Dear Ed

Dear Ed

I have watched your programme on the social care system in tears not because of the stories you shared (although they are heartbreaking) but because this is truly only the tip of the iceberg. Carers are the backbone of this country holding the weight of the social care crisis upon them, yet how long can they continue to do so before they break, the whole system is hurting.

Whilst I really hope and pray your programme brings awareness to those in power I do feel that your journey cannot end here. To champion carers I ask you to please champion us all, so I invite you to come meet,visit, grab a cuppa with parent carers of children with disabilities like myself. Those that also care 24 hours a day with little respite or support and those who battle daily for our children to be seen worthy by our current government.

Let me introduce you to my son Daniel, he is a 7 year old bundle of love. He is cheeky, full of life and loves animals and his favourite person is Peter Wright the Yorkshire vet and I’m kind of ok with that. Yet to those in power he is a burden on society, when I ask for support I’m told priorities have to be made, when I ask for his basic needs to be met I’m told of a policy that doesn’t allow for it. This last year the word Covid could have be easily added to the dictionary with the definition “useful excuse “. I am not at all minimising the impact of the pandemic I like so many others have lost loved ones but when the word is used as an excuse I find it insulting and shameful. These issues were there before the pandemic and Covid has literally just been the light that has shined upon them, bringing them out of the shadows, yet it’s being used as an excuse to hide behind.

Parent carers are at the point of being broken, exhausted with the constant battling for services, the constant begging for support. Drained by the daily strain of caring, isolated in a world many cannot understand or even want to. Parents wanting to just be Mom and Dad instead of nurse, carer, physio and so much more. Our children have been forgotten, seen as not worthy in all areas including the Covid recovery plan. My son has been out of education since March of last year, his emotional health has been hit so hard by the isolation that he is now so scared that everyone is going to leave him that he panics if he cannot hear us. This panic has seen him hospitalised, panic attacks so severe that Drs nearly ventilated him before deciding to sedate him instead. Should this happen to any 7 year old?

My son is being judged by his disabilities and conditions rather than by his spirit and determination. Assuming disability means a lack of understanding, judging communication by the lack of words.

Personally I’m exhausted waiting on a GP appointment to finally seek help for the pain that I am in. I’ve had one full nights sleep since 2016 but I cannot find carers to take on my direct payment hours, the level of his complexities scary in comparison to the wage I can offer. My husband and I had been out of work since the beginning of pandemic, we are foster carers but shielding doesn’t allow this to happen. We are lost both physically, emotionally and financially.

Yet I’m faced by comments like “well you are loaded” it’s seems my child’s disability payment is vast in the eyes of others , oh and don’t forget our free van, what a lucky boy my son is, ignorance feeding the isolation.

Yet what happens if I break who will then care for my child? What if I get sick, this fear has eaten away at me for the last 18 months the little sleep I get broken by this anxiety. Even now I am scared to go anywhere for the fear of bringing the virus home to Daniel. We celebrated our 25th wedding anniversary at the beginning of this month at a McDonald’s takeaway, what rock an roll lives we lead.

Yet this situation hasn’t just arisen due to the pandemic, this as you highlighted in your programme is partly due to the reduction in local authorities budgets which has dramatically hit families like mine. It is also due to the lack of respect for the job of a carer both paid or unpaid, the dismissing of what is a skilled and demanding role. Also things like respite or home care is a not a priority to most and doesn’t win votes, well that’s until they need it of course.

Our children, are the forgotten ones, the pandemic began and our doors closed and services disappeared. Children waiting for equipment for far too long, wheelchairs to small yet the only way a child can travel. Isolating and heartbreaking.

The void of this pandemic has been filled by some incredible charities but is it their place to protect the vulnerable or should that be the role of our government?

I hope I am preaching to the converted, your empathy and compassion shown on this programme made me wish your were back in politics. Maybe we need more politicians and policy makers to go on a journey like yours.

All I ask is that this programme is not the end of your discovery into the world of social care, that you would consider coming and meeting with families like mine, with the charities advocating for us.

The government says “every child matters” help me and many others make sure our child matters.

Daniel matters.

To just miss you.

Sometimes I wish for the innocence of a child. If I ignore it then it will go away, fingers in my ears means I cannot hear it. If I don’t believe then it’s not real.

But it is and I’m not.

My innocence has gone

I tried so hard to hold on but into the ground it went with you.

I mean how do you bury your child then believe the world is a good place?

How does your heart break and you still have hope?

I live a seasaw existence trying to believe through a curtain of pain and missing.

How do I have Hope, when Hope was lost?

It’s been 13 years since I lost you, 13 years to the day the whole world should of ended. How dare this world continue without you a part of it.

Grief is unfair and cruel, spiced with an extra splash of agony.

Time is a healer is the biggest lie, fraudulent words whispering off so many tongues.

I will never accept losing you, your death was not a experience for growth or a period of learning. It’s a evil, awful thing that tortures daily.

Don’t ask me to rise upon it today, today on your anniversary I get to speak my truth. My words not shielded in polite conversation. I’m angry, I’m hurt and I’m furious at God.

Why why why?

Don’t ask me to look at Daniel and be thankful that I have him now. Yes my love for him infinite but one child doesn’t not replace another. Daniel is a unique blessing on his own accord not a replacement for Livvy. That would be unfair to us all. You don’t just pop to the store to replace a child, here you go have a new one,all is better.

Don’t ask me to pretend today, pretend that this world is still a place full of joy and love and light when my brightest light is missing. Don’t tell me she shines in heaven, yes maybe she does but I’m not there and I cannot see it and I’m selfish like that.

Don’t ask me to understand if you have forgotten her or what day this is. Because how bloody dare you, if you were lucky enough to be loved by her how dare you forget that gift.

Screw time moves on or life changes she was a gift that you should forever cherish. I’m not understanding today, not being forgiving I’m raw I’m angry and I don’t understand.

My beautiful beautiful Livvy how can it be 13 years since your light left this world? How can my heart still continue to beat without you. I still feel betrayed by my own body.

I don’t understand why the world continues to turn without you. Why your time was so short? Why why why?

Maybe tomorrow I will find my peace again but today on your anniversary I’m angry, I’m sad and I’m lost without you. 9 and a half years will never be enough.

I know you wouldn’t want pain for me and I do try my sweet child, I do. But the hole in my heart will always be there aching for it’s missing piece.

I know you want me to have joy and maybe tomorrow I will again but today, today I allow myself to be real, to be in truth. To tear down the veil of pretence and grieve you wholeheartedly . To let the missing pour out of my heart, to cry, to shout, to scream, to just miss you my beautiful girl.

To just miss you.

Still

My head hurts, the noise level just seems to be getting higher snd higher.

People talking, screaming to be heard over one another. It really feels like it’s a world of who shouts the loudest, wins.

When did we stop listening, holding out for the sweet silence of a moment. Waiting for the small voice of our intuition to speak to us before we spoke?

Holding our own counsel?

I know I can be the same reacting before thinking. Engaging my tongue before I engage my brain.

I think lockdown has changed me, the silence whilst often isolating was also freeing. I don’t have to be anyone but me, no illusions to fulfil beyond the ones that hold truth.

The quiet, the time to be still. I realise now how much I need it and how much it calms my heart.

I sometimes wonder if my heart is attached to my life the crazier it gets the harder it beats. Yet that would make some kind of sense, yet as I lie in my bed praying for sleep my anxiety has other plans.

I’m breathing deep but insomnia is becoming a fast friend. I know we all have periods of this but recently the noise has begun to hurt my brain.

This is this

This has to be

Covid, petrol shortages, empty food alises. Why does 3am feel the best time to worry about them?

Hospitals struggling, NHS at mass. Drs and nurses once being clapped are now being condemned.

Unfair, unkind, untruth

People reacting without researching, laying blame at the accessible rather than at the feet of those that hide away. Those that hold the responsibility.

Oh mind please

I just want to sleep

I just want to be still.

I see the dawn is coming and before long the sun will rise.

I need some rest

I need my mind to just quieten down.

How do I be still in this crazy world, how can this fallen world learn to stay true?

Joining in with Five minute Friday

Rabbit hole

Have you ever found yourself falling down a rabbit hole, I do often. In fact it’s something I recognise about myself that when something interested me or intrigues me I have to learn more. I can lose hours to learning more, researching and trying to understand.

You see I’m not a face value person, just because someone says it is doesn’t make it true. It’s the reason I have struggled at times with religion, society norms and in general life.

I mean even the history we learn has been written by someone with bias. In fact the way we view life is with some form of bias, our upbringing, the beliefs shared, even the political landscape of our country.

It’s something I struggle with a lot hence the falling down rabbit holes often. I mean if something is said, who said it, why did they say it and where’s the evidence?

I love to read and learn and this is something I’ve always enjoyed but sometimes it would be nice to just say it is because it is.

I often wonder is my brain is strange, the way it views everything with a little mistrust. I really don’t understand people when they quote me the Daily Mail or some other media outlet as truth, I mean come on. You do know journalism is bias from the outset. Be it the ownership or political leading or the blatant scandalisation to sell more it should always be questioned.

But beyond bias I’ve realised that the world is so big that I have hardly touched the surface of my understanding and knowledge. This is exciting and sometimes upsetting I mean I like to think of myself as knowledgable but the reality is I don’t have a clue. I am knowledgable in my small piece of life but my goodness they is so much I do not know. What if I believe something, yet more knowledge would show me I was wrong?

Do you ever feel this way? That you have so much to learn? That you actually don’t know enough?

See rabbit hole.

I often struggle with anxiety and sometimes I do wonder if it’s because I cannot stop the thinking. Throw away comments often get stuck in a loop in my mind requiring research, understanding often beyond what I need to know. Reciting of conversations seems to be a hobby of mine.

My husband frustrates me to my core he doesn’t think past the here and now. He can lose himself in TikTok for hours, get obsessed about a new car and do research for this but when I ask him to think beyond his immediate world he isn’t interested. “Why worry about what I cannot control” or the worst one “just stop thinking about it”. I mean come on as if that’s possible. He frustrates me partly because I would like him to think a little more and share the worry and stress but mostly because I’m just completely jealous.

I’ve always been this way, when I was young and I asked my Granddad a question he would encourage me to either go to the library and read books on the subject or ask others and get a variety of viewpoints. I loved our conversations they could be so random yet always interesting. He never allowed me to view the world one way, he would remind me that everything’s is dimensional and we need to know all the dimensions to make an informed decision, ooh I wonder if it’s his fault my mind has no off button ha ha.

Beyond the sometimes brain exhaustion and anxiety I do love my inquisitive mind. Yes sometimes it breeds anxiety and fills me with fear but I do love my rabbit holes and learning. One life doesn’t have to mean one view of the world, we are a world of so much culture and beauty and yes a lot of darkness and hate but even that grows from a bias, a different view that I maybe cannot understand unless lived.

In the special education needs world we often say that all behaviour is a form of communication but to be honest I think this concept is wider. The way we behave is often based on what we have learned, our actions based on what we believe. Our beliefs start with what we are taught. So the way we behave is communicating who we are.

So to understand one another, we need to understand the lives we each live.

Rabbit hole anyone?

Content

Oh the irony of today’s 31 days of October prompt “content” today I’ve felt far from content. You know those days where your mind betrays you. When you thoughts are telling you that you are useless, mocking all that you are. Convincing you that you are not good enough, you are unloved and unwanted. Also add a awful headache and vertigo and that has been my day.

That has been my day feeling far from content.

I turned to social media asking my friends for the words, quotes, scripture anything that brings them strength because in all honesty I have needed it. Some of their quotes reminded me of my strength, how to breathe, how to be but still I feel lost.

“As rainbows are forged from sunshine and rain, so our lives are a mixture of joy and pain. If we bear with the darkness and learn from it too the rain clouds will part and the sun break through xx”

“Not by might, nor by power but by my spirit says The Lord.”

Zechariah 4.6

Why are our minds so cruel at times?

Contentment felt a myth, something for others but for me.

Then this happened

As this boy snuggled up to me, As I felt his heart beat next to mine,contentment was mine.

I am content.

Need

October is Rett syndrome awareness month and I need for more people to know and understand and fight with me against this devastating condition. I need people to remember my beautiful girl, my wonderful joy giving daughter who my heart aches for. I need to celebrate her life and the wonderful nine and a half years I had with her, whilst also praying desperately for a cure for those suffering with this condition right now.

I need people to realise you cannot walk away even when your heart is broken. You have to, no you need to fight, fight for every child, fight for the hearts of every parent.

My arms are empty due to Rett Syndrome, in Livvy’s memory I won’t give up until there are #nomoreemptyarms.

Then there was silence

I want my son to matter. I want him to be spoken about.

I cried, I am so frustrated with myself but I cried.

On Friday 10th September 2021, I attended the DCP parliamentary event to raise awareness of the impact of Covid-19 on disabled children and young people. As a parent carer I was asked to discuss the impact of Covid -19 on our lives. The event was hosted by the lovely Mary Foy MP and the fantastic DCP staff.

I had been given the list of questions before the event, I had my answers prepared, I so wanted to be professional and get across the impact of how Covid-19 has affected our lives, but as soon as the question was asked I cried.

I cried because I had listened to the young people as they shared how they had been affected by Covid-19, their words, their struggles, I cried.

I cried because there I was asking, begging parliamentarians to see my son, to see me.

The week of this meeting we had been away to Yorkshire for a few days and we had to return because of Daniels need for bloods and his levels checked. We also came home because we couldn’t afford to book an accessible place to stay and we were physically broken.

The night before the meeting I had held Daniel tight as he tried to breathe through another panic attack. Why should a seven year old feel so much fear?

The morning of the meeting my back had given up lifting Daniel as we still wait for his hoists and adaptions to be done nearly two years on from the planning, Covid delays.

I cried because I was exhausted and I was tired of pretending to be brave.

This event mattered, it was an opportunity for those attending to hear firsthand the impact the pandemic as had, not the numbers, but the people. It was important to give the parliamentarians the opportunity to hear our stories but also to ask us, how, why and what could be done. To reach the ears of those that can effect change, their voices heard.

I cannot find the words to do justice to the impact of Covid- 19 on my family, on Daniel. How do I find the words to describe the fear of a young boy who felt abandoned, who felt forgotten? A boy who has been hospitalised due to separation anxiety, the fear that I will leave him like others. How do I explain the impact of watching my daughter sob heartbroken because her baby brother is reaching for her and she cannot hold him, cannot hold him close and tell him it will be ok, because its not.

How do I tell you about the fear that my son may get this virus and that it may take him from me, the anxiety that crushes my chest every time I have to engage with the outside world? What if I caught the virus, who would care for him, who would love him the way he deserves to be loved?

Words are inadequate when I see his body stiffen and his pain levels raise due to no physiotherapy beyond what I can do, but I am not a professional. Sitting in a wheelchair that is crushing his chest so that his breathing is harder, new wheelchair delayed because of Covid.

What words describe the exhaustion of my husband and I managing a 24 hour care plan with no support, sleeping in shifts, broken, scared and exhausted. Our beautiful boy dependant on us for everything yet our human bodies were failing.

Covid-19 has impacted so many, I am not trying to underestimate that, but I have sat watching our politicians on the screen waiting, praying for them to talk about my son and those like him. To mention the parent carers isolated at home, yet no words are spoken for them.

This meeting mattered and I am annoyed I cried but how could I not, I am broken, I am isolated and I am angry that my child was forgotten.

” I want my son to matter, I want him to be spoken about”

This meeting was to highlight and raise attention to the research and report published by the Disabled Children’s Partnership

 Then There Was Silence – brings this research together alongside new analysis and an evaluation of how the voluntary sector responded to the meet the needs of children and families.  It draws on the experiences of countless families, through surveys and interviews, as well as information obtained through Freedom of Information requests and other research.

Key findings in the report are that –

  • Children and families have been isolated and abandoned; and not been listened to.
  • Covid restrictions meant services were stopped or reduced; and many are still slow to return.
  • Mental health and wellbeing of all the family has deteriorated.
  • Children’s conditions have worsened and needs become more complex; delays in assessments mean needs haven’t been identified.
  • The charity sector demonstrates agility and flexibility and was able to extend its reach to help support families.

As a result of our findings, we have identified five vital steps for central government, local government and the NHS.

  1. Prioritise the needs of disabled children and their families within covid recovery plans and programmes.
  2. Tackle the backlog in assessments and ensure that children’s needs are re-assessed in light of missed support during the pandemic.
  3. Ensure the right support is in place for all children and families, including education, health (including mental health), therapies and equipment.
  4. Take a whole family approach to assessments and support, including siblings. This should include the provision of respite/short breaks and opportunities for families to take part in activities to overcome the isolation felt by so many.
  5. Invest in disabled children’s health and care services through the Comprehensive Spending Review.

This report is the tip of an iceberg, Covid-19 has only highlighted a system that was already failing, underfunded and uncared for. Children and young people with disabilities matter, they deserve to live a fulfilled life whatever that may look like. They deserve love, compassion and the chance to achieve. But most of all now as we try and return to some normality of life with Covid-19 these children, these young people need to heard.

My son matters, hear him.

Care

It’s 3am, I’m exhausted but my son just cannot settle. The awful panic attack he had earlier today at school is fresh in my mind and on my heart. The constant swallowing he is doing makes me realise we are not fully over it. The professionals are calling it separation anxiety, I just call it heartbreaking.

I hate that his history has such an impact of his future. How lack of care can leave such fear?

I’ve read the adoption books, studied to degree level the trauma publications, but none cover him. The complex medical missing in the pages of attachment and trauma. I guess children with complex needs don’t suffer with emotional issues, cue a eye roll of frustration here.

It’s strange but sometimes I feel guilt for not being there at his birth, absurd I know but how my mama’s heart wished he had never to feel unsafe, alone, abandoned. I do wonder if other adopted parents feel this way? I know it’s not rational but love and rationality don’t always go hand in hand.

Oh my heart, how I love my boy, my exhaustion right now pales in my love for this sweet sweet boy. Oh how I wish my love could stop the pain, would take away all fear.

My arms ache, he isn’t a baby anymore, his weight is heavy on my shoulders. His fear is heavy on my heart.

I can hear his breathing now, he is falling deeper into sleep. I need to follow him tomorrow is a busy day.

I’ve spent sometime tonight praying over him, my prayers seem to bring him peace. I ask God to heal his fragile heart, to take away his fear but mostly I give thanks that he found me. Thanking God for the honour of caring for him and the gift of loving him.

Joining in again with five minute Friday.

Serendipity

#hopewriterslife

Day 4

Someone once told me that maybe I should see my life as one of serendipity, that everything I have faced has been a journey to the beauty that my life is blessed with now. It’s a image that’s pretty and sweet but it’s not one I can buy into .

I just cannot or will not see the pain I have faced as a part of a bigger plan. Whilst I am so blessed to be Daniel mama’s I struggle with Livvys death being part of that journey to him.

My disability has allowed me to follow my passion to write but is the writing worth the constant pain?

I think life is a journey that we have to take and yes some moments may just fall in to place but it’s not through serendipity it’s through choices we make. It’s through being brave when scared and it’s from holding on when it’s so much easier to let go.

So whilst I think serendipity is a lovely sentiment it’s not for me to view my life like this.

Explore

Day three #hopewriterlife

I never thought I was one who wished to travel. I never got the itchy feet or desperate need to go exploring. But I’ve realised I hadn’t learn my passion yet. Over this last year my son Daniel has become obsessed with animals and veternairy programs and from joining him in watching them I have discovered a desire to go places and explore the wilderness. I have fallen in love with places from Yorkshire to the YukonI. want to go visit the places that we watch. We started with the beautiful Yorkshire last year and I have fallen completely in love and seriously would pack up now if I could. The beauty of the area has literally enriched my heart.

I want to go see the animals in their natural habitat or as close as possible. I want to explore.

Actually I want to explore more than I have ever have done and I mean ever before. I think sometimes you have to find you to find out where you wish to go. Over the last year along with Daniel I have got lost in the learning of Gods beautiful creatures. Watching, learning has left me with a desire I never knew I had. I mean I’ve always liked animals but never wanted to know them as I do now. The idea of just waking up surrounded by space and animals just sounds so wonderful to me. Forget the big cities they have never held excitement for me, give me mud, grass and air I can breathe in deep.

I think it’s so easy to just assume you should go where others go. The places chosen by others do not have to be your places. Understanding this has allowed me to understand me more and the places I want to explore.