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?
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.
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.”
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.
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.
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.
Prioritise the needs of disabled children and their families within covid recovery plans and programmes.
Tackle the backlog in assessments and ensure that children’s needs are re-assessed in light of missed support during the pandemic.
Ensure the right support is in place for all children and families, including education, health (including mental health), therapies and equipment.
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.
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.
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.
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.
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.
I’m scared of intentions, even those made with the best at heart. I’m fearful for making plans. It’s something I was trying to work on then Covid came to visit and how many plans have had to change, stop.
Growing up I struggled, I lived with a lot of broken promises, shall we do this next time forgotten by others not by me. Financially issues didn’t always allow things to happen that I could understand but sometimes out of sight out of mind was the stronger inflection.
So when plans were made I didn’t get excited I didn’t trust. So intention is something I hold at a distant.
Being a mom of a child of a complex child I know the best intentions can be easily changed only last week our holiday, our plans were cut short. But somehow that’s different that’s not through disregard or lack of respect.
I seriously struggle to make plans because I know my life circumstances often lead to cancelling or changing and I hate that someone things I cannot be bothered or do not care. So I stay hesitate and often say no in fear.
To me the word intention holds a responsibility to try and so when spoken by others I’m guarded. In therapy my goal was allow myself to get excited and I was almost there then blooming Covid came along.
I do want to know the joy of waiting, the excitement of what’s coming but for now I’m still a long way off but my intention oh the irony is to try.
Oh how I wish it would stop, the endless whirling in my mind. How I pray for it to be quiet as the noise it’s beyond overwhelming. I have no idea where or why anxiety decided to use my mind as a playground, but I wish it would move on. It effects every decision I make and I so wish it did not. What’s ifs, control my life and my heart. Fear is behaving like my best friend staying over and keeping me awake all night. Stop, be quiet just for a moment please. Just give me a second to work out what is true in my thoughts, give me a minute to know my heart without the fear weaving in it’s ventricles renewing itself with every beat.
Please be quiet, please stay quiet, let me unscramble my thoughts, let me breathe deep again. Anxiety you are not welcome here, it’s as if my basic defensives are engaging constantly against me. Fight or flight, fight or flight. How about love and rest?
When people ask me what I am anxious about, it’s seem trivial to just answer life, but the truth is right now it feels like every decision I make or need to make is a thread of the tapestry of anxiety.
Nothing feels straight forward anymore.
People tell me we have lived through some scary times but the word “through” makes me feel like it’s finished yet my fear is still constant.
This pandemic has done a number on me that’s for sure. I’m not over it, I still feel very much in it. The fear hasn’t been for myself beyond me catching the virus and passing it on but for the others I love. For Daniel my little immunity fragile gift, how could I not be anxious?
We need to move forward and get back to normal but can I return to a person I am not any more. Should we walk backwards after growth? Even if the growing has been painful and hard it’s still a journey we have walked. Turning back just doesn’t feel the right opinion.
But how do I learn to breathe deep once more, how do I learn to find my quiet in my mind?