It’s to hard

When I started my first blog in 2008 it was to share my life as a mom to four amazing girls. My third daughter Livvy, had a neurological disorder called Rett Syndrome. I wanted to share how life with a child with disabilities was hard but also one full of joy. Well as the irony of life is that joy quickly turned to sadness when I lost my beautiful girl to a rare virus that happened due to her disorder and my heart was broken into pieces. It was then I was ready to close down my online space and disappear into the pain of my grief but I was encouraged to share my heart, to share my pain in hope that maybe it would make others facing the same thing feel less alone. This is what I did and I have many moments that I’m so grateful that that’s what I chose to do.

Over the last 6 years the story of my life on these pages was changing, yes I was still grieving for Olivia but through the presence of a special handsome little boy my life began to fill with joy, with laughter and with hope once again. Daniel entered my life, an emergency weekend placement that became my forever son. My beautiful, beautiful boy. Yes he had his mega list of complexities but more than that he had a smile that blessed my heart and a cuddle that made me feel whole again.

Yet I didn’t get to feel whole for long because on my 46th birthday my heart was tore to pieces once again. On the 27th April 2022 Daniel went home to Jesus. The virus known as Covid 19 claimed another life., it stole my beautiful boy.

I have no idea what to do now, my purpose has gone. When Livvy died her sisters were so much younger they needed me. This time they are adults and in fact I really need them. You see I’m lost, I’m hurting and in all honesty I am broken. I have no idea or desire to do this life without Daniel. Through the Grace of God I survived losing Livvy but right now I have no idea how to survive this pain.

Daniel needed me in a way that allowed me to be free. To allow my heart to live its destiny of loving hard. Daniel taught me how to use my voice and to advocate for him and all children with disabilities. To not hide any more but to shine in loving him.

My light isn’t shining now. I am so very lost. Do I return back to these pages and share my heart once more or have the words already been said.

Will the story read too familiar?

I have no idea, I really don’t. How do you journal the lost of another child? Do I really or should I really put words to the devastation I feel? Will putting them out there for others to see blow back at me. I do not know.

All I know right now is that I’m so very lost, I don’t know my purpose anymore and my heart, well it’s forever broken.

I miss my gorgeous girlie.

I miss my beautiful boy.

This life is too hard.

On the cusp

Wow what a feeling as we wait on the cusp of a new year. The feeling of trepidation, the tenderness of maybes.

I’m sure you can all think back to March 2020 when we first went into lockdown. That feeling of temporary, if we do this now in a couple of months we will be back enjoying life to the max. Well I guess that wasn’t to be, 2020 was a year of sacrifice. Sacrifice from the NHS, delivery drivers, care workers, shop workers all the key-workers, they showed up so we didn’t have to. It was a year when we celebrated them, thanked them and was grateful.

Fast forward to 2021, the year I like to describe as our countries toddler year, tantrums were thrown, toys flung out of the pram. Rule breakers patting themselves on the back and lies spewing from those in power like a child on the waltzers after candy floss. It was a year of divisions and more sacrifice again from the doctors and nurses and the incredible NHS. A year of selfishness from those who assume they deserve to break the rules, that were there to protect all. Those that don’t care beyond themselves.

Yet and for the most part it was a year we had hope, the vaccine was created (thank you scientists). We had a way to protect ourselves and those around us. Yes some have decided that they don’t want the government to track them ( I mean they declare this whilst holding a mobile phone in their hand but hey ho) but for the most of us we celebrated a way to protect those we love. To protect the free and fantastic NHS service we have and try to have hope for a brighter future once more.

So where are we now, as I said before on the cusp, omicron has felt like a punch that is delivered to the back of a fighters head after the bell had rung and we were returning to our corners. Normality felt in our grasp then wham here’s another variant to add to the growing Covid 19 vocabulary. It sucks but again the hope is there in the science, can we just say thank you again to the scientists.

I have no idea what 2022 is going to look like, I pray that the vaccine rollout for vulnerable 5-11 year olds happens swiftly. I pray that the NHS and the care system gets all the support both financially and morally that it deserves. I pray for a new normality, one that has taken the lessons of the pandemic on board.

People matter not things.

Time is not guaranteed so love hard.

Gratitude is free, kindness is free.

We are more than the jobs we do, the money we make and the places we travel. We are more creative than we realise and hey maybe a few of us can now bake bread.

In all seriousness, we have all faced some mental battles, show me one person who hasn’t throughout this pandemic. If normality is ours again let’s not lose what we have learned in this time. Let’s not waste the painfulness, I mean growing pains hurt.

So as we ring in a new year, let’s go quietly in 2022 with hope, gratitude and kindness.

I wish you all a happy, healthy 2022.

Christmas present.

I cannot believe it’s Christmas in a few days. I have struggled with Christmas for as long as I can remember without going into details I have finally started to understand how childhood trauma can create a fear that may not seem reality to most but to those who have PTSD can be often overwhelming.

This is me.

I’ve tried for so many years to create the perfect Christmas to break the patterns of fear in my mind and to make sure those patterns were never created for my children. I wanted their memories of Christmas to be filled with wonder and excitement. I believe for them I have done this for myself it’s still a game of pretend.

Whilst I love the illusion of Santa I have never played the you better be good card on my children. The gifts they receive on Christmas Day are those bought by those that love them. We honour the tradition of Santa but also we celebrate the birth of Jesus. Yet there is no guarantees on what will be under the tree, yes we have listened to your wishes but also it is what can be afforded etc etc. But for me it’s about teaching the children about the love of the season, not making promises I cannot keep.

I listen to my children and live to see their faces when they receive something that had mentioned a while ago, it’s not about the gift it’s about the being heard.

This Christmas I’m struggling, it’s seems fear is the only thing I’ve managed to wrap and place under my tree. My anxiety has been on steroids I’m so tired of being fearful. So fed up of the nightmares of Christmas past I really wish Jacob Marley would just past to the light and leave me alone.

Christmas spirt just seems to be further away then ever. Yet for some reason this year my acting skills have left me I cannot pretend anymore I’m broken. Please don’t ask me what I want for Christmas I cannot cope with expectations. I was working on them but that Covid bitch stole my progress along with everything else.

I just don’t want to engage with the excess of Christmas I just want to hold Daniel in my arms and read him stories, watch some Christmas films and just be. I don’t want the noise, I want the calm and the peace. I mean Christmas is the celebration of the birthday of the prince of peace so why shouldn’t it be tranquil and gentle.

What do we have to go big and loud?

Why does it have to be too much?

Why does it have to be so full of fear?

Covid of course has done a dirty again on the season along with Christmas carols came the rising numbers. New variants, new restrictions and a new dose of blooming fear. I mean can Santa even visit if he has to quarantine after every sleigh flight? Seriously though how can people build joy without knowing what will happen.

It’s sucks it all sucks.

Yet I’m going to try and fight back, fight through the memories and try and change my own thought patterns. Try to learn to love the season again. Maybe understanding and acknowledging the past will allow me to fully embrace the future. Obviously working hard on your mental health in the middle of a pandemic hasn’t been easy but what else do I do with all this down time it’s not like I’ve been able to go anywhere (yes there is bitterness there). Covid is like a dodgy ex you think he is going away but no comes back with all the extra drama, showing up when unwelcome, bringing chaos and pain with it.

Yet allowing myself to feel has been worth it, sometimes the memories and emotions have felt more than I can face, but face them I have and although I may have boxed a few for another or never time, I have learned more about myself than ever. I know who I am deeper than ever before. Which is a mixture of bad and good, I mean we all have things we wish to change about ourselves.

So I am going to enjoy Christmas not in the excess way of the tv adverts or holiday promotions say it should be but our way. I am going to curl up under a blanket with Daniel and so many stories to share. I am going to veg out on the sofa and watch Christmas films that are cheesy and full of hope. I’m going to enjoy good food without the expectations of fancy tables and decorated plates. I’m going to cook extra and bless my elderly neighbours with a Christmas dinner I hope they enjoy and I’m going to breathe deep.

I’m allowing the past to wash over me and build myself memories that are different. The past doesn’t have to haunt you, you are allowed to leave it when it belongs in the days gone before you.

So bog off Christmas past and hello Christmas present, please leave the chains behind you.

The veil of pretence

What is it about the early hours on a hospital ward that makes you feel so alone? Yes there is the hustle and tussle of people in the other rooms, the pacing of the nurses as they walk their endless steps up and down the corridor. Even the constant beeping of the machines all which should make you feel less alone but actually have the opposite effect.

I’m going to be completely vulnerable right now and tell you along with the isolation I feel fear. Right now I feel like the weight of the world is on my shoulders. Daniel is doing ok but the residue of previous visits, previous trauma tastes bitter on my tongue.

I can hear Daniel swallowing and for some reason I’m swallowing with him. Anxiety is making my mouth go dry. I’m lonely here in this side room yet I also know I’m not on a holiday and the reality is I’m extremely grateful for the individual room.

I think this is something that parents of children with complexities don’t talk about enough. The fear hospital stays bring with them. The isolation and weight of the world we feel when we are here, but also the echo of past trauma and how even though the situation is different it doesn’t allow us to breathe deep.

My husband tells me to go home and he will stay yet I cannot it just doesn’t feel right, I actually feel like I’m abandoning my boy. He tries to explain that he is also his parent but I’m sorry , I do him an injustice as I cannot hear his words over my own fear.

I guess I don’t know what to say really or why I’m tumbling over these words. I think it’s just awareness that I really want to raise, for all those that watch our stories and seem to think we are used to our hospital stays, immune to our children suffering.

We aren’t, we are trying to hide our fear to calm that of our children’s. We smile and chat with nurses we have come to know and love but in reality would rather not see again. We survive because we have to, but each visit, each stay tears at our fragile veil of pretence.

For me right now the veil is torn, I’m struggling. Please let tomorrow be a better day.

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

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.

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.