Tag: smile with Harry BoBo

Pressing my reset button…

What do I mean by “pressing my reset button?”

Well, this is something that has become so apparent to me over the last 11 months. I need resetting every 2 months, it used to be every other day, then every week, but now I can last up to 2 months…progress I guess. What I mean, is that I have to see a medical expert to help reset my relentless ‘looping’ mind. This can’t be emotional support from friends, family or even Lee, it has to be a Doctor, specialist or professor. It has to be someone that can sit with me, listen to me cry and tell them my repeated fears that “I missed something…”

I listen to them, they reassure me that Harry just had a cold, like any other toddler his age. He had a little cold, was a little under the weather and a little cranky…like any other 20 month old can be. But, it seems no matter how many times I am told “You could not have seen or predicted this from happening…” it still sits hard wired into my mind.

Is this because I am his Mummy? Is it because Harry was in my care and I put him down for a nap that afternoon? Or is it the maternal imprint your baby leaves on your heart from the moment they are known to you, to the moment you hold them in your arms for the first time and to the moment you have to say goodbye. Is it that the bond is so, so strong, that you can’t get your own head around what has happened and that surely… “Mummy should have known something was wrong?” I don’t know, but I do know that I flip flop from listening so intensely to every word a medical professional tells me to, getting caught up in a never-ending loop of anxiety, guilt and blame. I can be ok for weeks now, I somehow manage to retain what they are saying to me for longer. But, recently I got stuck again…literally I got completely stuck, just like when you listen to a CD and the song gets stuck, that’s exactly how my mind works. I can be going along and then all it takes is one bad moment, one conversation that something innocently is said, but to me I hear it completely differently. It really doesn’t take a lot to flip my mind back to blaming myself, maybe it will always be that way, maybe I will always need the reassurance of a doctor to tell me “I could never have known.”

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This time, I got so stuck, that I couldn’t really talk to anyone, I even lay in the bath reading Harrys post mortem report again, googling every word (I know…don’t Google!) But, it’s the only way I can try to understand the medical terminology. To the specialists, they see nothing out of the ordinary, other than a cold. What I see are lots of big words, lots of talk of respiratory tract infection and the word pneumonia. To the specialists, they don’t see this at all, they see a toddler that had a cold, just like many toddlers of his age and they go down for a nap every day and wake up. They see an unexplained death, a total tragic event, that couldn’t have been foreseen and cannot be explained with current medical knowledge. They tell me that if I had brought Harry to the doctors that morning and said, he has a bit of a cold, yucky nappy and won’t eat his teacake… they would have said, take him home, rest and fluids. Even in the report there was no sign of any bacterial infection that could have been treated with antibiotics, it was just a virus…the bloody common cold.

So why, did our baby boy go down for a nap and not wake up that day? No one knows, maybe one day with research we will have an answer, but for now all we can do is keep fighting. So, can you see how I get myself caught up in this viscous circle of doubt, guilt, blame and anxiety…would this change if I did have an answer? I honestly don’t know…
As if grief isn’t hard enough, it decides to throw all this into the mix too. I think to date, this has been the most debilitating part of grieving for Harry, it works deep into your thoughts and stays there, eating away at your confidence as a Mummy. It takes away the self-assurance I once had as a parent, the belief that “Mummy knows best…” it’s all taken away from you and takes so much effort and energy to start to trust in my ability and instincts again.

So, this is me and my reset button… I’ve just been reset again and feel I can function more today. Just a 10 minute chat with my doctor and I have been reset. Yes, I cried, I blamed myself again, but to sit and hear the words “This is not your fault, you could never have known…” somehow helps me feel more at peace again in my own mind. It doesn’t take away the relentless screaming of my heart, my empty arms or the unrelenting ache for reality to be different and for the impossible to come true.

If only I could go back in time for you Harry and reset our lives to the crazy, messy, chaotic fun we used to have together. I miss you so much, my funny little man! xx

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“There is no right speed at which to proceed with one’s healing.

There is no one path that serves everyone all of the time.

Not every answer, is everyone’s answer.”

Jen – aimhappy.com

Kia ora tātou (Hello Everyone!)

Where have I been?
New Zealand…Well, for 3 weeks anyway!

Sorry for the radio silence, but to be honest I decided I needed a break for a couple of months from blogging. So much has happened, that I haven’t really known where to start, so I just didn’t write anything! Anyway, I apologise if this blog is a little jumbled up and if I jump around a bit, but it’s been a while, so the thoughts may come out a little randomly!

But over the weeks and months, thoughts and words have bubbled away in my mind and I feel I have to start writing again, before I implode!

So, where do I start? Since my last blog, we have had more DNA tests at St George’s. We are going back for more results in February, so until then we have no more medical insight into what happened to our little Harry. But, we have made some positive steps forward to remember and start fundraising for our baby boy. I have started a face book page @SmileWithHarryBoBo and an instagram page @smile_with_harry_bobo where I share our journey, memories, news and thoughts. (Please find and follow me!)
(I may have mentioned this once or twice before!)

Obviously we had Christmas to face too. What a mix of emotions that has been…from sadness to anger and irritation. There was just no escape from the jolly, holly bloody music in the shops and the expectation to be ‘happy.’ So for us, all we could do is try our best to embrace Christmas for Brooke’s sake, we put up a tree and bought new decorations this year (lots of stars) and a special bauble handmade just for Harry.

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But, Christmas seems a long time ago now…what’s probably even harder is the New Year. Moving from the year 2018, a year Harry was here with us to 2019, a year Harry is no longer with us. I suppose you all get rid of your calendars and put up a new one? Many of you will see the New Year as a fresh start. I can’t throw last years calendar away, because that calendar had hope of a future for the four of us together, it had special dates scribbled in just for Harry. His nursery dates, play dates, play groups and his birthday. I will keep that calendar forever. It is these small milestones that are so hard and such a symbolic symbol of time moving on…always moving on. One moment he was with us and we were planning our afternoon, the next everything just stopped forever.

The most significant moment of our Christmas was laying our beautiful baby boy’s ashes to rest. We decided to bring him home for one last night with us, before taking him to a beautiful place in the woods, where another baby boy will be next to him. We wanted to be alone, just Lee, myself and our baby boy on Christmas Eve, to say our final goodbye. Yes, it was extremely hard, very emotional and a huge moment for us, but if I am truly honest, we both said it was more the thought of doing this part that was so hard, rather than actually laying Harry to rest. We put his ashes in a little red wooden bus, which seemed so right for Harry, as he loved the Big Red Cookie bus, that we took him on, only four days before he died…

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Harry’s ashes were just the essence of Harry, they didn’t feel like him. Harry was not a pile of ashes, Harry was a vibrant, smily, happy, cheeky and affectionate little bundle of fun, with the longest eyelashes and a smile that would light up a room. He is in our hearts and memories forever, and that is how we want to remember our boy. We all end up going back to the earth, this is as much a part of life as being born. It’s just we are rubbish as a society about talking about the inevitable. I guess for me, I have a very different outlook on death now. Harry has made me realise that it happens to us all and he has given me a very personal gift. A gift that means, I am no longer afraid of dying, I don’t fear death as I once did. I really have gained a sense of peace about the end of life (Sorry, I sound so morbid) but it’s true. Trying to understand the enormity of what has happened to Harry and us as a family is sometimes to overwhelming to think about, but Harry has shown me that there is nothing to fear and one day we will be together again. I’m not religious at all, but I am spiritual and I do truly believe that there is more.
What I find so hard to accept, is that Harry had his whole life ahead of him, he had a future and I will always struggle that he was taken too soon. Loosing a child goes against the natural order of life and it leaves such heartache and pain for those that have to find a way to carry on living…

Right, time to move on and write about something a little lighter… (but my thoughts, are my thoughts and they spill over when I’m writing!) Hang on in there….there are some positives coming up!

So, back in May, I randomly and very spontaneously decided to book tickets to fly out to New Zealand on Christmas Day! So that’s what we did. We had a mini Christmas day with Brooke, and then in the afternoon we headed off to Heathrow and boarded our first flight to Singapore! Finally arriving in Auckland on the 27th! (That’s one way to avoid Christmas!)

New Zealand! Where do I start…from the moment we arrived the sun came out to greet us! Blue skies, sunny days and stunning scenery. Even after a 24 hour flight, I think all 3 of us felt a sense of relief when we stepped foot into Auckland! My best friend, Rachel was at the airport waiting for us! When Harry died, Rachel didn’t hesitate to jump on a plane with her baby girl and fly around the world to be with me. I can’t put into words what this meant to me, I will always remember the moment she called me to tell me she was coming…I cried with relief, but also she gave me something to focus on for a few days. And when you are in the tight grip of paralysing grief, just getting through an hour and a day is literally terrifying. A lot of the early days I struggle to remember things, especially conversations, but I do remember finding it hard to move my body. It’s hard to explain, but just moving my hand or having to stand up from a chair, seemed impossible, like my body was stuck and so heavy. I think it must have been the way the shock manifested itself in me physically…

…Flipping heck…sorry, back to New Zealand!…

We took Harry with us on all our travels and adventures, we just wanted him to be a part of everything we do. We took Brooke to see the glow worms in Waitomo caves, they were incredible. It was like looking at thousands of twinkling stars. At one point we were looking at the fossils and our guide turned the lights out. He asked us to sing a song, but no one was brave enough! He wanted to prove how absorbent the limestone was to sound. So quietly I started to sing ‘Twinkle twinkle little star’ with Brooke, then Lee joined in, then the guide and then the whole group. We sang it again even louder….just for Harry. That was a magical moment, so special, personal and a a memory we will treasure forever. We didn’t tell anyone the significance of the song, we just held hands and took that moment for ourselves…

What an incredible country New Zealand is! Obviously it has the dramatic mountains, lakes, beaches and volcanoes! But, for us it’s all the other small things that really draws us into NZ. For me, it’s definitely the people, they are so full of a zest for life, genuine happiness and they just seem to have a positive vibe about them. It was very rare to speak to someone that wasn’t happy! Their positivity rubs off on you, you can’t help it! Also, it’s the outside lifestyle that really appeals to us and Brooke loved it! She ran around bare foot all the time! Loved the beaches, swimming, bbq’s and even chasing Rachel’s chicken’s off the decking every morning! We saw our little girl’s spark light up again, which was priceless… She was a little Kiwi Kid!

Every morning was a new adventure and she embraced all of it! We took her on days out to the beach, where she had a go at body boarding! We took her to visit a Kiwi and we went out on a boat to see dolphins, which she loved! Brooke even went up in a helicopter over Lake Taupo (not many 4 year olds can say that!) and then we went on another boat to see the Maori carvings, which were fantastic. We walked around the craters of the moon, visited Huka falls and many other magical waterfalls. Brooke experienced swimming in the natural thermal pools and travelled around in the Ute like a little back packer! She sang to Harry a lot, even more than at home. I think it was her way of including Harry in her holiday and adventures. She truly believes that Harry can hear her when she sings to him. So much so, that we get into trouble if we interrupt her! It’s hard to listen to sometimes, but also very reassuring and comforting for us to know that she is finding her own release for her own grief and never being afraid to talk about Harry with us.

We finally headed back to Auckland for a few days with Rach and Gerry, before spending our last afternoon up the iconic Sky Tower in Auckland eating ice-creams!

…Honestly Brooke has no fear!

And then our adventure came to an end. We had a sinking feeling and sense of heaviness pinning us down again. We knew we had so much more to face when we arrived home…and I guess we wanted to avoid coming back to so much sadness and pain.
But, we will be back New Zealand…we know we will be back one day!

Ka kite anō – See you again!

“Hurihin to aroaro ki te ra tukuno to atarangi kia ta ki muri i a koe”
Maori proverb

“Turn your face to the sun and the shadows fall behind you.”

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Claire x

A moment in time…

Time…the indefinite continued progress of existence and events in the past, present, and future regarded as a whole:

A point of time as measured in hours and minutes past midnight or noon:

…And then there was nothing but time…empty time, with no measure at all…Just Mummy, Daddy and Harry.

We took it in turns to cradle our baby boy. Cuddling him, kissing him, talking to him. We were in a place that no parent ever wants to find themselves. What do you do? How can you take in the enormity of this moment? You desperately search for a way back…just to that morning would do, just enough time to go back and change the course of the day, to change the outcome of that one moment. But, no… Fucking no. There is no way back in time. We were stuck with time ticking on, knowing that we would have to say goodby to our beautiful baby boy. Leave him in this cold, sterile, bloody hospital and walk out of here with empty arms and shattered hearts. I desperately wanted time to stop, just stop…so we didn’t have to move forward, didn’t have to stand up and leave him on his own. He looked so tiny lying on that hospital bed. I remember some of the smallest details, but I can’t remember anybody’s names or faces, I couldn’t tell you what the paramedics looked like at all. No idea. But, I can still see the laminated butterfly they put up on the curtains… just to let everyone know a child had died. Our child…I will never forget that small detail.

We were then suddenly faced with the reality of what would happen next. The phone calls that had to be made. The nurse called my Mum, but I can’t remember what was said. I do often think of my Mum picking up the phone and being told her Grandson had just died. I often think of the long 6 hour journey my Mum, Dad and sister had that night to drive from North Yorkshire to Guildford. Horrendous for them, such a long way to come, they must have felt so far away from us. Apparently, I called one of my best friends, Claire, but I have no recollection of making that call at all. The shock…just wipes your memory, like certain things just didn’t happen. But, I do remember Claire walking into the cubical in A&E and being with us. She was just incredible and so brave to be able to get us through those next few hours of time. We were then told that the police were here…What? I hadn’t even considered that would happen. We had just watched our little boy fight for his life, doctors fighting for him and us screaming silently inside, willing him to come back to us… and now we were being told that the police, social worker and coroner were here to see us. I had to go through the whole account of what had happened that week, that day, the moment I found Harry. All of it. They were very kind and as compassionate as they could be, but all I wanted to do was be with Harry. The sharpness and gravity of what we were facing was starting to hit…I was so cold, so very cold and shaking. I didn’t know what to do, I didn’t even want to move my body through the air. I was motionless and just stuck…what the hell do we do now? Why has this happened to Harry, to us….to Brooke?

So, then our home became a crime scene, we couldn’t go home. Not that we wanted to. How were we ever supposed to step back through that front door? We were stuck in that little relatives ‘shoebox’ of a room. Not knowing what to do, where to go or how to even contemplate leaving the hospital.

Family started to arrive, I remember parts of them being there, but not a lot. I do remember getting up and going to the toilet a lot though. Don’t know why, just something I kept doing. Maybe I was trying to see Harry again, I don’t know. But, it was odd, now I think about it. It was almost robotic.

Then the time came for us to leave. We had to leave that ‘shoebox’ of a room. But, it was our safe room and leaving that room was terrifying…knowing we had to walk out of the exit doors and leave without our baby boy.

I made it to the exit…I made it through the big double glass sliding doors…but then the cold air hit me and I just collapsed on the pavement, hanging onto a bicycle rack. I didn’t want to leave. I felt like I was deserting my baby. How could I physically leave my baby boy here? My Dad helped me up and virtually carried me to the car. Strange, but I remember he was parked in bay 17, because I had to walk past bay 19…Harry’s birthday. I can’t remember what I gave them for breakfast that day or calling Claire, but I do remember the car park bay that my Dad parked in?

There is so much to talk about, to write about and share with you. What happened that night, the next morning, the one after that and how we have moved through time… but for now I will skip ahead, because I know that many of you are anxious to hear what happened last week at St Georges hospital and I have had so many messages to see if we are OK. (Thank you.)

Where to begin? It’s been a rollercoaster of information, false hope, anomalies, emotions and unanswered questions…that then create more questions. We are on a journey no parent wants to participate in, but for us we have no choice. We just have to be brave and roll with the waves… as best as we can.

Firstly, many months ago now, there were anomalies found in Harrys chromosome 10, a deletion or mutation in part of that chromosome. So you can image what I did next…yep, GOOGLE. My god, google can be your best friend and your worst enemy. Especially for someone like me…who needs to know the ins and outs of a gnats arse! I can’t help it, I have to read and read….and read some more…sending myself loopy and around in circles. I came up with all sorts of answers, none of them correct, but I still read! The chromosome 10 was all to do with Harry’s eczema and allergies, but nothing to do with why he died. So that was a red herring and steered us down the wrong route…however, it did lead us to a specialist in genetics and cardiology, specifically in sudden death cases. I believe we may have never met her, if the chromosome 10 anomaly wasn’t found.

She told us that she had read Harry’s post mortem report and that there was not enough evidence to support the pathology findings of (pneumonia) – that was (pneumonia in brackets, by the way.) He had a cold….a bloody common COLD. I told the doctors that, I said we had all been battling with colds and viruses for weeks. What family with two little ones isn’t? She said she believed that it was Harry’s heart. He had been playing that morning, bringing me books, eating hula hoops and just being a monkey! Yes, he was a bit of a whinge and under the weather…a typical toddler with a cold, wanting more cuddles and not much of an appetite for his teacake. Nothing to ring alarm bells at all. The specialist was lovely, very matter of fact, but compassionate. She virtually shouted at us to stop looking for answers that we couldn’t find. We were not to blame, we could never of known. We do hear this…it does go in our heads…but in our hearts, we still look for the
‘if only’s and what if’s… Maybe one day we will find some peace with this. I hope so, it’s an agonising way to live.

Harry’s post mortem was 19 pages long. Neither of us could read it for a few months…how can you read something like that about your own baby? But, the doctors did and have all pushed back on the cause of death being – respiratory tract infection. Yes, he had RSV and other common viruses, but no sepsis and no overwhelming infection. It was a virus….a common cold. So now you know why I hate the word VIRUS. Hate it. Eventually I did find the courage to read Harry’s report. I just had to detach myself from what I was reading, but I had to do it. I had to know for myself what had been found. Not sure how any parent un-reads a report like that…it kind of etches into your mind. And…yes, you guessed it…I headed straight for GOOGLE! (Bloody google and I…we really should part company.)

We were then referred as a family to St George’s hospital for SADS screening (Sudden Arrhythmia Death Syndrome.) The three of us had many tests, including a holter heart monitor each, that we wore for 24hrs. Brooke was fantastic (as usual!) we told her we were all robot agents on a secret mission! She was happy with that!

We finally went back last week for the results. The results of Harrys molecular DNA blood tests were; They haven’t found anything obvious, but that they have found something in a DNA strand of code, associated to the genes in the heart, specifically the thickening of the walls of the heart. We have been told that this may mean nothing, but could be something…so Lee and I have had to give blood for DNA genetic testing, to see if we have the same as Harry or that, this was a spontaneous mutation that happened at conception or shortly after. Meaning we could never of known. I hope I’ve explained that OK, it was hard to understand ourselves. We are waiting for it all to be written up in a letter.

Does this make it easier or harder to accept? Not sure…at this stage, I am just relieved that Brooke is OK and that we haven’t hit a brick wall. The Professor that spoke to us (as a professional and a as a Father) said they will do everything they can, to try and get us an answer. He also reassured us that he doesn’t see enough evidence in the PM, that Harry died because of a respiratory infection – a cold.

As for Lee and I, no abnormalities came back for me (not physically anyway! Mentally…I’m sure that would be a whole new ball game!) But for Lee, they have found that one side of his heart is very slightly larger and that he kicks out a few extra beats. We are trying not to worry about this too much, but obviously it is another concern and could provide more answers in the future…(or more questions, as the case seems to be with us.) We are waiting for a cardiology MRI scan now and results from our DNA tests.

Nearly there…

We also signed a form to allow us to participate in a research study, to use all our DNA to help find and discover more answers in the future about SUDC and SADS. Of course we signed instantly. If Harry’s life could potentially help the medical world and save future lives…Then YES, bloody YES…of course we signed. 

“And finally; To our darling baby boy Harry. We are trying Harry BoBo, we really are trying. Trying so hard to find out what happened to you. We will always fight for our children, we will always be your Mummy and Daddy. This is one way we can carry on being your parents and actually do something more for you. We will fight for answers, even if that does bring up more questions…we will #keepgoing Harry.
We can promise you that.”

Love Mummy. xxxxxxx