and wake up the next to mummy in the morning.

If only you were here, the next morning you would be opening all your birthday presents with Jasper ripping the wrapping paper and throwing it all about creating lovely fun mess for mummy to clear up.

If only you were here, you would be playing with all the toys you got from your friends and be sharing it with Jasper too.

If only! If only! If only! We wish this could come true one day when we can all be together.

Happy birthday to you my sweet baby Hugo. I love you always, mummy x


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Walking for Hugo at Nonsuch Park, Surrey

mainSunday 29th June turned out to be a truly amazing day to do a charity 1 mile walk in Hugo’s memory at the Nonsuch Park. Simon and I are truly blessed to have such a wonderful school community who we have only known for a year and a half through Jasper attending preschool, reception class and after school club. Hugo was always around me when I went to drop off and pick up Jasper.

Just from the collection buckets alone, £440 and still more is to be added to the amazing total on JustGiving pages set up by Jo McAneny and other parents too. A special thanks to Jo, Tor and Gerry for the work that they put in to conceptualise and organise this event. We thank everyone deeply for their work to raise money and for devoting a morning to walk the mile with us. Hearing Hugo’s name mentioned in everyone’s conversations today made him feel alive again. This walk has also brought me closer to the school mums who we have become friends and I am a little more comfortable in expressing my feelings.

Before the walk commenced, Jo McAneny,myself, Steve Dayman (founder of Meningitis Now) and Simon said a few words. We thanked everyone for being there and gave an update about what has been raised so far. It was so heartfelt to witness the turn out of so many generous people who sympathised with my family and wanted to raise awareness. Steve mentioned rightly that there is always more charity work to be done particularly with the push for the MenB vaccine to be made available to all infants on the NHS (currently only available on private health insurance)  as there is currently no vaccine for this strain of Meningitis.

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The kids had great fun. Just before the countdown for the walk Simon mentioned to all the children that this is not a race! But of course as soon as the word “go!” had been shouted and the orange ribbon barrier was down, we had over 50 kids charging across the start line! The mass of walkers thinned out naturally and it was amazing to see a sea of orange spreading along the grassy path of the 1 mile route.
For those based in the Epsom area, look out for a potential article in the Epsom Guardian about Hugo’s walk. Thanks to Emma for putting them in touch with the event. Also, thank you to Andy and Glenn who were running around snapping away with their big boy cameras.
I’d say Sunday has been an emotional day for me, my grief for Hugo tried to emerge from my speech but soon took over me as I started to walk. The sunshine reminded me that Hugo was ok , he brought those warm sun rays on us to walk away happy and loved. As I walked, I recognised Hugo has been here before too. I remember I used to visit this park with Jasper learning how to right his first bike with his daddy, uncles and I was pushing Hugo in his buggy crossing the same paths and grassy areas. It felt like he was walking with me again………..I could imagine him running after the rest of the kids, falling and rolling around on the grass. I’m so proud and comforted by all the efforts and support from everyone. Thank you from us four. XXxx
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A day before the house move

Packing before the move

Hugo amongst the boxes in the lounge

This is my last post in the house before we move property. I’ve been a bit control freakish recently, ensuring that I prepped our belongings for the professional packers before they commenced work, to make it easier for them. Lift and shift was the idea, but I hated the idea of not knowing where everything was after the removals team had put everything in boxes, so I tidied up and organised stuff into their rightful drawers first. My investment would surely make pay off when unpacking. But I also wanted Hugo’s things separately and clearly marked so that it wouldn’t be lost amongst the melange of family items.

As a means of settling Hugo when he arrives at his new house, I put his favourite things in our suitcase for easy access. A Row Row Row your boat musical book will be one of the first things played in the house. Jasper seems indifferent to the move, not overly interested about the complete change to his home environment over the course of the following day, despite repeated but gentle reminders by his worried parents. Perhaps he has got it right; after all, we are still the same people with same behaviours and prejudices socialised and embedded over many years. I do acknowledge that the environment can play an important part of our wellbeing. So time will tell how this house will change my family but I know that we have a massive opportunity to make our mark.

We will find a little spot for Hugo. It won’t be anything like a shrine, more like a quiet space where we feel him alive again, contemplate his life in peace, maybe a photo or two. Hopefully a sunny spot will make itself known to us for this reason. Hugo has seen the place in passing seated in our car but has never set foot inside during viewings. I am drawn to imagining him running through the house if he were alive or having bath time or bedtime with mummy and daddy. He would still be sleeping in our bed. If only he was still alive.

Eva’s brothers came over today to see us and consequently were roped into doing hard labour in the garden. We have two baby trees that were planted when we first moved into Stoneleigh. One is a Grand Fir (Christmas Tree) and the other is a Korean Fir. The Korean Fir blossomed like crazy over the year and a half that we have lived here as a family. It has these beautiful purple cones that project vertically and needles for leaves that are not at all prickly but are in fact quite soft and densely packed on each branch. Its appearance is stocky and tends to grow as wide as it grows tall so it actually looks like a cuddly toy tree. This was not lost on Hugo either who used to stomp, waddle and fall over to the Korean Fir at the back of the garden to pat and cuddle the plant, which was initially the same height as Hugo. We know it as the Hugo Tree now. It is uprooted and ready to be taken today, along with the Grand Fir to be replanted in the new garden. It is a small thing, but I take a little comfort in believing that something of Hugo’s life will continue to grow near his daddy, in the tree that has had the physical touch and attention of my precious boy.

It was Father’s day just gone. I know Hugo, so do I, daddy.