Nurses and midwives talk with Ruth Oshikanlu

The other week it was an absolute pleasure to be interviewed by Ruth Oshikanlu as part of her wonderful Nurses and Midwives talks in honour of year of the nurse which Ruth describes as: 

"2020 is The Year of The Nurse and Midwife. Nurses & Midwives Talk is to showcase the wonderful contribution Nurses and Midwives make to people from before conception right to the grave. It also celebrates the diversity of the roles of nurses and midwives"

It was an absolute honour to be invited to interview. I stalked knew Ruth through twitter and felt at ease, and very excited to share my journey of getting to this point. Prior, I felt a bit of an imposter! The actual interview was only two days into induction week. By the end which felt more like friends having a chat,  I knew I had being able to contribute a different angle to the project and hopefully inspire someone somewhere who listens. Ruth reassured me that imposter syndrome never leaves us... so I feel one of the gang.

Once again, Thankyou Ruth. A proud start to my nursing journey that won't ever leave me. 

access my talk here (Facebook)

Day Four. Difficult lecture. Reflection.

This week is induction week but the real lectures have begun. I knew this one was coming and very aware that its a barrier to my engagement with the course. But before now I had decided to face it head on. 

Resuscitation.

Those who know our story or who have seen my Ted Talk know that I have had to begin resuscitation on my son twice. One due to a seizure and choking, and one due to cardiac. I am not going into details but instinct took over and emotions came after. And they did hit, like a brick wall. But my son (with a resilience most adults couldn't sustain) bounced back with life, so I followed his lead. But that stomach sick feeling I had for days after at what could have been does come back to bite me on the bum. I had assumed it was due to muscle memory when partaking in first aid courses, but due to covid, this lecture is online. Boom. That sickly feeling returned. 

Usually writing helps my brain process it, hence this blog. 

As the lecture proceeded, I found myself drifting and looking at the numerous photos I have of my son on the wall behind my computer. Many of them wouldn't exist if he hadn't fought to stay on earth. He is incredible.

But now I need to compartmentalise what happened so it doesn't bite me on the bum in my learning and in my career. Whilst in the lecture I spoke to my cohort peers and gained support and lovely messages. I need to reflect and in doing that I don't think there is anything I could have done different in preparation for this lecture. I am actively recognising my anxiety around it and will seek support from the channels in the university if and where needed.

But my message as always is everyone educate yourself on CPR as instinct takes over. My son wouldn't be here if I hadn't. 

Offically a learning disability nursing student! (in strange times- some advice for others)

So, my first post as a student learning disability nurse I thought would be around how I feel about it and the changes from the life I have come from into this world however I feel it important to offer some advice to others in similar situations- starting a course during a pandemic.

For me the concept of learning online wasn't a strange one. The whole of my last masters degree was by virtual campus using mainly webex. My cohort were faces on screens, personalities in my computer (and friends for life!)  When I applied for this masters degree I had hoped I would then be in face to face groups without the barrier of distance and screens.

The pandemic had other ideas.

Here we sit doing our induction online. The reality of this hit a little a week ago when i took my niece to university. (See picture for the uni survival kit 2020 style I put together for her)  She had a little wobble and I couldn't actively encourage her to be getting involved in big groups of people. She has since adapted and is loving her course and new life. I feel for 18 (or thereabouts) year olds navigating their new university life, many away from home, in the current climate. At an age where image and peer acceptance is so so important, they have the barriers. My own induction has been mainly on teams and this offers some interaction, but some on different nursing courses, I know has been recorded films to watch. They're deflated after so much hype.

Of course it is no ones fault. We are student nurses. We want the pandemic to be controlled and for least people to get sick but its important for those going through this transition to acknowledge and do all they can. So, I just wanted to offer the benefit of my experience as a online student previously and also because I worked solely online prior to becoming a student again, with a few tips.

• Make connections. Use social media. Make study groups. Those are the absolute key to keeping you going. Where safe arrange to meet up, but have that daily contact with your groups. Not just for study, but for banter, for encouragement or whatever is important to you,. That is the support network that will get you through, even when things change to face to face again. That's the group that will know when the next assignment is due in or where best to get your nails done (nails, what are they?) 
• Make your study area your own. If its photos all around of people who inspire you, so be it. If its a corporate wall planner so be it. If its twinkly lights, so be it. You are going to spend a lot of time there, it needs to feel happy and motivating. My own study area (organised chaos!) has many pictures of my son and family, an Annie doll, pretty stationary and post it notes EVERYWHERE :) 
• Be comfortable. A dining chair isn't going to do your back any good long term. If you can invest in a decent chair or at least back support. You need that back to stay well! 
• Walk away from the screen as much as possible. The emphasis is on "walk away."  Stretch the legs, leave the room, get fresh air if you can. I know taking your phone with you is inevitable and you may end up scrolling social media but that break form the intensity of your learning screen will help. (Try to have non phone time too!)
• Drink plenty of water. Its good for you and if nothing else it will make you leave your desk to go for a wee! 
• Most importantly be kind to yourself. Recognise if online learning is getting tough. Talk to your peers (they really will understand) Talk to you study support networks. You can do this but as they say, its ok not to be ok too.
• Last but not least, be proud. you're starting a course in the midst of a pandemic . That's no mean feat. Many deferred for a year (that's ok too, we are all different) but you have been on a journey to get this far and can keep going. You're amazing. 

I really hope this helps someone. L. x

Our Ketogenic miracle

 Just sharing a case study that was delivered to neurologists and other doctors four years ago about our keto journey -

The ketogenic miracle

Its two years this month since M started on the ketogenic diet. What a life changing decision that was. Rewind two years... My boy had exhausted trying most AEDs Options were scarce. Surgery not an option due to his bodies inability to cope with anaesthetics.

Seizures were varied and severe. Ranging from nocturnal tonic clonics to gelastics to partials... daily. Regular rescue medicine intervention. Cardiac arrest even due to said midazalom. I knew if this carried on, I would lose my boy. My world. I was already losing him like a drip feed of poison.  Seizures took a little more of him each time. In turn a piece of my heart went with him. Helpless I could only watch his writhing body cope with seizure after seizure. Never knowing if this was the last. Every second feeling like an hour. Measuring the midazalom in the hope that very activity would scare away the seizure monster. Paramedics became a regular visitor in our house. First name terms all round. Gentle banter even, yet inside my heart crying out for me to take the place of my sons own struggling body. It even gets to the point when the unthinkable becomes thinkable. A point where you know that if the seizure monster were to take him away from me, it would be a happy release for his body. No parent should have to deal with that thought. No parent should have to resuscitate their childs body as life drains from it. I did, twice.

I had heard of the ketogenic diet. I bravely asked our neuro about it and he welcomed my suggestion with an enthusiastic response. We are lucky enough to be under a hospital where there is a whole (fantastic) team. The ball started rolling. Appointments were made. Training pursued. It’s not been easy. Daily bloods from a child whom you can’t explain things to, yet that soon became a routine. M is part oral and part gastrostomy fed. Learning and adapting to his new diet. Day four we reached our ketone aim... it’s a scary concept putting your child into ketosis. My two nieces are type one diabetic s so I was very much aware of the implications. It also went against everything I had learnt in their care. Perseverance, determination and extreme vigilance. Every ounce of food measured. Every drop of keto mix (as i cal it) accounted for. Those beautiful little ketones set about their task. 

So two years on... here we are. I have a different child. Seizures are drastically reduced. We only get a break through when he is poorly or stressed. Admittedly I see some clusters of smaller partials or absences when he is tired. But, he is awake. He is progressing massively at school, using an ipad to communicate. Enjoying the world around him. M being awake has brought its own challenges. Anxiety due to his other diagnoses is the biggest resulting in some challenging behaviour. This is the lesser of the two evils though and management strategies are in place. I have my boy back and I don’t fear each night that it could be his last. I am confident he is going to keep developing into a confident young man and make the best within his limitations. This is all thanks to the ketogeic diet, the ketogenic miracle.

I urge you. Educate yourselves about it. Embrace it. You literally will save more lives. Our ketogenic team have and do. I will always be grateful to every single one for allowing us to go on the diet and for their education, support and guidance every step of the way. Because of that, my son has a future.

It’s official!

It’s official! 

Will be back to post more soon but so excited! Roll on September (though I’ve some RPL and a science workbook to complete first) 

For all the parent carers..

I put this on my social

Media. Thought it worth a share here too. 

I just want to say a big massive well done to almost all on my friends list. You don't hear it often enough. You hear the words "hugs" and "keep strong" and blah blah but more than I am able to tag deserve to hear those words...well done.

Years of tears, pain, frustration, happiness, fear...every emotion going. Being able to keep calm and non reactive as you feel the hair being ripped from your scalp. not retaliating at a punch that gives you stars. Severe sleep deprivation that leaves you sick but you have to go on. Carrying out invasive procedures on the child you love more than life. Making them cry but knowing it has to be done. Fighting authorities who just want to save money. Researching for hours to get the best for your child, most of which should be a god given right. Standing up for and advocating like no other could imagine, Sacrificing a career you love and your own identity to give all that you can. The crying inside when your sleeping child has "messed everywhere and you know you have to wake them to clean them up. The unknown hot cuppas. The non or different communication resulting in frustration for you and them. The isolation because its safe indoors. The extended planning to get outdoors. The loss of your own dignity to go to the toilet in peace. The agony of watching your world slip away. The elation of seeing them fight back but no time to deal with your own emotions. The 24/7/365 on call job. The back breaking physical work to keep your child as mobile as possible within their means. The walking catalogue you have become of equipment, medicines and medical terms. The strain on relationships and siblings and friendships. The loss of many friendships because you don't fit in their bubble. The endless form filling and care planning. The loss of your own privacy so can have help in the home. The having to fight for some help so you are able to carry on. This list goes on and on.

You do it because you adore your child. That's standard for most parents. What isn't standard is the amount of work you have to do to keep them safe and alive, help them thrive and teach the world about them. Well done you! 

National writing day...

Today is national writing day. Apparently. Which makes me feel like I should write. Work is a crazy day today in addition to an important meeting for my son so instead I share this piece I wrote a long time ago about my son for the situation as it was then. 

Eyes Full Of Love

You know something? I was asked today about a couple of things that got me thinking. The grey matter in my head started sparking little currents of electricity and thoughts started running wild. I have something that I really want to share with you. Most of you are already aware that I do not, and never have, considered myself unlucky when I look at my child. He is very special and means the world to me!

I can almost hear you asking where this is leading. Well, have patience please – I’ll take you on a road of wonder. A road where not all things are as they seem. A road that some people will recognise, but most of the people in the world would disagree. A road that you may, I believe, already have some knowledge and memories of. The road is one that has been very well travelled by many, many people in the past and is still waiting for navigators of the future. A road that is seen differently by everyone. This story tells you of my travels down that road today aided by remembered journeys made over the last few months.

Some people look at Michael and see him through cloudy eyes that are filled with sad and disjointed views of normal and perfection. Michael, to me, is perfection! He is a child as any other, and was born for a reason. Michael has no preconceived ideas about the way people look at him. He has no idea about the difference between a good person and a bad person. He sees nothing but good in everyone and everything. He is a child so full of love and courage, determined to seek the good that is within him and find it everywhere he looks. Okay, Michael is a child with a disability. A disability that no-one could fail to notice – not a blind man, not a deaf man. But Michael is only disabled when compared to the average walking talking humanoid on earth. So he cannot and will not ever run? So what? That doesn’t take away his right to live a happy and peaceful life! So he cannot and will not ever eat? So what? That so called disability may just save his life. So he cannot and will not ever talk? Well, you are so wrong with that! Michael does speak – he just does not use his mouth! Look at Michael’s face – see how it lights up in the brightest “hello” you can see? Michael speaks with his face and his beautifully expressive eyes! Michael tells you he loves you – just look into his eyes – so full of love and joy – anybody and everybody can see it! The love Michael feels comes directly from his heart. You can see the love shining from his eyes whenever you look at him! Michael is happy to be here – and he wants everyone to know! All the people that know Michael love him. Michael has that ability – the ability to melt your heart with love and compassion. The ability to make you see past his obvious disability and see the courageous and determined child that only wants to be happy.

It is not Michael who has the disability; it is those who fail to see past their own eyes that have a very definite disability. For they have failed to see the joy and love that is there for the rest of the world to see. They cannot see that this little child is not ashamed or angry at what life has given him. They fail to see the innocent beauty of a child who is so wonderfully happy to be in this world of ours. They only see the wheelchair and what that wheelchair means in their much neglected minds. They cannot see that the wheelchair that would act as chains to them, is this little boy’s escape. The freedom that they take for granted is only given to Michael by the use of a wheelchair. But Michael sits proud and strong and does not see the looks of pity. He sees not that people see no further than his chair – and if he did see what they saw? He would smile wider – he would love harder. Why? Because Michael is a child with an advantage on us. Michael’s advantage is that he sees nothing but love and joy everywhere! Love and joy when others around him are seeing normal – plain, bog-standard normal. And all that comes with it.

I am lucky – very lucky! For I have a son who is loved by everyone who knows him and some who do not. Michael is lucky – very lucky! Probably far luckier than any of us. For he sees only the beauty in the world that surrounds him. A seagull making loud noises – that is a reason to smile for Michael. A tatty empty crisp packet? Rubbish to you and me? – Oh such joy does Michael find with that! Windy weather blowing every which way – for Michael that wind is like a strong breath of fresh air stroking his cheek. The rain that falls and means changes of plans to the day’s activities – you should see the sheer exhilaration on Michaels face as the raindrops splash and tickle his face!

Someone asked me why he has to suffer so? How can I watch him perhaps daily or sometimes hourly struggle with pain? Sure, Michael feels pain. Such a tremendous amount of pain in one so young has been unbearable to watch. But Michael is still here fighting for what Michael believes in. He has had several opportunities to “opt” out of this life – but he has fought to stay here on earth with us. He will not give up – he has too much living to do. He is a strong determined little boy who will not give less than 100% to everything. Even when he is so very, very poorly he tries to show his happiness in life, by trying to smile and laugh – if he ends up crying it’s not because of the effort to be happy. Michael is a little boy whom I believe has been kissed by an angel – and he has the mark to show for it. He is nothing other than a blessing sent here for me to love, he is my little angel here on earth and nobody should pity him. Feel sad for him because he is struggling – yes. But not pity – because Michael doesn’t want or need your pity – all Michael wants is the chance to continue his unique, happy and loving life in this wonderful unique world of ours.

So now the journey comes to a pause. Junctions appear in all roads. They are the points at which the journey may change direction. I’d like to think that Michael’s journey will become pain free. But, perhaps, most importantly, I would like to see my little angel shine bright for now and evermore in the knowledge that the world can see him for what he really is:

Michael – A superbly happy little boy. Bless you Michael. Love you forever and beyond, Mum. xx