For Hugo For Life

A family's longing for a child lost to Meningitis

Tag Archives: Meningitis


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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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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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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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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.


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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


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A recent photo

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It’s all in his eyes.

I’ve just realised, that when I look at the countless photos that I captured of my boy I scan them intently for his eyes because they tell me how he was feeling at that time. What was he thinking about when he was looking at daddy, what innocent and simple ideas were floating through him in that moment? I love his eyes. I can drown in them all day, beautiful, endearing, longing. One day looking at him will make me less sad.

This one I picked out because it is so Perfect. The image makes him alive to me, just for a little while. He tells me that he is perfect and ready for the next thing coming. It is a look that shows Hugo’s readiness to live, a moment when he is free from any emotion. It’s not showing baby happiness or excitedness or wanting.

It is just Hugo.
It’s you baby, my son and I see you again.
– daddy –