For Hugo For Life

A family's longing for a child lost to Meningitis


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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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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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Moving on

hugo in garden It is said that house buying and selling is one of the most stressful times one could face in their life. My experience of it pales in comparison when reflecting on the worries and pain in dealing with the days leading up to Hugo’s death and my life in the present day. We were enduring severe stress as we were facing a modern day horror and were potentially going to move house four days after Hugo had died. As it turned out, with a series of delays on this house purchase, it has enabled us to arrange Hugo’s beautiful celebration day and his private funeral the way we wanted and we are moving on to a new beginning.

Looking back, we would not have achieved things for Hugo if we had moved house earlier and I would imagine our grieving process would not have been so gradual in its journey with such an immediate house move. From the day I came back from the hospital without Hugo, I was in floods of tears whereever I went because everything in front of me reminded me of him so much and I was in the most unbearable heart wrenching pain. My body sometimes shook uncontrollably, having shortness of breath, feeling dizzy moving about and becoming weak and cold. There was nothing that we could have done to prepare us for everything that was happening to us. We had no choice but to take every hit and deal with each day the best way we could. Simon, you are my rock.

bookshelfThe fact that we are about to move house hasn’t really sunk in yet. There is lots to do such as changing address, packing up our house and organising our move. I have mixture of feelings that I know I’ll have to come to terms with very soon as I am leaving the house Hugo had spent most of his life in.

There are lots of memories here like, I used to hold Hugo’s hands and shadow run with him after Jasper from the bath via the corridor to my bedroom and then Jasper would hide and then we would call out “Jasper, Jasper where are you?….. come and get me!” then Jasper would appear from hiding and chase after us, Hugo in fits of laughter and I would run as fast as we can back to the bathroom, we would do this over and over again.

bathtimeI will miss the garden where they used to play football and to help me pick up the apples that had fallen off our old and huge apple tree. We used to sit on the grass and have lots of picnics there during last summer. I will really miss the bath that he shared with Jasper as many fun bath times were had with so much splashing and laughter. I will miss the lower cupboards in the kitchen where Hugo used to open to pull out my nice crockery and tins. I will really miss the book case where he pulled out his baby books from the bottom two shelves and I will miss his hand prints on Jasper’s bedroom window from when he stood on the window sill with me, pointing at the birds and trees in the garden –  I remember Hugo would squash his face on the glass and smack his hand from the inside to scare the birds away…..so many parts of the old house that I will leave behind that still trigger those memories.

Packing his toys, books, nappies, clothes and shoes etc. away in boxes is still very hard for me as each thing I pick up triggers my grief and reminds me that he is physically not here again and I start welling up with tears. I do dread the day when I have to leave, closing the door and locking it for the last time. There is no doubt,  I will get really emotional and my grief will consume me but I will make sure that I’ll call out for Hugo to leave with us and to follow his family to the new house to start the beginnings of the new normal life. Let’s go Hugo, come with mummy x

 

 

 


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Missing you

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Last night, I woke up in the middle of the night and was thinking about Hugo and how he would adapt living in the new house when we move eventually. If there were any spirits in the new house I would ask them to embrace my family and look after Hugo as well. I then was reading Simon’s latest post he shared and agreed that in whatever form Hugo might come busting through our bedroom door I would not be scared and would accept him without any hesitation.
My thoughts about Hugo wandered back to when he was away for whole days at his nursery while I was working in the City. The carers used to tell me that Hugo had a lovely day but on several occasions when going through his family photo album he would cry every time when he came across the photo of himself with mummy and it’s because he realises mummy has been away for a whole day and he misses her. The photo was taken during a hot summers day at Chessington adventure park in 2013.
Hugo has died nearly two months ago now, it’s a long time and I kept thinking that if he misses me he should talk to me in my dreams. Please Hugo come to mummy’s dream.
I closed my eyes and went back to sleep. I started dreaming……….we were in our sitting room watching TV in the late afternoon. My dad was on the sofa reading his newspaper, Simon’s dad was just standing around looking at Hugo’s photos near our book shelf and I was sat on the end of our white sofa. I said to all of them, please don’t be scared and Hugo is sleeping upstairs.
I suddenly got off the sofa and sensed that I should be going upstairs to check on Hugo and found him in Jasper’s room standing with one foot on the side of the bed and the other on the wooden stepper. He was calling for me as he was stepping down and off the bed. I came to him, carried him in my arms and took him downstairs to see everyone. I kissed and cuddled him really tight and it felt so real. When we got down the stairs, I felt that everyone had knew that I was cradling air and sat down back on the end of my white sofa. I picked up the small ball near by my foot and tossed it up to play with Hugo. He really enjoyed it and laughed away. Simon’s mum came into the room and realised Hugo was in my arms in spirit and joined in to play too. She also took Hugo off me and gave him big hugs and kisses and handed Hugo back to me.
My mum came into the room and sat next to me. By then I was grabbing the bigger football and with Hugo sitting on my lap, we played catch with Jasper and Simon just like old times. We took a rest and I turned to my mum and said “can you see Hugo? His hand has reached across to touch you for a bit of a squeeze”. My mum replied, yes dear, I can feel his little chubby hand. Then I woke up from my dream as Simon’s alarm went off.
I told Simon immediately this morning and we both sat on the bed and cried. We both realised that Hugo missed mummy and he came to my dreams. I felt happy I dreamt about him but also extremely sad that he is not actually here physically. I am still missing my baby so much. The dream was so real and the cuddles and kisses and laughs all felt so vivid that I didn’t want to wake up! However, the more I want to see him the more sad it is when I realise it is only in my dreams that I can. I want him here with me so badly – this is the grief that takes over and it hurts so much. I still can’t imagine how I can be less sad over time.
Hugo’s family photo album consists of a series of laminated photos with Jasper, Daddy, all the grand parents and his uncles. The carers made it into a lovely album that he could flick through when he was feeling a little upset during the long day at nursery. Every time he comes across this particular photo of him and mummy, he would always cry to a point where the carers had to take it away for a while. It’s so sweet when I heard this from the carers as it made me realise that he really misses mummy being away from him more than anyone else, mummy was his world (and daddy of course). It was a special bond between us, we had never been apart for long days until he started fulltime nursery. This family album accompanied Hugo inside his small white little coffin. Now he can look at them wherever he is, whenever he wants.
I love you always Hugo. Mummy kisses forever xxx

 

 


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Letter to an old friend

Dan.

It’s a tragedy beyond anything that I might have ever imagined that could happen to my family.
It just doesn’t happen Dan, just does not happen.

But then it did and that is the one conflicting thing that escapes my reasoning. Hence I cannot come to terms with it but people and books and articles tell me that I will eventually accept that he is gone because this is natural effect of the passage of time. This strikes me as a contradiction on a personal level because I will never accept the loss of a child, how can I?

However they say that we all deal with the grief in our own way, uniquely and I agree. Since one can explain grief but one cannot ever truly feel the same as I do because it’s my soul that has been hit by a truck. It’s my soul and it hurts like nothing else can. It creeps, it explodes and it has no tempo.

Your sharing of my pain is selfishly of comfort to me. I feel wrong to feel like this, to almost want you and anyone else to have sensed something of pain for Hugo’s passing. But to me it seems right and why not? You are a father and you empathise and above all it shows me that you care, for if you didn’t then you would not feel at all. My limited perception of tranches of Chinese family culture in older generations, that prevail even through to my generation, is that grief is to be eschewed, put out of mind and to be traversed hastily. Constant words of don’t be so sad about it, don’t ponder on his passing. Death becomes a fact to be ignored, reminders of a loved one to be tip-toed around in case emotion is betrayed again and again and again. Death becomes the conduit for Chinese superstition and respects are not paid, people avoid you when you might appreciate seeing them and you are advised that your presence is best not required to sully life celebrations and formal events. All nonsense.

Your words meant so much to me. Thank you for telling me how you really felt, that is true kindness in my book.

Hugo was more baby than Jasper was. Jasper has always been more mature than his years and very gentle physically and in demeanour. Hugo was not that. He had a very good nature but he wanted his way when it suited him because he didn’t see what possible reason why it shouldn’t. He was a boisterous little boy who loved us with all his heart. Hugo had an enormous sense of humour and he connected with Jasper and Eva and I on so many tricks that he played on us and us on him. He understood how to create fun and play and was beginning to say words with meaning behind them. He loved music. He was really really sweet. His physicality made him all the more cute and cuddlier.

It is a rare thing I think that you consciously experience the total joy of life as you live it or know true perfection when it is in front of you. I think that you usually realise this when it has passed or you lose it. But it was special when Hugo arrived and I felt like our living breathing family was the perfect unit for us. No more children came to be because Jasper and Hugo were it and firmly engraved in our book for life. The jigsaw was complete.

Now the unbalance is overwhelming at times.

Simon