Charity; compassion, passion and humility

Ok so many of you who follow me on Instagram   (@mommaupnorth) or on here will know that I am a great one for charity, to point that I am a founding Trustee of The Rainbow Fun, Harrogate Children’s Charity, so when I was asked once again to speak at the Variety, The Children’s Charity Crystal Ball Event I was both excited but very nervous too.

When you spend most of your time questioning what you, why you do it and if you are actually any good at it, standing up and speaking from your heart about personal matters in front of 500 people it is pretty daunting. So, why you may ask did I agree ( again) but this time on my own, well this is why; compassion, passion and humility. Continue reading

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Cheated by death, again

Arjun did not die ( this time). He fought through and survived, but not for long. I think we had lulled ourselves  into a false sense of security again, he had recovered, he always recovers so what was all the fuss about? The reality is that this is not how anybody would be living their lives, living each and everyday watching out for signs of deterioration and death; waiting to see if he has changed in his colour or breathing pattern, always on high alert in the eventuality that I will be called away from work ( yes, I work), or a day out with the girls or, family function will be cut short so we can attend another emergency.

It is not fair; it is not normal.

Well, only 48hrs after the first episode Arjun was taken ill again, his body had started to shut down but this time he was at home. Continue reading

Children hospice Week Special; Path to Palliatvice Care

Path to Palliative Care

In a recent post of mine I tried to dispel some of the myths surrounding Palliative Care, its definitions and of course the impact of these on family life. This time I must admit writing this article seems easier however more traumatic, you see the path to palliative care has not been easy, for the most it has been tough. Why? Largely due to some of emotional highs and ‘official loop holes’.

It was when Arjun was around four that we first were introduced to Martin House Children’s Hospice. It was a shock to say the least. Our first reaction I that of disbelief ‘our son’ would need to go to a ‘hospice’. Understandably,   when you hear the words ‘hospice’ our reaction are of death, of end of life, sadness, suffering and general solace. This is a myth, these are the emotions and preconception we have of adult hospices, I’m not going to lie, these were our misconceptions too. Children’s hospices have quite a different feeling. They are about empowering families to deal with anything that they will face on their journey through palliative care and ultimately end of life. Continue reading

Palliative Care

There are occasions in everyones lives where you are forced to take difficult decisions, knowing that either choice maybe wrong and will leave a scar; neither choice is suitable.
We have been forced to make heart breaking decisions about Arjun’s care from Do Not Resuscitate Orders to Limitation of Treatment Agreements, why ? Largely to prevent there being difficult decisions being made when we are at our most vulnerable, emotionally aggrieved and mentally exhausted.

Continue reading

Siblings; a letter to my brother

A letter for my brother
The last 8 days have been terrifyingly heartbreaking. I have watched Arjun writhing in extreme pain and my girls crying with fear of not understanding what is happening to their brother. However,It was not until I was looking through the girls writing pads that I stumbled across this to truly understand what they had been feeling; a letter to their brother.

Dear Arjun


I love you more than anything else in the world. I like it when you are laughing and giggling because it makes me laugh and everybody else too. You’re my best brother and no-one can replace you ever. 
Continue reading

‘Congratulations! You can take your baby home!’

Bringing Arjun home was so frightening. We were allowed to take hime home on a ‘phased’ return. This is when you bring your baby home for SCBU intermittently so that you and baby can acclimatise to being home especially of your baby is on oxygen, tube fed or has had come other medical concerns.

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When we brought Arjun home on this ‘phased’ return he had still got the NG tube in his nose. It was so scary. We were taught how to feed him via a syringe, held at a certain height above Arjun so that gravity would move the milk directly into his stomach. You had to be really careful, hold the syringe too low and the feed would not work; too high and you void drown his stomach which would result in him vomiting (he suffered from reflex anyway). Arjun’s feeds had to be thickened with a special thickening agent called ‘Tick and Easy’. It was like wall paper paste by the time you had added it to his feed. Continue reading

The black dog ; depression

Winston Churchill talked about his black dog. The way it would sit in the corner of his room quietly staring at him until one day out of nowhere it would pounce on him and sit on his shoulder or at his heels, refusing to move. The black dog, cloud, void whatever you want to label it, it is depression. A deep down pain that consumes your every breathing moment, seeps into your muscles, grinds at your bones and steals your appetite. Depression kills your soul from within. No one sees it, no one can heal it and at times no one believes it.

The world around you spins at its normal pace but your world slows down, similar to a black and white movie where everything becomes silent and only your inner-mind consumes you. You become deaf to everything positive. Every time you blink a tears seeps through and stings your heart.

My depression was harrowing. Continue reading

Mother’s Day in Hospital

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On two separate occasions I have spent Mother’s Day in hospital and I can tell you it doesnt get any easier. It was much more harrowing when Simran was in Neonatal Intensive Care fighting for her life. Simran was born premature at 29weeks weighing a mere 1lb 11oz. She weighed less than a bag of sugar. She was in hospital for three months in total. Arjun was in SCBU for my first mothers only four hears earlier.

Mother’s Day

My first Mothers Day was painful, I never imagined stealing gentle touches through a glass wall, fighting my way through a tangle web of wires, bleepers and feeding tubes, I never imagined sitting in a feeding chair watching my precious newborns chest heaving up and down to catch an artificial breath. To sit in silence watching; mutely praying for a sign that they would flourish, that they would survive to stand in the glistening summer sun and inhale a deep breath of air filled with freshly cut grass and blossom. I recall sitting for hours patiently by their crib side wishing that Arjun would make a sound or that Simran would open an eye to see me. The irony is that it was only a weeks before Mothers Day that we were informed that Arjun was blind, but with Simran we still did not know. Internally my heart was in agony. All I wished was that the gift of motherhood bestowed on me was not in vain, that it would not be snatched away from me like the cruelty of war; my newborns would be strong enough to fight on in their personal battle fields like the soldiers they are. There were times when both Simran and Arjun were almost defeated (on more than one occasion) but both stood up to (literally) live another day ; both still here.

I know that Arjun still has his battle and that at times desperation and despair consumes us as parents, but, on Mothers Day each year I hold him tight in my arms, against my chest so that he can hear my heart beating in time with his, in the hope that he knows that I am his mum and that I am always here for him, even on the day he takes his last breath, in my arms and not alone. I will never stop silently praying that one day a miracle will  ‘make him better’, or that when he dies his soul will rest in peace, nor will I never not cry on Mother’s Day for the son I have lost as I hold him in my arms.

A Mother’ Day gift

In NICU and SCBU the staff do their best to make Mother’s Day special. There is the special time you are allowed an extra lengthy cuddle with your baby; a moment treasured forever, moreso when your baby is still hooked up to wires, cables and oxygen (CPAP). I have two extremely cherished momentoes ; homemade cards with their tiny footprints.

The nurses had taken the time and patience to paint and imprint on to cards their precious prints.  It was one of the most treasured memories and tokens I still have safely wrapped away in their memory boxes.

It is for this reason that I have take to trying to deliver something to SCBU and Children’s Ward at Harrogate Hospital on Mother’s Day when I can. This year I delivered flowers donated to our charity ‘The Rainbow Fund’ by Asda.

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http://www.therainbowfund.co.uk
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Simran and the nurses @Harrogate Hospital

It is a privilege and honour to do this as well as having the opportunity to speak to mums on the ward who will spend Mother’s Day sitting in the nursery wishing that their newborn will be well enough to go home with them for the first time.

So, today on Mother’s Day, I want to tell all those mums in hospital sitting by the side of their newborn that all will be OK, that your journey will be unique but it is your journey and you will find your own way through it, that no matter what, your bundle of joy will lead you to the light and that you will all flourish in your own way.  So wear your badge of motherhood with pride and honour.

You are all amazing.

LAST MINUTE MOTHER’S DAY (in and around Harrogate)

We are very lucky in Harrogate to have some amazing local companies who can offer some great Mother’s Day gifts. Here are my Top 5 gift  last minute ideas for this year.

No 1

My favourite is ANY fragrant Candle from THE HARROGATE CANDLE COMPANY. This exquisitely handmade candles are beautifully scented, they only contain blends of pure essential oils (rather than synthetic fragrances) which have gone through rigorous testing and sampling to ensure that each fragrance is as pure and rich as possible.

They burn for hours and are definitely a mist have for any home.

No 2

H2k of Harrogate is another Harrogate based beauty and skin care range. I had the pleasure of being gifted a PEDICURE for my birthday last and I would highly recommend their range. Currently they have a mother’s DAY deal.

As a special treat, we are offering you a FREE 200 ml Calm Face kind & soft cream (paraben & Sulphate free) on all orders over £30.00 !!

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No 3

Why not take your mum to FODDER for lunch or brunch. This is real favourite for me and my family. Fodder have an amazing Mother’s Day lunch, ranging from a full Sunday Lunch to a sharing platter; not to mention their delicious desserts and pastries.

No 5

If your mum is a real fitness fanatic, or just enjoys the little luxuries of a neat fitting pair of leggings, then why not head over to FIT HARROGATE on Cold Bath Road.  The best bit is you buy her a gift voucher and she can shop to hearts content.

‘He will remain in a vegetative state for the rest of his (short) life’

‘He will remain in a vegetative state for the rest of his life and you will be his sole carers’

We look at the doctors face, blankly.

‘Do you have any questions?’

We say nothing.

Following 24 hrs of sheer horror the nightmare then escalated to an apocalyptic tsunami.

Dav had wheeled me down the long disinfected pungent corridor of the hospital to the Neonatal Intensive Care Unit (NICU) at Leeds General infirmary to visit Arjun as he was hooked up to life support machine. We thought he was going to be ok. We thought at this was just routine after such a difficult birth and that he would be discharged once the excess fluid (hyrdrops) had been drained. We were so wrong.

It soon materialised that he had had a major brain injury. His brain was drowning in blood. He was literally being killed internally by his own organ; his brain.

A few medical facts; Hydrops occurs in a small percentage of the worlds population, with only 15% of those born with hydrops actually surviving. Hydrops is when the tissues in the body is filled with fluid (oedema) ; the body appears to be like a water balloon, waiting to be popped. The only thing is, this cannot happen, instead the fluid either is drained or your organs drown in the fluid.IMG_0529 2.JPG

Non-immune hydrops is the more common type of hydrops. This type includes all other diseases or complications that may interfere with how your baby manages fluid. This is what Arjun was diagnosed with. His prognosis was not hopeful.

Arjun’s body was drained.

It is unclear whether he had the brain injury prior or post birth, or once the fluid had been drained.

His head circumference expanded over the preceding 48 hrs as the blood and fluid from his brain haemorrhage consumed his brain cavities destroying the grey matter like maggots eating away at an apple. His fontanel bulged like a water balloon, to touch it slugged and squelch in an inhumane manner, all the while Arjun fought for his life and every breath whilst the life support machine pumped away. I will never forget the beeps, flashing lights and alarms of NICU. The manner in which the nurses and doctors ignoIMG_0531.JPGred some of the beeps whilst as an onlooker you panicked and frantically searched for suitable explanations for all the flashing lights and noises. I suppose for the nurses and doctors these became like white noise; for parents they were deafening sirens. It soon became clear that everyday Arjun was deteriorating, each brain scan revealed further damage. There was nothing that could be done.

It is pretty amazing how the protective mechanisms kick in. It was even more remarkable how Dav took the reins and protected not only Arjun but me. I was mentally deteriorating. My body could not cope with the changes, the surgery and the hormonal imbalances, but to exacerbate the feelings further I was falling deep into a depression that would consume our lives for ever. I began to reject Arjun, my motherly instincts were nowhere, all I could do was the physical, change his nappy, cleanse and bathe him. I felt very much like a failure, that somehow I had caused Arjun’s fatal injury and that all I was good for was pumping my breasts for milk.

By now I was feeling more and more isolated, unable to truthfully reveal my inner pain and dying emotions. The black cloud had truly taken hold and I was alone with it.

Meanwhile, Arjun  was slowly weened off life support and made his journey through each step out of The Peter Congleton Unit at the LGI. It was a little like graduating. Firstly he moved from NICU to HDU then to the nursery section.( I make this sound so easy and pain free but it wasn’t, so many medical issues had arisen that I am not sure I could jot them all down). This really meant nothing to us because we knew he wasn’t coming home for months, he would need to be transferred to Harrogate Special Care Baby Unit first.

To be honest, the doctors had hinted that we would never take him home. The doctors had actually told us he would not survive.