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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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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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.

 

 


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heaven’s gates

So many parallels, Hugo died at the same hospital as Kings College on the 10th April 2014 from Meningitis caused brain swelling and failure. He was 20 months old and passed so suddenly. Reading this post about the hospital experience brings the hurt right my core, references jumping out such as “flu types symptoms, CT scans, seizure, kept alive by machines, unclipped the tubes”. Atheist but feeling a human need for religion to believe that he is living in another form, not obliterated from existence and to guarantee my reunion with my boy when I go. If I woke up tomorrow and saw Hugo stomping through the bedroom door, I would accept him in a heartbeat, no questions asked, no fear of the preposterous defiance of nature. My heart goes out to Bill and family for their pain, one father to another.

Life as a Widower

This is a guest post written by Bill Wright

In January 2013 Bill (37) and wife Mandy (36) were excitedly making plans to buy a bigger ‘forever’ house. They had just overcome the initial shock and worries of coping with three children, rather than the planned two, when their twins Ed and Anni were born in 2010 following Bella, born in 2007. Bill had never felt happier his whole life, but then Anni unexpectedly died without warning on 8 January 2013 from a brain tumour. Bill was initially drawn to my blog as I also have a two-year-old son, Jackson, who is grieving and confused. Bill later found out that Ed and Anni share the same birthday as Jackson and that, tragically, Anni died in the same hospital where Jackson was born.

Our two-year-old daughter, Anni, died unexpectedly from a brain tumour on Tuesday 8th January 2013 after we…

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Forever Day with MeningitisNow

We almost didn’t go to the Forever Day but decided pretty late in the week that we should be brave and make the effort.

I’m really glad we did. It made us realise that we had not had our own time as a couple to grieve away from home, away from distractions. The first workshop hit it home – “Looking After Yourself”. It was plainly obvious but hidden in plain sight all this time. We thought that we did everything that we needed to do to haul ourselves through the first 2 months. Actually we had looked after everyone else but us. Parents, brothers, Jasper and our community all served and embraced and loved at the Celebration Day, but we forgot to look for ourselves in amongst our sharing.

Jasper made friends with everyone. We found strength from our peers today, such expressions of hope from the lovely trustees and parents with similar sentiments as us. We sensed the oneness from all who were there. As Lisa said it was borne out of tragedy that we are met but it has made us so much kinder to one another.

I’m reading William Wordsworth’s We Are Seven. (Ta Vanessa).

We shall visit the memorial garden in the future. Hugo will be honoured with a plaque to join the others who lost their lives to Meningitis. It took us 2 hours 45 mins to drive back to Stoneleigh, the M25 was harbouring delays due to happy campers getting back at the end of the half term break. Something has been fixed though, Eva smiled for me and Jasper. Bubbles Hugo.