Our last goodbye

I just had to write today, I have had this uneasy feeling all week as we build up to the anniversary of Harry’s funeral. I took my laptop into town, thinking I could hide away with a coffee and write, but I just couldn’t do it, I knew that I would just cry my eyes out…so I’ve come home. (And yes…I am crying my eyes out…) Maybe that’s what I need to do today, maybe it’s been bubbling up and needs to release.

This time last year was my last day with Harry, my last chance to hold my little boy in my arms and have that physical and nurturing touch with him. Family came with me and we read stories to him, whilst I cradled him, kissed his cold little lips and held onto every last moment I could. Finally the time came, when I had to let him go, drink in that last look at his beautiful little face, with his gorgeous long eyelashes and sandy, golden hair. He just looked like he was asleep, like he had been kissed by frostbite on his little cheeks. He was wrapped up in his snuggly star blanket, I had bought him before he was even born and surrounded by his favourite toys, stories and photos…and even his toothbrush, as Harry loved cleaning his teeth. He was wearing a beautiful sky blue jumper and trousers covered in stars. He still had the little tattoo of Thomas the Tank engine on his leg from our day out over Easter. A lovely friend also made Harry a beautiful little hat with stars on and a little skirt to match for Brooke to wear, which we will treasure forever.

I had to dig as deep as I could possibly go, to find the strength to hand him over one last time and say my last goodbye. I remember walking out of the funeral home, and my legs collapsed from under me, I don’t know how I walked away from him that day, but I had no choice…I had to keep moving through time and hope everyone else would carry me along with them.

The next morning, the day of Harrys funeral. I was all the emotions you would expect, but I wasn’t crying… until it was was a few moments before I knew Harry was about to arrive and I was in the bedroom with my sister, trying to get ready, but my hands wouldn’t stop shaking. I didn’t want this to be happening, I didn’t want Harry to pull up in a hearse and see his little white coffin…I didn’t want any of this to be happening and felt an overwhelming sense of panic. But, one thing I have learnt a year on, is you cannot stop these things from happening…it just does, and you have to deal with them as they come. Time moves forward…with or without you.

Harry arrived and Lee and I held hands and were the first to walk out to be with him, we had to, we are his Parents and he needed us for his final journey. I will never forget seeing his coffin, I will never forget that drive. Lee was so brave and carried Harry, along with both his Grandads into the service, whilst my brother in-law played “Twinkle twinkle little star” on his guitar. I walked behind, and I can’t even remember who I was with, but I remember screaming out and hugging my best friend. I sat with Lee, with my legs and arms wrapped around him, I just couldn’t let go of him…I can’t even tell you who was sat the other side of me now. I was so focused on Harry and getting through the service and listening to the words being said by our celebrant.
Lee and I both decided we wanted to write our own goodbyes to Harry, along with a beautiful poem written by our friend Lisa Davies. We were determined to find the strength to stand up and read them ourselves. I haven’t read or shown anyone else since that day last year, but felt I wanted to read the words again today and share them with you all.

Dear Harry, love Mummy

Why have I lost my precious one? My eyes have cried and cried
It makes no sense, so hard to bear, why is it that you died?
Why is it that you left me, why have you gone away?
I miss you so, so much, and more than words can say
I just can’t carry on like this, I’m so alone without you here
And every time I think of you, my heart then cries a tear
This world just isn’t fair and I just don’t understand
What I’d give to touch you and just hold your precious hand.

‘I love you so, so much my baby blue eyed boy. You had the longest eyelashes,
the brightest of smiles and cheeky little laugh.
I loved the way you wiggled when you ran and got so excited, you kept falling over your own feet.
I loved the way you frowned and threw your food on the floor, we still have the splatter marks on our kitchen wall!

I loved the way you cuddled me, you held on so tight. I will cherish every moment we had together, the fun and sleepless nights. I wish I could wave a magic wand and make everything alright, if I could my baby boy, you know Mummy would in a heartbeat.

We will try our best to live our lives for you. We will one day smile, look forward to tomorrow and try our best to carry on. Sleep tight my baby boy, I know Grampy will hold you tight. Cross over that rainbow and be the brightest star in the sky. I love you so, so much my darling baby blue eyed boy.’

Dear Mummy, love Harry

I love you Mummy, don’t worry, I know this isn’t fair
I know you really miss me and kissing my soft blonde hair.
But, I’ve had to leave this world, much sooner than we planned
I want to help you grieve and to help you understand
Although you cannot see me and touch me everyday
I’m with you all the time and I’ll be with you all the way
I’m always going to be there, I’ll hold you when you weep,
I’ll cuddle right up next to you, when I see you sleep
I’ll walk with you through life, I’ll join you when you sing
I‘ll send you love and comfort and the good times I will bring
So, don’t think of me as gone, I’m always, always here
And in so many subtle ways, my love it will appear
So, keep going Mummy through life, together we will be
Our love, our souls, our hearts, our dreams

Joined as one

Just you and me x

That day, was the second hardest day of my life. But, I am so proud that Lee and I managed to say our own goodbyes to our little boy. We were surrounded by close family and friends that all knew Harry and were there with us to honour his special time on earth. The service was over and everyone slowly left. We stayed with Harry for a little longer, then walked out the doors. Family were looking at the flowers, but for me it was too hard to stand there, knowing Harry was inside on his own. We needed to go, but it was all happening too slowly and I felt a rush of panic again, and just ran back inside to hold onto Harry one last time, I just hugged his little white coffin, tears falling onto his silver name plaque… I couldn’t let him go. My Dad, came in after me, and helped me pull away… but I said we just have to get in the cars and go, we can’t stand outside. So we did, we all just left and I looked out of the window to catch the last glimpse of Harry, before he was gone out of sight. We were driven back to Haslemere, to Hemingways, a local cafe in town, this was the last place I took Harry and Brooke that Friday morning for a teacake. Hemingways have supported us from the very beginning and so generously offered to host a memory gathering for Harry after the service. I have only recently found out all the staff volunteered their own time to help cater and serve our guests. There are no words to thank them all enough, it was one part of the day we didn’t have to organise or think about, they just did everything for us. So many people came, and wrote little memories of Harry on a little star for us to read one day and keep forever and to share with Brooke and now with our precious rainbow twins one day.

Brooke joined us for the memory gathering and at the end we went outside and all held hands. Brooke, Lee and I stood in the middle and we all sang “Twinkle twinkle little star” and then released blue and sliver star balloons into the sky… a magical moment we will always treasure with friends, family and our beautiful little girl.

I love you Harry, and miss you every day. I can’t believe it’s been a year already and the hurts not gone away. It will never go away…

Mummy x

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.

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…

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…

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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!

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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.

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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!

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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!

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“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.”

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

Our last week together

I feel I have to write about the day we lost our precious boy. I replay the day over and over in my head, like I’m on a treadmill with nowhere to run. It’s a cruel trick of my mind, constantly looking to find a loop hole to change what happened. I think it’s the shock and incomprehensible finality that there is nothing I or anyone else can do to change the outcome. Harry died. It’s taken me months to be able to write these words or say them out loud. Our beautiful baby boy died on Friday afternoon, 6th April, 2018.

It was Easter half term. Harry had only been going to Nursery, for about 5 weeks he went with Brooke every Tuesday. It had been so long since I’d had a day too myself, I felt very lost, the house was so quiet…it just didn’t feel right. Lee and I used to compete over which one of us got to go in and collect Harry first, because the welcome he gave us was heart melting! As soon as he spotted one of us, he would get up and run over, sometimes with a little cry and arms out. He was the most affectionate little boy in the world. All the nursery girls adored him and often said he gave the best cuddles and had such a delightful nature, gorgeous smile and wicked little laugh! I miss his cuddles so much.

Harry’s first day at Nursery (with “catty” his favourite toy and comfort teddy!) Brooke’s since adopted “catty” and looks after him for Harry.

Harry and Brooke both had mild colds, we were all ‘bat and balling’ viruses around our house between us all. It was that time of year when the doctors surgery was full of coughs, colds and poorly little ones. They just pick up everything going at that age…and we all said “it’s good for them to build up their immune systems.”

Lee went away for a night with friends to watch a boxing match in Cardiff, so I was home alone with the kids. They were both a bit off colour, but still playing and making a mess! Lee read Harry a story that morning, I adore this photo of Harry idolising his Daddy.

Brooke and I had a “sleepover” together, we painted our nails, had sweets, popcorn and a film, it a lovely girly evening, while Harry was asleep in his cot.

Easter Sunday and we waited for Daddy to come home to do an Easter egg hunt. I had bought Harry a dairy free egg, because of his allergies and lots of little toys for them both. I loved making days special and creating fun, family memories together.

Easter Monday was a typical UK bank holiday...it was pouring down! But, we had planned to take them both to see Thomas The Tank Engine, and that was exactly what did. I am so pleased we went, we had a fantastic day out together. It was our last family day out with Harry and we will treasure that day for as long as we live. I find seeing Thomas The Tank Engine so hard now, even hearing the theme tune makes my heart jump and tears sting. Maybe one day I will find comfort in seeing Thomas again…

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Over the next week, they both went to Nursery on Tuesday, came back starving as usual! They sat together, enjoying hot cross buns (Harry always finished Brooke’s!) He was a great little eater, despite having food allergies. But, he never missed out, I made him cakes and meals that looked just like ours (without the dairy, eggs and nuts.) I didn’t want Harry to ever feel any different or to feel he was missing out in any way.

By Wednesday, I didn’t feel well, I think I had whatever virus the kids had, so we had a day at home. They utterly destroyed the lounge…it was quite special! Even Daddy came home and said he thought it was probably their best work!

Thursday is usually playgroup, but it was the holidays, so everything stopped. But, we needed to get out for some fresh air. It was a lovely day, so we went to the park…twice! We had ice creams (Harry had a sorbet) but he wasn’t really bothered. But he still wanted to run about with the other children…he thought it was great fun!

That evening, he was happy and running about with Brooke. He got ready for bed happily and then we surprised Daddy, who was working late. Normally Harry would be asleep in the car and Brooke would be chatting away. But, that evening it was Harry chatting away…and Brooke was asleep!

Friday morning and Harry was sat up in his cot waiting for a cuddle. We stayed at home for the morning, I still didn’t feel great, and Harry was a bit under the weather. He had a bit of a cold, was irritable and cuddly, but he was still bringing me books and happy enough playing with Brooke and eating hula hoops! Brooke was a bit tearful, don’t think she felt 100% either, so I called Daddy and asked if he was near by. He said he was actually nipping back into Haslemere, so he would pop home. Harry was trying to make “Alexa” talk and gave Daddy a big cuddle. Brooke cheered up, so we went out for a teacake, as I needed to go into town for a few things and I thought we could all do with getting out the house for a while.

Harry wasn’t happy to sit in his highchair, he just wanted cuddles, so I knew he wasn’t feeling great. He was just like any other toddler at 20 month old, acting up a little and being a fuss pot with food. But, he was happy to stand in a chair next to me… and when I asked him to sit down….”No, No, No!” was Harrys response! “No” was Harry’s new and favourite word! He then decided he wanted to bring me magazines to read! Usually I would have taken a photo, but for some reason, that day I had left my phone at home. I am so irritated with myself that I did that, I don’t have a photo of Harry on our last morning together.

I put Harry in his pushchair and we left Hemigway’s coffee shop, he looked a little dazed, but it was past his nap time and I asked him if he was tired, he ‘nodded’ and just looked like he wanted his nap. He had always liked his sleep and didn’t like to miss out on his afternoon nap. So, I whipped around town quickly, as I wanted to get him home. He was nearly asleep in the car, but I caught him just in time. Brooke wanted a drink, but I said, “just wait a moment and let me put Harry to bed.” So I took him upstairs, stripped him down to his vest and popped him in his grow bag. We had a cuddle and I put him in his cot. He had a little grumble, and I remember raising my eyebrows as I went downs the stairs…thinking to myself, “I thought you were tired Harry!?”

Brooke had swimming at 3, so I felt guilty that Harry wouldn’t have a very long nap, but I thought any time would be better than no sleep. I used to do a lot of baking and a friend had asked me to make meringue kisses for her daughters birthday. So that’s what Brooke and I did, we baked meringues… I haven’t been able to bake again since that day.

At just after 2:35, I said to Brooke, lets go and wake Harry, we need to get ready for swimming. Brooke enjoyed waking Harry up, she loved him so much and they shared a room together. We went into their room and I expected Harry to stir, but he didn’t. So I said “Come on Harry, wakey, wakey.” But nothing. Something just didn’t feel right…I then noticed how flat he was, completely face down into the mattress.

I felt a surge of terrifying panic flood through me. I touched him, he didn’t feel the same, and as I rolled him over I could see his face and lips were blue and he felt cold. That moment will haunt me for the rest of my life. I screamed “Nooooo Harry, No.” I picked him up and ran down the stairs. I had been on 2 child and baby first aid courses and somehow I remembered that I needed to get help before anything else. I grabbed my mobile from the kitchen table and ran to the neighbours banging on their door and screaming. Poor Brooke was terrified and running after me, she wanted to help. I had already dialled 999 and through my phone at them to help. My initial thought was that Harry was choking. I looked in his mouth, slapped his back, thinking something was maybe lodged in his throat. I started CPR on my own baby boy.

I really thought we were helping him, as the colour returned to his face. Time just stood still, it was only minutes before the ambulance arrived, but it felt like so much longer. What was wrong?….I had no idea what had happened? Harry had only been in his cot for 50 minutes, not even an hour. What could have possibly happened in that time?

The paramedics worked on Harry in the ambulance, I just sat and watched. I was in shock, I couldn’t believe this was us…this was actually happening to us. I didn’t let myself think that he wouldn’t make it. I just believed that they would save him. I watched them work so hard on his little body. I watched as they drilled into his leg…I watched as another ambulance crew arrived and jumped in with us. I knew this was serious, but I still couldn’t let myself think that this wasn’t going to be OK. It was our real life nightmare (still is.) The sheer panic and heart wrenching stabbing physical pain that I felt was too overwhelming to process. I couldn’t process any of it. I spoke to Lee very briefly, and said “you have to leave now, you have to get to the hospital…Harry isn’t breathing.” He dropped tools and got to Guildford A&E before us. Lee said he could hear the ambulance coming…he must have been terrified.

We arrived and I fell into Lee’s arms. “His heart has stopped Lee.” A whole team was waiting for Harry, I thought finally we are at hospital, they WILL SAVE HARRY, they will see that something is wrong and he will be OK. We were encouraged to sit near Harry, they wanted us to see that they were doing everything they possibly could for him. We watched as they tried to save his life. They did a pulse check every 2 minutes, but it felt like every 10 seconds. At one point we heard a nurse say, we have a pulse…we had a glimmer of hope. But, that faded within a couple of seconds. No pulse. They tried and tried for our baby boy, but I think we knew he had been without oxygen for too long. Then came the words from a consultant… “I’m sorry, it’s catastrophic.” They all agreed to stop. Harry died.

Lee cried instantly, he just cried for Harry. But, I just sat there numb, cold and shaking. I couldn’t cry, I couldn’t do anything. I was so angry that I wasn’t crying, where were my tears? Why am I not crying for my baby?

But I just sat there numb. This wasn’t happening. Not to us, not to Harry. This happens to other people, not us.

Nope…NOT US. Not our precious little Harry BoBo. x