As someone who is trying have faith in God I’ve discovered that in Death if someone is for instance of an older age had their families lived their lives way wanted an accomplished all they wanted that when time comes it’s ok to not pray for recovery or healing but actually pray It time for them to pass peacefully meet their makers an for them to take their place in heavens realm in we one day see them again., With my grandad in the last few weeks seeing him in hospital so old, so frail not the person once was I knew his soul was ready leave this life it was to be hard but I did pray God listened to his Will his heart an if his time let him go peacefully, shortly after my Grandad passed my sons Great Grandad had a major stroke one he would not recover from he was moved to a home to make he’s final few weeks comfortable an again I prayed God listen to his heart an his will an when time comes let him to go peacefully. I’ve discovered that these deaths are classed as good Deaths strange notion a Good Death. But it then got me thinking about my daughter she was born still born she had severe spina bifida an hydrocephalus her death was not expected or planned whe received news did I prayed doctors had got wrong, I prayed for divine an medical intervention even asked for a blessing of healing over my bump but at the follow up consultation the harsh reality my child would not survive birth was put to me an that it’d be better end the pregnancy early an deliver her born sleeping an so I did at 22 weeks an 6 days surrounded by our immediate family I did will myself to Die too moment she did my body shut down crash team called in my family ushered out my mum prayed to god don’t take me her baby an you’ll gather I survived but I did suffer terribly mentally for years afterwards tortured myself spent along time in an out of psychiatric services took along time for the guilt to go to mourn it was an always will be a bad death as I’ll never understand why when discovered pregnant was given the precious gift of life to have cruelly ripped an snatched away, then we move onto 2013 I finally went on to have my rainbow baby 10 days before Christmas the child who brought me hope after darkness an is my continued reason to fight the darkness as in August 2016 I lost my brother, by best friend to a preventable suicide for 21/2 years he battled demons was tortured mentally lost his soul to his alter ego an became possessed by a doll my family an I we constantly thought for help for him in the May of year he died we thought he’d finally turned a corner he was moving into mental health supported housing, he was volunteering at St. George’s an at. TCV hollybush was given a new lease of life was optimistic we’d get our Tim back but for whatever reason we don’t know why we are now fighting for answers why, What happened for him to deteriorate mentally again, why were the signs not picked up on , why when he reached out for help was it not given why the week he died did Accident an Emergancy not intervene why did his Gp not intervene an why did the staff at the supported living not intervene. Since losing Tim my family an I are now mentally tortured physically an emotionally drained an having now fight the NHS an social care an now the legal system to get the answers why today should be a day spent with my son but sadly I’ve had to make childcare arrangements will go to my mums argue an negotiate with our solicitor an barrister with my mum the band aid plaster trying protect me from hurt of losing Tim will be ripped of as mum an I will again have review an critique all the legal paper work an Work out our next steps today I’m mentally preparing myself for news that the courts have rejected our notion for the judicial review that’s challenged the coroner’s decision regarding article 2 and preparing myself our legal team may tell us stop perusing and I too now am slowly losing my faith an sense of hope because I can not move on with my life, days of feeling happiness have disappeared it’s know a battle of get through each day best can because I’ve my son an he needs me an I don’t want my family facing anymore heartache an pain, I throw myself into fighting for answers for tim, trying challenge the system get changes made but we are no further forwards but rather further back I don’t think we’ll get the answers an closure we’re looking for an destined to carry the heavy burden and pain of losing tim with us and Day he died to part of us to died his death changed us changed how we see life, how we now interact an engage an took part away our hearts and souls so we’re no longer the people we used to be I try engage in life because of Myles but at same time have cut myself off an detached myself from certain aspects to survive the hell were now facing, losing a child at whatever age to a parent is never a good death it wasn’t something I’d ever want me an mum share going through and losing a brother to a preventable suicide wasn’t a good death neither they are bad Deaths ones I know struggle with an carry heartache off to me they are bad Deaths an when time comes I will tell God that and I know he’s expecting that because I do know argue with him, challenge verses in the bible do not pray as devoutly as once did an sadly feel him lost from my life I do try search for him but am on a string hold now with my faith I once cut him out my life if not for my son probably would have done because as I said earlier he’s my continued hope in darkness I fell myself he’s my gift from God an with that comes the sense I’ve to be eternally grateful an so I persevere in my ongoing battle with faith in life we do all die but death is not always Good because some Deaths are not inevitable an those that die too soon had more out of life to give did not have The chance reach their potential an life had more to offer them an so death was bad and robbed them of the joy of life the pain of that death an fighting to understand why then ripples throughout the lives of loved ones so when people talk about death I’ve discovered some deaths yes are good and some are just as equally bad an it’s important when people now talk about death consider what is a good death an Too what is a bad death an how you know support people going through that x x x
I’m laid in the dark feeling nervous, anxious sick to my stomach my baby sleeping next to me, my baby been my 4 year old son. Either at Midnight or sometime tomorrow my baby will get his email confirming his school place. At first I was only anxious would we get our first choice, then it was anxious would he adjust going full time Monday to Friday, then when nursery started introducing homework as part of getting school ready that anxiety hit is Myles school ready then I had the excitement ooh I’ll have all this extra time can look at having my life an identity back try have a career but then hit with the stark sadness an anxiety crap am going to have all this time an how am I gonna fit in Myles have so many different expereiences us doing stuff together time will be drastically confined to weekends an soon the school holidays. Myles has grown to quick times gone too fast the Milestones are forced stages of transition, times forcing me to face up to he’s no longer a baby, nor infant nor toddler I’m not ready for the next stages I want to keep him as my baby for longer. Stomachs knotting, twisting heart beating ten to dozen, palms sweating, fear, panic, kicking in one email changes everything, one email don’t think actually want to open, one email don’t want to be one that forces the realisation Myles school is which equals Myles is a baby no more don’t want fell that sadness, that feeling of loss that comes with the next stage an Milestone. That emails also the stark reminder of a moment a milestone never had with Marybeth it’s a stark reminder of a moment missed out on with her. I wonder what would happen if I didn’t open, didn’t acknowledge would it go away could I keep Myles as an infant, baby, toddler a little longer, I wonder if Myles is aware an understands the process of been ready for school it would make the anxieties easier manage if he was able say Mum I’m ready it’s time but he’s only 4 an that’s a big ask of a 4 year old say Mum I’m ready for my next Milestone, next chapter in my journey, I’m ready mum for school, I’m picturing though me wanting shout but Mummy’s not ready just yet can we not just keep you are just a little longer an us choose when ready for Myles next Milestone because how do I cope, how do I let my little boy grow up x x
This last week I’ve heard you say the words ” I can’t ” an a thought bubble in my head pops up ” no such word as can’t “, I never say verbally I coax you , I guide you , I help you with what your struggling with an I tell you how proud ” I am ” learning to count, dress yourself an put your coat on by yourself are big things to do when your 4 and something we have work on as I know in September when you go into full time school be expected to do an I don’t want you feel scared or under pressure or even laughed at if can’t do because sadly children don’t mean be cruel but can be but I’ll do whatever I can make it a smooth transition for you because mummy can’t come school an fight your corner like I do now,
As you’ll get older and grow you’ll be compared to others based on how u look, your weight, the clothes you were, your in status an even on your sexuality but at 4 that’s not something thing off right now but all you need know is that I your mum will always be proud, I will always thing your perfect , I will always thing your amazing.
I’ve noticed that people already have started comparing you to others picture you as a naughty child one who needs boundaries because you are loud, have ants in your pants and don’t sit still and have to be a mini tornado, to me I don’t curb that I don’t tell you be silent because I see it’s a gift your excited about the world, the people an places we see your growing your identity an building up your confidence an who am I too halt that my jobs to nurture you, build you up , I see your loudness to as a positive one of things I love about you.
From a young age through the bereavements we’ve faced you from a young age had an understanding for pain, for sadness a natural gift for compassion something as adults an life’s pressures we forget how to be compassionate you understood and knew Mummy was sad in your own way I think you was trying ask for help for me when you told people mummy was sad and I did feel guilty you sensed that because as your mum I want protect you from all lives heartaches but sadly I’ve to accept I can’t.
Last week you faced your first experience of heartache and able share your best friend was not your best friend he wanted to play with someone else an sadly the someone else was the girl in your class who you class as your girlfriend the little girl who’s hand you hold on the bus and who u like to share your sweets an walk into school with I’d like thing I handled the situation ok told you it’s ok they’re still your friends they’re giving u a chance make more new friends as at 4 I don’t want you to understand the pain of exclusion or to see so I hope I handled well and made u feel ok.
This sadly is the first of many relationships an break ups you’lll experience but was secretly relieved when we bumped into your best friend at the shops an he rushed to you to say hello and couldn’t wait to see you at school so you could both play as he’d put a smile back on your face.
I’m waffling now so I’ll stop I just wanted to write this blog an dedicate this blog for you for children’s mental health week to let you know I love you, I will nurture an support you an whenever u need am always here an don’t ever thing am not because whatever u face u can always count on me to be their and can come to me with anything x x
Do patient leaders, experts by experience really make a difference are we really valued or are we just another resource a tick box they can fill in completed on an equality check monitoring form. In May 2011 I had my own transformation my year of recovery I came of quite a lot of antipsychotic meds, stopped been zombified and learnt to feel emotion. I took control of my conditions I come to understand my head was not broken it was coming to terms with things I’d faced childhood abuse, losing a child born stillborn I got involved with supporting local an national mental health based charities an became a health champion, I spoke at NHS England an Kings Fund Events a top professor once quoted something I’d said today we’ve heard the word baby steps and the impact on recovery an tackling health inequalities an that with work they were doing they’d taken theirs an we’re then gonna take their steps, with Kings fund I challenged that people that volunteer are not exploited it’s our choice to do we have our own reasons for doing so, but doing none of those things mattered when I had my son I was still as seen as the person who’ll once had chronic an enduring mental health conditions an was sadly detained to the maternity department an risk assessed to prove I wasn’t mentally unwell anymore or a potential risk to my child. My brother Tim he became mentally unwell I knew the system was once were I was held was once were I was broken but too thought recovered from and I tried fight for his needs, fight for him get support begged for rehab for him, when in court in an unfit state tried ringing around finding him somewhere that could support him but failed an he did a short stint in prison when came out tried to get him help then too sadly believed services had changed but sadly I learned lives harsh realities they hadn’t an systemic failures ultimately led to my brother’s death again I’ve come out fighting trying get lessons from his death be learned from but I’m not an expert by experience or patient leader nor service User or Carer I’m someone’s sister, I’m the sister of someone who died too soon who had so much to give, to offer a live worth saving, I knock know on the doors of places not because I profess to be an expert or leader or voice for the vulnerable but be the voice of someone who wasn’t heard that someone were lessons could be learned from his death too could save lives but sadly his voice his story is one people not ready or hear or address because substance misuse, mental health an Deaths in community are not priority or high up on any radar or agenda an no mo or head of state interested in because not something they can use to boost their egos an popularity and so I sit and ask myself are we really valued and if are then why is it that still get treated as person once was, in kid gloves, their their your story was inspiring one need be heard but yet no one takes chance to work together with you to create new ways of working, explore and fix the systemic failures, get you involved working in the areas we’re you could be utilised make a difference but then I remember I was just someone who was once labelised ive dropped it but it still be expected elsewhere, I was just someone’s sister so not a professional or expert. I’ve also come realised professionals high up still have to fight same fights we do and from Twitter these last few weeks Psychiatry an pschology will always be at odds , service users will always have fight for their rights and at times we’ll even be against each other for services to want help me it’s either from a Dx point or know understand my traumas what about plain an simple what can we do katie, Do we really as patient leaders or experts by experience make that much difference because sitting back these last few weeks and questioning I question we don’t we’re just another useable source or commodity tomorrow it will be a different bus Health and social care go journey on an will be left fighting that little bit more so what do u need do have that voice equally valued the live experiences trually grasped harnessed an sadly learned from has true coproduction been established or is it all really different stages of involvement been dressed up but the moment question I ask myself did I make a difference when I started my original objective to get change and sadly I did not because I know mourn my brother, my best friend an still fighting for change but their will come a day I’ll one day say enough is enough and that will be day when realise equality an valued working together in partnership dosent happen as it is still very much a pipe dream.
On the 1st of February it’s Time To Talk Day I for last few years not partaken in for various reason’s but this year I have because it’s dawned on me people don’t rarely get to try and know me, talk to me, have painted a not nice picture of me not taken time to get to know me or Try understand me they’ll look down when I pass, try look busy, let’s not ask Katie how she is,
These last 18 months have been the most loneliest an most challenging especially with trying raise a toddler an self maintain having PTSD and I was hit with losing my brother to a preventable suicide an passing of my grandad closest thing had to a Dad.
These last 18 months I’ve struggled felt isolated people’s lives moved on mine didn’t , people didn’t want ask me how I was after my brother’s death because they didn’t know how I’d react I’m pictured as an angry, volatile person because have gone 0-10 on blow my head shouting scale but people don’t realise if I persevere I or my sons at threat I will become heightened an will react an I will use certain instances to react because the things that I don’t want to nor ready face come to terms with an deal with I try ignore but I get overwhelmed by something as simple as someone telling my child off is enough to spark that fuse and I’ll explode and I understand that when I explode it’s not a pretty site, I hate myself after it , I will bully myself turn in on myself I attack an put myself, I’ve also been known in certain situations known to suddenly drop everything and run because I don’t want people see the upset, the pain I don’t want people see me react me be weak, be vulnerable, don’t want feel trapped, panicked and nor do I want explode so see I’m stuck in a catch 22 do I blow up, do I let you see me upset.
I can’t though let you see me upset because you’ve not given me a chance, got to know me, not got to understand me a handful of people do they don’t see me as a scary, psycho mad person they see the scared person the person that’s hurting they see past that side of me they know it’s something that’s part of me can’t change no amount of therapy an anger management an counselling will help I’ve just had to adapt, to accept that’s one of my traits and angry Katie is only a small part of me but it’s the part that stands out.
It saddens me and hurts me that people may feel intimidated or scared of me because I’m not a scary or bad person nor am I violent I just get aggressive but that’s because I trying be assertive an protect myself but it comes out like a loud screaming banshee and I’m not that person all the time just a small percent off but because people don’t get past that point sadly the world does become lonely an isolating I try pretend it doesn’t hurt, try ignore how people are, I find myself now to avoiding people because when you stop to talk I struggle know what say, can’t pretend alls ok when not, selfishly don’t want hear how lives great don’t want pretend neither it is and rather not have people squirm , cut short conversations when do try open up because then I’m protecting me not opening up, exposing myself protecting my heart, ,my well being my self care.
Learning how to feel live with my emotions was a blessing at first but not so much at the moment because how now perceived when hit a stumbling block an working way through, medication, therapy hasn’t been an option for me I don’t yet trust services because how I ended up in past an because failings which led my brother’s death I plod on try attack get through each day one at a time.
If people took time to get to know me, too ask , too be my friend they’d see the nice Katie, friendly one,one whould go try out way make sure is ok but people struggle give me a chance I need people do that because it’s only way I’ll be able let you in because I struggle let people in because I’m that used been hurt, rejected people pick up on perceptions on me that I don’t let my guard down an sadly even though I’m extrovert need you make first move an try.
Theirs been days I’ve felt that lost, that alone questioned my existence have had days wished not woken up because don’t want go through life perceived something not, wanted life go back how was too been good but I can’t change the last 18 months just try get me back in check an I’m doing slowly but sadly I’ll always be held back if people can’t see past a small part of me.. and so for Time To Talk Day I wanted to address people picturing me as a monster, psycho, a person feel intimidated by because deep down that’s not me also I want people too try understand how when your anxious, feel at risk an have ptsd you don’t see logical ways out and when we talk about Mental Health we don’t talk much about anger, and how anger is a part of Mental health an how anger has people perceived an so I thought I’d through my blog challenge an address because here’s safe do I can be vulnerable because I’m hid behind the keyboard however tomorrow u may see me in person an if do just try say hello wish me a good day make me feel visible, accepted a chance belong because I do try my very best and don’t want to be seen anymore as scary, psycho Katie and so I hope on Time To Talk Day people see past someone’s Mental Health an see the person that’s within.
Today Dad I saw you again, brought Myles with Me, Myles has seen you know twice he knows your his Grandad he loved playing his games with you today an only wanted play them with you he dosent know the you from the past nor care about or need know to him building a relationship with you is easy, child’s play he gets to know you for the now, the hear, the present to him it’s like you’ve always been their even though it only twice he does not get anxious or panic an worry about what we’ll talk about or say, will it feel strange or awkward dosent need pray for Gods intervention an be on our side as we pray an build a new relationship, wish I could follow Myles lead an attitude not let fear or the past get in the way because your are different to the Dad I Knew and used be, I know that the Drink stopped you from being the Dad I wanted you be and I can’t keep partly holding you responsible for things that went on in my life because when do that will stop us moving forward also Drink was the poison not you and wasn’t your personally that was not their it was the Drink that took you away. It was nice to watch Myles and you play it made it easier to chat an talk as you did, it felt normal like an everyday afternoon of a daughter an her son visiting Grandad and pleased went like that, I’m pleased Myles too taken to you wants be around you, see you play with you and feels safe an loves you automatically because your his Grandad and he’s a good judge of character too an today was nice follow Myles lead and attitude and the foundations an building blocks of our relationship be built on the today’s an the tommorows the moments have an can plan have, build how a child would build a relationship one free of guilt and judgement an one of love an innocence an natural care free approach to its strange a four year old been a mediator, the bridge of the gap and not realise they are but that’s the magic I suppose of been a child and child’s play as to them it’s easy, simple they don’t see ifs, buts, whys an the what ifs to them theirs no process navigate, mediate an weigh up an assess. The quiet an awkward moments were their but only briefly Myles he as soon as felt that was loud look at me an so snap out off. I hope our relationship continues to grow an Too flourish we’re still in the very early days taking baby steps so since doing that will build up like child’s play now so that we grow, we develop, we’re strong an when stumble as toddle jump back up an brush down for its time to take that journey, that walk those baby steps here’s to having a child like, childs play attitude and thank you to both you and Myles for today as it’s time I had my Dad back in my life and looking forward to our journey now an we’re will lead us too x x x x
We’re now in December the time of year people get in too the spirit of been festive an giving an Christmas cheer, children get excited about what they wish for on their lists comes true because Santa sees an grants their wishes. People are getting out the advent calendars, planning to watch all the xmas movies in the build up too, theirs elves on shelves, tress been put up lights an all the trimmings, trips to xmas markets, festive light switch ons, and for kids santa too.
As a parent you have to do theses things for your child, I’ve to currently do them for mine but when you’ve had an emotional and rough year an a half suffered bereavement after bereavement, been hit with major changes an disruptions to your home life an only just try navigate get back on track is hard to feel festive get in to that Christmas spirit because we’re was the magic when you needed it, At Christmas we talk about the gifts of Joy, Hope an Peace these are gifts you need all year round, everyday especially to get through what live throws at you.
For most this time of year will be filled with fun an cheer but spare a thought for those it’s probably not, in 2009 I had what was one of the xmas I’d say was a bad one I spent it detained under the Mental Health Act Under Section 3, I didn’t open presents under the tree but on a hospital bed, I didn’t have the full xmas dinner with my family but strangers instead their was no tree, no lights no decorations no festive cheer their was no Christmas magic that year so at xmas I do reflect on that thing of all who maybe going through that.
In 2013 I’d say I had what was my best Christmas I’d just had my son my very own Christmas miracle after losing a child born stillborn in March 2002 I thought I’d never have a child of my own an as time went on I gave up op on having one and so even though I’ve now got Myles I do to spare a thought for parents facing harsh reality of knowing the pain what it’s like to lose a child especially getting through that 1st xmas every xmas I still imagine how it’d be if had Marybeth an do more so now I’ve Myles to celebrate with, I also spare a thought for those who desperstley wanted a child an pain not having one and seeing friends an families having families of their own even though your happy you still feel like you’ve had your heart tugged out.
Last xmas I was not excited for nor looking forward too because it was to be the first xmas without my brother Tim, I remember using my son , my niece n nephews as my driving force to get through because they’re just kids they don’t need face the harsh realities of live, I knew also for my mum had try an do something to ease her through xmas as knew would be difficult her go through and knew xmas would heighten pain she felt.
So I brought the magic of Christmas to my house I threw my son an his twin cousins a Christmas themed birthday party, invited Santa Claus round the children’s excitement an faces an look of joy injected that little bit of hope an magic get through, I still got Tim a card an present as Wasn’t ready to not too even took part in arranging a toy collection for George’s Crypt for Children who face some of the most bleakest things in life an did in memory of Tim kinda wished did again this year but sadly life got in way an other stuff get through so maybe next year I’ll do.
Again this year I will try steer my family through highs an lows of the festive period and be hopeful in new year we’ll get the answers we’re looking for surrounding my brother’s death , I’ll hold both Myles nanna, great nanna and his grandma in my heart an pray they find a way get through this time of year as they go through their first xmases without John and without Alan in the winter night sky and when the stars twinkle I’ll whisper to Myles that’s his sister, uncle an great grandads watching over coming down to say Merry Xmas an that in spirit we’re still here just not near but have not completely gone and will always be with him in spirit an heart,
As I’ve wrote this blog I’ve wondered why write I suppose it’s my way of saying that I will fake my way through xmas for Myles starting by next week taking him to the magical world of Thomas land for his early bday treat , I’ll put up a tree lights an decorations when we get back, I’ll try do something nice with mum whilst we’re down at Westminster helping NHS England around their Learning From Deaths work as we remain hopeful an optomistic can make a difference for families in the future who may face similar experiences to ours but they be supported with compassion an empathy unlike us. When come back do the mad xmas shop, present buying an wrapping for my loved ones get excited at thought watching them feel gift of joy when they get the gifts they’ve wished for an I’ve realised in one way I’m acknowledging Christmas can be a difficult kind of year but also as I’ve reflected on I’m slowly injecing into me ways I’ll find Christmas gift of hope too have the joy an spirit too want to celebrate be festive an try to find the missing magic an hope too others who’s missing that too I pray that you may find ways to find x x x