What’s not to love about Rainbows…
They are bright, colourful and bring hope, even when skies are stormy. I would also go so far as saying now, that they are even magical – they bring my baby boy back to me.
In 2016 we finally fell pregnant and immediately felt very lucky. My pregnancy was a doddle to be fair (bar a splash of gestational diabetes) and every scan we had our baby boy was described as “perfect.” Mid-march 2017 Harvey was born via elective caesarean following the obstetrician’s advice due to his predicted “largeness” – he arrived, chunky, a healthy 9lbs and perfect. Blonde haired, blue eyed and so beautiful. Our obstetrician who delivered him described him as – Perfect.
Harvey was always a very contented baby but he struggled to maintain and gain weight, which swapping to combination feeding seemed to temporarily sort. However, at 10wks old differences in his development were apparent, his little arms would move very sedately and he’d only wiggle his feet and occasionally move his legs – unless it was bath time then he would kick! As first time parents you have no real idea what is “normal” – there is no manual after all, and we were grateful for how chilled he was! However, as the weeks went on, and we were still having regular health visitor checks it became apparent that something wasn’t right. GP & Paediatric Consultant appointments followed, which by the end of we knew something was seriously not well with Harvey and the hope that he “just needed to catch up” dissolved. Our perfect world was about to be thrown up in the air and tossed about in the storm until we landed again with our devastating future ahead.
Within days Harvey was admitted to our local hospital for tests, not just any run of the mill tests, but horrific tests that made him cry like he had never cried before, cue Mummy & Daddy crying lots too!
Seeing your tiny 12wk old baby in so much distress is agonising. Even a blood test, that there were several of, were traumatic for his tiny veins. We do however, have a beautiful picture of him during a chest xray. He was placed in some sort of foam brace and promptly fell asleep so peacefully with his arms splayed out displaying his t-shirt which read “It’s my way or the Highway” – too right son!
Despite those tears, Harvey remained happy and content and knew how to charm the nurses and consultants with his smiles whilst we were resident for 9 days. We were then allowed home, without a diagnosis as we had to wait for the genetic screening due a week or so later. We left hospital knowing that we were however, about to face our fears. The night before we all returned for the diagnosis meeting we did what our consultant very cleverly told us not to do – consult Dr Google.
We knew from what we read what we were going to be told the following day, through my tears I said to Harvey’s Daddy “He’s got it hasn’t he.” His Daddy couldn’t speak just nodded as his tears fell too. Our hearts breaking as the tornado swept us up, ready to spit us out the following day.
During that diagnosis meeting we were cool, calm and collected – even when we were handed the piece of paper and asked to read to ourselves “Harvey has SMA – Type 1 a degenerative neuro-muscular disorder” We didn’t have to be told (as we already knew) that Harvey’s life was limited. The tornado’s speed increased as a barrage of information was thrown our way – we had two years tops with our beautiful boy.
As we left that room and made our way to the hospital café, we started to digest how our future was suddenly looking very different. Our heads spinning as Harvey smiled up at us, we vowed there and then to make the most of whatever time we did have with him, he would know nothing other than love & happiness. First stop – a 4mth birthday party just a few days later!
From this point on we were in touch with and occasionally used the facilities of our local children’s hospice, Rainbows in Leicestershire. Without this amazing place and the people that work there we wouldn’t have survived, they became integral in the making of some beautiful family memories together and gave us the support after Harvey had left to help us to continue living a life worthwhile.
Time gave us just 4 more precious months with Harvey, where we fast forwarded life and went to the zoo, a monkey park, the seaside, swimming, held 3 birthday parties for him and also had some as equally precious family time just simply being together at home. There were tough times during those 4mths, days that haunt me from time to time, but Harvey continued to take it all in his stride and astound us with how much he chatted, giggled, laughed and of course smiled – his smile & sparkling blue eyes touched everyone who met him.
At 7 mths old Harvey decided enough was enough and he died at home with us. Nothing ever prepares you for that day, even when you are given forewarning. I guess you think it will be a long way off but really you have no idea when it will happen and you have no control over it ultimately. We can take comfort that we had achieved what we had set out to do and that was to give Harvey the best little life and create some magical memories together that will last our lifetimes.
We spent two special weeks at Rainbows with Harvey before his funeral and we truly learnt how amazing a Children’s Hospice is. We were given a room purely for Harvey and we spent as much time as we needed with him. We were guided through the process of arranging our child’s funeral, something no parent should ever have to do. It was a process that believe it or not we made fun in parts and with the help of Rainbows staff and their unquestioning support, nothing was impossible.
On a bright crisp October day we said goodbye to Harvey, the sun shone, we asked our gathered friends and family to sing “If you’re Happy and you know it” (complete with actions of course!) which was a favourite song of Harvey’s and we released the most amazing bright and colourful array of balloons into the sky. It was - perfect.
And then we began the lifelong journey of Grief . . .
Two months later we both agreed to start running. I had always been sporty through school and into my early 20’s, but mainly in team or individual sports – not athletics, and distance running was my least favourite by far! Harvey’s Daddy hadn’t run since school, where ironically he had taken it up with a friend to help his friend deal with the untimely death of his Mum. Of course, Harvey’s Daddy was a natural and we quickly realised that his 6’2 legs were leaving my 5’8 ones well behind, so solo running commenced. We sensibly followed the Couch to 5k – and both chose the comedian Sarah Millican as our “coach” – who I’m not convinced has ever actually got off the couch!! I love it when she rally’s you on though and says “Well done Pet!” Despite Harvey’s Daddy leaving me for dust in training – I actually completed the 9wks course before he did – not that I’m competitive or anything - champion!!
We continued to run for several months and completed a 5k fun run just a few days before the first anniversary of Harvey’s death. It was a Charity Bubble Rush with friends and family raising just over £3,500 for Rainbows Hospice.
Since then I have had an on/off relationship with running, but Harvey’s Daddy hasn’t stopped. I’ve currently been running again, since February this year, when I completed the C25K in 5 wks, so we could start Harvey’s 3rd birthday in a positive way by completing a 5k run. Since then my distances have increased – when the legs and cardiovascular feel like it! Something I never imagined possible.
One thing is absolutely certain and that is about the mental & emotional benefits of running (along with the physical) that we have both benefitted from whilst we work through our grief. For me it gives my head some space, and dissipates any anxiety build up. It’s some time out of life as we now know it and I go into a different zone, rarely thinking about anything. I run to music (drowns out the sound of my heavy breathing!!) even though I’m sure I don’t actually “hear” half of the songs!
I made a playlist from songs when I first started in December 2017 (which I’ve added to since) with songs that give me the umph to keep going and shake my fist at the world for being so cruel to us. In amongst those there is a song that I have always associated with Harvey and I since he died. It seems to always start when I need that extra boost to keep running! I have a picture of Harvey & I sharing a special moment in the hydrotherapy pool at Rainbows as the playlists profile, so I always see it just before I start to run and I called the playlist – STRONGER. Running has definitely helped me all round regain strength to face whatever grief and our loss throws our way and indeed whatever life has challenged us with since.
As well as Harvey’s Daddy also experiencing all of the other benefits as I have described, I also know it is his time out where he talks to Harvey. It’s his special father & son time, where they work through things together and plan the day. I’m glad his 6’2 legs left me behind so he alone can share those miles just with Harvey.
A year ago I created @harveysrainbow on Instagram. Although I was 22mths post Harvey dying I was starting to struggle with a real feeling of the loneliness that loss & grief can bring about. Life obviously continues around you and for the majority of others around us their lives had long returned to how it once was, ours hadn’t and wasn’t going to. I knew I had reached a point where I needed to find support and find others who my broken world may just fit more comfortably with. The account name was an obvious one, not only with our link to Rainbows Hospice but also the fact Harvey has sent so many rainbows when i/we have really needed to see them, and to other’s too who believe in their magic. He was such a bright and happy baby, two things that a Rainbow evokes to me and each and every one I have seen has given me a lift that I have needed.
Grief is a dark, difficult and exhausting journey that I believe only becomes easier because you become STRONGER. By creating @harveysrainbow I also wanted to shine a positive light on this journey, to give others a light in the darkness and show that there is a life to be lived after you devastatingly lose your longed for child – that there is HOPE.
If you’d have told me my life was going to change so majorly and so quickly in the previous 18mths before Harvey died, that I was going to leave my front line Police Officer role, become a Mummy, become a Bereaved Parent and lose the person I once was – would I have done it all to spend those precious 7 months with Harvey – you bet I would.
Whilst we will always feel cheated, we will also always feel so very grateful for sharing those 7 months with Harvey and together as a family. They were simply magical and our memories of the special times we shared before and after his diagnosis will remain forever. We are also aware how lucky we were to have him and of the heartache of other’s who haven’t yet experienced the joy of being a parent.
I was thrilled to be asked to write a blog post for the Rainbow Running Club, Lucy was one of the first people I connected with via the Gram. Rainbows, Running and a Club where others just “get it” – a perfect combination and furthermore, like many bereaved parents do about their own children, I love nothing more than talking about Harvey. Lucy also supported my love of crafting and fundraising for Rainbows Hospice by purchasing some Rainbow lapel pins I make by hand out of clay. You may have seen her wearing hers from time to time on a long run!
Finally to start where my post began, what’s not to love about Rainbows . . .in their warm colours I believe they bring comfort, they bring calm and they bring HOPE. I live by a mantra, even on the days I really don’t feel like it or want to, as without it I wouldn’t have a chance of seeing a magical Rainbow:
ALWAYS LOOK UP!
You can find out more by following Charlotte @harveysrainbow