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.

Windfall

When I first saw the word “windfall” my mind went straight to financial gain. How this last year or so has been so hard financially that a windfall of money would be so welcome. I started to get lost in all the things I could give Daniel, how his room would be amazing and his storage space completed. How he could have weekly private physio and so much more. How I could support the girls, get them secure and happy, the list is endless.

Yet I found myself realising that whilst that would be amazing I do realise that my family are already my windfall.

I have been blessed in life by my children, four beautiful daughters born from my womb created in my heart. They are such gifts and for a long time I could never imagine anything beyond them. Then Daniel entered our life not via my womb but from the gift of adoption. My windfall just keeps extending.

If I add my husband to this windfall I do give so much gratitude to the man that puts up with me. A man who cares, who protects and a man who makes fatherhood look easy.

My windfall

My family.

Start here

I’ve decided to try and follow a January prompts writing plan. This year is for me to be about learning to enjoy writing again without the pressure of a false idea of perfection.

So here we go.

January 1st : Start here

Start here at the beginning, this should be a time of excitement and anticipation yet I always struggle to start anything. The fear of failure looms above me like the dark cloud on a miserable day. Expectation breeds anxiety inside of me, I’m scared to fail before I even try.

I’ve learned a lot about myself this last year especially. How I have build up false accounts in my mind to protect me. I had convinced myself of so many falsehoods, hiding myself from judgement or the pain of broken promises.

I’m examining these lies I’ve told myself and trying to work out what’s truth from the protective façade.

From simple things like I don’t like craft to places I have convinced myself I don’t wish to visit. Unpicking the pain and brokenness and trusting myself to make my own judgements. Not allowing the past to define my future.

This may just sound vague and that’s ok. Todays not the day to open wounds in a public arena but a day that I start to allow myself to heal.

Trusting myself to feel the rejection and stand strong in my own truth.

Believing that I am ready to finally allow myself to be me.

So here on the first day of the new year, I allow myself to begin to heal.

To begin a journey of new understanding.

Let’s

Start here.

Let’s find me.

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.

Melancholy missing

Olivia loved Christmas, she loved the decorations the music, the food. She loved opening her presents and anybody else’s she could get hold of. She loved when family visited as long as it was group at a time, too many overwhelmed and she just enjoyed the magic.

I think back to the Christmas past to when the girls allowed me dress them in matching PJs, fancy outfits for Christmas Day and for the most part I remember the laughter.

We had to change our Christmas tradition a few times, the girl who loved people started to cry and demand that they left. It took us longer than it should of to realise it wasn’t the people that were causing the upset it was the lateness of Christmas dinner that was causing the tears. So we switched our Christmas meal to Christmas Eve and we had grazing food for Christmas Day. Livvy loved grazing food and started to love her grandparents again when food was readily available ha ha.

When we lost her we had to change back to the traditional Christmas Day meal I couldn’t cope with the reason for the first change not being here. The pain of lost made it just too hard to handle.

Livvy loved the tree, a little too much at times but I loved her excitement. If I’m being extremely truthful I find it a little hard how chilled Daniel is to Livvy’s chaos. I know I shouldn’t think this way as every child is different but I think I just miss the excitement the joy. I mean the girls are ok but they are all grown up now and don’t scream with joy when they see Santa spoilsports.

Christmas is different, not a bad different but sometimes a missing different. I have had to take time to find joy in the season again which in all honesty has been a work in progress. I found my joy through the children and Daniel well lazy bum Daniel is just too chill at times.

Gosh does that make me sound awful, I hope not.

Just sometimes I wish I could find someone hiding chocolate biscuits down the side of their wheelchair again, listen to stories of teachers about the same biscuits disappearing in class. I wish I could see that grumpy face when someone put a Christmas hat upon her head and the complete joy of the angel that wouldn’t keep still in the Christmas nativity.

I think the truth be told I miss my Livvy Christmas. Livvy radiated joy, you could never be cross, her sisters got away with murder because as were telling them off she was howling with laughter. Actually Daniel loves it when others get into trouble I have some mean kids ha ha.

I miss her smile as she ripped open the presents often throwing the gifts on the floor for the fun of the wrapping paper. I miss the paint coloured mouth after school had tried to do arts and crafts and Livvy had just tried to eat anything and everything.

I miss singing our Girl Power CD in the car so loud, mostly all American songs that no one else here had heard of. I still play those songs to Daniel. I mean parachute girl is a classic.

I guess I just miss my girl, Christmas isn’t the same without her. It’s different and whilst different is still so special it’s obviously going to come with a little melancholy missing.

So whilst I am so grateful for the memories of Christmas’s that I shared with my beautiful girl. I am allowing myself to miss her a little. To miss her throwing her arms around me and squeezing me tight, yes she may have also been biting my shoulder at the same time but love is love. I miss not having to hide the Christmas biscuits and having to put anything breakable out of her reach. I miss her smile, her energy but most of all I miss her unequivocal joy and the contagious laughter that filled the air.

Right now in the uncertainty of the world, the busyness of life and the gentle Christmas exhaustion focus on the memories. Whatever Christmas may look like for you all this year please embrace it. Make the most of it and fill your memory banks to bursting, because one day these memories will be the gifts you have given yourselves, believe me. It isn’t about the number of presents or the fancy pants decorations it’s about the moments that became memories.

Merry Christmas

Hope Day

Yesterday we received the news that the The Joint Committee on Vaccination and Immunisation have given approval for a low-dose vaccine to be offered to vulnerable primary school children aged 5-11 years old. This news has literally had me dancing around my sofa.

I finally feel hope that one day soon Daniel will be able to live his life fully again. This is something I have openly campaigned for and today my heart is so blessed.

Throughout this pandemic we have heard that Covid 19 does not adversely affect children and whilst this has been great news for the majority there have been thousands of parents, carers and children like myself living in fear.

My son Daniel has complex needs in total he has over 15 diagnosis and a number of them affect his immunity and his ability to fight infections. He has been hospitalised numerous times due to the common cold so you can imagine the fear Covid 19 has brought to our door. The only way I can describe it is that for the last 22 months I have been unable to breathe deep. The fear has closed up my chest in panic and anxiety and I know I am not alone. Thousands like me have lived in fear, hiding away, not living our lives fully to protect those we love.

Campaigning to get this vaccine has been hard, sharing my heart, my worries, my fears to the country in hope of having our children’s voices heard has been scary.

Yesterday’s decision has made this all worthwhile.

I have spoken about children like Daniel as the “forgotten children” today we can say we were not forgotten and we were heard and we were given hope.

I now have hope for a vaccine that will help protect my son.

Hope that soon Daniel will be able to live his life fully again. Return to school, return to his therapies, visit with his animals and get hugs from those he loves.

Yesterday was a good day.

Today is a Hope day.

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.

That mom

Oh “that mom”.

I am “that mom” who will fight for her child, who will spend hours studying the law making sure it is being followed.

I am “that mom” that expects the best, I give it so why shouldn’t you?

I am “that mom” who informs you of legislation and legality you are just walking over and will hold you to account.

I am “that mom” who refuses to stay quiet just to keep the peace.

I am “that mom” who will not settle for your excuses.

I am “that mom” and for a long time I allowed myself to feel awkward about this and I accepted the “over emotional “ label used as an insult towards me,

but no more.

You bet I may cry when discussing how fed up I am of systems and people letting my child down, my frustration often comes out in tears. This does not make me weak.

You bet I get upset when people feel it’s ok to say things against my child or my family., wouldn’t you?

I will get angry I have ever right to.

But most of all I will fight.

I will fight for my child to be treated with respect, I will not settle for using their anxiety or struggle against them.

They show up so you better.

I will stand up to have the best for my child his disabilities does not make him less and I dare you try this on me.

I will not accept you setting limitations on my child, no chance.

If being “that mom” makes me unpopular well that speaks more about others than me.

If wanting the best is wrong for my child , then this world needs serious work.

So I will wear my “that mom” title with pride because that mom loves her children with all that she has and that is the mom I am happy to be.

That mom.

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.