Media Virgin

I had no idea that I would ever be asked to be part of any media let alone National Radio, twice in a week! Surprised is an understatement shocked is the the reality.

The power of Instagram really came into its own this time because it was through this that I was contacted firstly by Radio5live for a phone in about premature babies and then BBC Asian Network to discuss my blog and caring for Arjun and premature babies.

Radio5live was relatively easy to be honest, not very glamorous, no trips to a studio or mics, I was sitting in my lounge on the telephone with a mug of my favourite brew! The call lasted about 10min hardly enough time to take it all in!

However, BBC Asian Network was very different. As a child I grew up listening to the channel, and often thought how do you actually get on the radio? The irony is that when I went to Uni to study English, it was with a view to being a journalist, but my parents did not approve, journalism in any form wasn’t on the approved jobs list, so I became a teacher. If Im honest, my heart still lies with broadcast journalism and after my brush with radio I think I missed an opportunity. 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

Waiting for death is not easy

Arjun in hospital

I know it has been a while since I have blogged but the past few months have been pretty horrific; my Instagram @mommaupnorth has documented the majority of our journey.

It was only a few months ago that I sat with Arjun in hospital after he had been rushed in from school; vomiting blood, the medical term being ‘coffee granules’. Why? Because when there is a bleed in the stomach, the acid works its’ chemical magic to solidify the blood to resemble percolated coffee granules. In layman terms ‘congealed blood’. This was not the most alarming event, it was the sudden hyperthermia, his temperature had dramatically dropped to 33 degrees, which in essence meant that his brain was shutting down, therefore triggering a shut down in his vital organs.

He was dying. 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

Not ANOTHER girl!

It’s not all about religion or culture but also about personal opinion.
I remember the days we had our children, much like most mothers. It was filled with mixed emotions. It seemed that motherhood and parenting were about to alter your inner soul without warning or forgiveness and that now you were no longer the name you were given. Your birth name is no longer your identity but instead you are ‘Mum’ ‘mummy’ ‘Ma’ or ‘so and so’s Mum’. Or in my case ‘carer’. Culturally, I was labelled as ‘the poor mum with a disabled son’ or ‘the poor mum who went onto have daughters’. ‘The mum who should’ve waited before conceiving another daughter’. 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

6 Steps to dealing with Depression

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Here are some basics I found useful when I was suffering from my depression. I know I wrote about it in my last blog post, but  here I wanted to share with some of the things I tried. For me it was all about trial and error, but the most useful for me was learning to be kind to myself. Learning and understanding that I AM allowed to feel low and depressed but I HAVE to put a time limit it and try and move forward. I have to deafen myself to my negative and self deprecating thoughts, my negative voice needs to be shut down before it takes hold of me.

I am not going to pretend it is easy, because it isn’t; believe me over a decade later I am still in recovery.

 

1. Be kind to yourself. There is nothing wrong with feeling low. Nothing can prepare you for the shock of a newborn, no matter much you love him/her. Allow yourself to have these feelings and don’t beat yourself up about how you feel.
2. Physical Exercise Even if all this means is taking yourself out into the garden and walking around in the sunlight, alone or with your newborn. You can start with a slow stop and build up to a faster pace. However, just a little fresh air can get the endorphins flowing, but just try to exercise in daylight because the VIT D sunlight will help too.  Also, alongside lifting your mood, regular exercise offers other health benefits, such as lowering blood pressure, protecting against heart disease, cancer and boosting self-esteem.
3. Social Support When you’re depressed, the tendency is to withdraw and isolate. Even reaching out to close family members and friends can be tough. Compound that with the feelings of shame and the guilt you may feel at neglecting your relationships.But social support is absolutely essential to depression recovery. Staying connected to other people and the outside world will make a world of difference in your mood and outlook. And if you don’t feel that you have anyone to turn to, it’s never too late to build new friendships and improve your support network.
4. Time Heals Accept that your current mental state and that it is not entirely balanced. In the depths of depression, we tend to see the negatives in everything and find it harder to be balanced about what is going on. You must take the time to gently remind yourself that you are tuned into the ‘negativity channel’ and don’t listen to your thinking. It is definitely distorted when you are depressed. This idea alone can provide some comfort when the world appears bleak. It won’t last forever.

5. Challenge negative thinking Do you feel like you’re powerless or weak? That bad things happen and there’s not much you can do about it? That your situation is hopeless? Depression puts a negative spin on everything, including the way you see yourself and your expectations for the future. When these types of thoughts overwhelm you, it’s important to remind yourself that this is the depression talking. These irrational, pessimistic attitudes—known as cognitive distortions—aren’t realistic. When you really examine them they don’t hold up. But even so, they can be tough to give up. Just telling yourself to “think positive” won’t cut it. Often, they’re part of a lifelong pattern of thinking that’s become so automatic you’re not even completely aware of it.
Negative, unrealistic ways of thinking that fuel depression

All-or-nothing thinking – Looking at things in black-or-white categories, with no middle ground (“If I fall short of perfection, I’m a total failure.”)

Overgeneralisation – Generalising from a single negative experience, expecting it to hold true forever (“I can’t do anything right.”)

The mental filter – Ignoring positive events and focusing on the negative. Noticing the one thing that went wrong, rather than all the things that went right.

Diminishing the positive – Coming up with reasons why positive events don’t count (“She said she had a good time on our date, but I think she was just being nice.”)

Jumping to conclusions – Making negative interpretations without actual evidence. You act like a mind reader (“He must think I’m pathetic”) or a fortune teller (“I’ll be stuck in this dead end job forever.”)

Emotional reasoning – Believing that the way you feel reflects reality (“I feel like such a loser. I really am no good!”)

‘Shoulds’ and ‘should-nots’ – Holding yourself to a strict list of what you should and shouldn’t do, and beating yourself up if you don’t live up to your rules.

Labelling – Labelling yourself based on mistakes and perceived shortcomings (“I’m a failure; an idiot; a loser.”)

www.helpguide.org
www.lifehack.org

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6. Seek Professional Help. If you’ve taken self-help steps and made positive lifestyle changes and still find your depression getting worse, seek professional help. Needing additional help doesn’t mean you’re weak. Sometimes the negative thinking in depression can make you feel like you’re a lost cause, but depression can be treated and you can feel better!