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

My personal Learning disabilities awareness week 2020

Well what a week this has been. For those that don’t know it is now the tail end of #Learningdisabilitiesweek. It’s perhaps the first one where I haven’t felt the need to shout every week is awareness week as myself and many other families live with the reality of what’s these tokenistic weeks mean. (Carers week being the prime example of such!) 

But this week for me feels like I have been dipping my toe in the learning disabilities nurses version of LD week. 

On my own Facebook I have posted snippets for those amongst my friends to relate to or discuss or for some, educate. Snippets around choice. Snippets around independence. Snippets around emotions. Snippets around friendships. 

Friendships being the theme of the week. I have made many new “friends” through my twitter and they feel like friends. They are mostly LD nurses and students. Twitter has been a week of celebration and awareness and I’ve been proud to be a part of that. i created videos using sign language and also a video about why i want to be a learning disability nurse and these were shared widely amongst others and from others which all inspire my journey.

What I have begun to think about this week is being at the start of a journey where I need to find a professional balance. My son is my world and I love to talk about him and relate experiences with him to help others but I’m aware of my need for a balance. Others have made assumptions about how he behaves as I post happy smiley pictures and (rightly) speak positively about him and I’ve been defensive in the past - that shows I am allowing emotion to overshadow reaction. People only know what you allow them to see or hear. I will no doubt talk about Mikey to my fellow students (when I start) and on this blog but at the same time I need to make a conscious effort to look at the wider picture and find a balance. Most importantly for his safety and dignity, but also for my development in the wider world. 

It’s also the week I handed in my notice (3 months) to my current employer so I can start my learning disability nursing degree in September. That was a very stomach churney experience. Made it very real. But very exciting.  

The week ended with a learning disability nurses et al zoom tea party with I think about 60 others! An hour of pure happy with like minded people. I spoke to people whose books I’ve been reading. I listened to many role models for my career going forward.  I started with a bobble hat on my head but changed to AC/DC devil horns. I enjoyed banter about a mini roll chocolate cake.  It really was an hour of pure happy.  I had a lovely time and felt included - I felt I am finally reaching where I need to be. 

A lovely week made lovely by lovely people. Thankyou. 

And of course none of this would be happening without my son Mikey. My experiences as his mum taken forward to help others. A living legacy. Thankyou Mikey. 

Happy learning disabilities week everyone. 

#Learningdisabilitiesweek2020 #LDweek20 #keephoLDNonTP #KeephoLDNon 

Reunited

Further to my last post, this is a happy post to say that exactly 35 days later (so exactly 70 days apart in total) my son and I were reunited. I won't go onto the whys and where fores on here as the important thing is, our hearts were healed.

I didn't know it was going to happen until the night before, and safe to say I was like a child on Christmas eve. I did not sleep at all well. I had arranged to arrive at his house at ten am so I could use the allocated entrance and get PPE'd up! The morning dragged until I got in my car and drove towards his house. Whilst sitting in a small queue of traffic I felt the emotion begin to bubble up, but I got it in check. I had dreamt of this moment for ten weeks. I expected not to be able to control emotion, but as always I needed to focus on the needs of my son. To go in there a crying bubbling mess would be a sensory over load for him. I had no idea how he would react anyway. I decided I needed to act as if I had only seen him yesterday.

That was the stance i took. I was in the room. His support went to fetch him. I couldn't help but call out his name. I needed him to hear my voice. I heard the familiar shuffle noise he makes when hes walking. Those steps getting closer. The moment was here. 

I was wearing a mask and I had to lift it momentarily so he could see my full face. I could see him visibly taking it all in and processing. Then he smiled. That beautiful smile. That smile that is the curve that always straightens my world. 

My heart healed in that moment.

We were able to spend a couple of hours together and i am so proud of how he coped with me wearing a mask and PPE etc. We adapted our old familiar games. We had fun. We were mum and son.

Reunited.

Together.

Perfect.