My beautiful boy.

I have been asked by a number of people if I would share what I said at Daniel’s celebration of life and to be honest I wasn’t sure as it was me being honest and very vulnerable. Then I was reminded that’s what I do I share my heart to allow others to share theirs. So here is my speech please if you don’t like it keep that to yourself because this was literally just for my beautiful boy.

My beautiful boy, my son.

It is said that grief is the love that you cannot give so right now this pain feels validated, feels true. You see Daniel I love you with every breathe I take. From the moment I met you I fell in love, breaking all the rules but not caring at all. The day you officially came our son it was day that the the legality caught up with what my heart already knew, you were my boy, you were my son.

Thank you Daniel for reminding me of the joy in the world, for allowing me to love you with no restrictions. It has been a gift to be so needed, to be your safe space, to be your person. I’m not sure how to go on with this endless void in my heart but I will try for you. You fought to live with a strength that is beyond comparison, if love could have saved you well we wouldn’t be here today.

How I wish I could hold your hand in mine again, how I could run my hands through your thick crazy hair. How I could feel your head on my chest and your gentle breathing in the place your called home, my arms they ache to hold you. My lap feels empty and lost.

Daniel your Daddy misses you so much, his Grand Prix buddy or sofa naps excuse. How he wishes he could moan again about the number of clothes, shoes, coats you needed, well I believed you needed. How even his fear of animals was lost in your excitement.

Daniel Robert you were a gift, a mind so full of questions always wanting to learn more. Your love of animals was unbeatable, your desire to put your hand up a cows bum unrepeatable.

Your love of nature was inspiring, teaching us to slow down and really take in the glory of our world. We listened to the trees as they danced on the wind, marvelled in the bird song, and cherished the fragrance of the flowers.

Daniel you loved God with all your heart, how I will miss hearing you sing along to worship. How I wish you would try and shout over Tim once again in church . Our prayers, oh my our prayers how you prayed for those you loved with a compassion beyond your years. You prayed so hard for your sisters, for their happiness, their hope. I know you are still praying over them and hopefully having words with the big guy up there.

I used to call you my little old man, childrens tv or music you didn’t care for. The documentaries, zoo programs and of course your complete favourite the Yorkshire vet. I’m going to miss your Dad complaining, so sure that we had fixed a prolapse viewing for every mealtime on purpose. We didn’t but maybe now I will.

Oh Daniel my beautiful boy, You touched the lives and hearts of everyone who met you. Your cheeky Elvis smile, your dirty looks all part of your character that we loved. You were joy, hope and faith all rolled into one handsome cute package.

So many people here today will miss you, your nurses and your flirting, the hiding in your hospital room for sneaky cuddles, you loved them all. Your Drs all inspired by your courageous spirit and your ability not to do it the usual way, always the Daniel way. “That’s Daniel”

Daniel you were a gift to us all, you gave us all hope again, you taught us to love hard once more. Right now I’m not sure I will ever fully love again but I know that’s not what you would want from me. Not the legacy you would choose.

I will feel you Daniel in the wind that blows around me, In the flowers that bloom and in the dancing of the trees.

Thank you my son for giving me the gift of loving you. Thank you for loving me with a need unlike I have every known.

Thank you Daniel for being my son, my forever beautiful boy. Now go dance with Livvy and sit in the arms of Jesus until we meet again.

I love you x”

Dear Daniel

I did it again, I pressed my phone to call your Daddy to ask him if he had put you on your milk yet. Why is my body still waking me a month after we have lost you? Why is my normal no longer my own?

Oh Daniel there are not enough words in the languages of the world to explain how much I’m missing you. Even now as I lie here unable to sleep I know I haven’t accepted the fact that you have gone. I’m a mess, a complete utter mess and for once in my life I do not care. My mind isn’t full of wondering, afraid if others are judging me in my sorrow, I don’t give a monkeys it hurts, it’s agony.

The house still echoes of you, our home, your home, your scent still lingers on the air. I’m still using your shampoo as a body wash so I can smell your sweet scent of strawberries all around me. It’s running out, would it be weird to buy it again? Maybe I will search for an actual strawberry scented body wash. Maybe that’s a compromise. How I hate that word right now “compromise” it feels that’s all I am having to do. Grieve whilst trying to move forward. Rest whilst job hunting, always having to give a little when I really haven’t got a lot left anymore.

I don’t have you anymore.

Oh Danny, I know they will call me soon to collect your equipment and whilst I know you are free from the disabilities that made you need them, letting them go is part of an acceptance I have yet to reach. I’m scared of the emptiness their return will leave behind. I know I have to do it at some point, there is so much to sort out. Your wardrobe is full of new summer clothes you have yet to wear. No sorry clothes you will never wear. This sucks!

Your toy box is still in the living room, your book case full to the brim. Talking of books the new book written by Jacqueline Wilson came today, it shocked my heart. I had forgotten that we had put it on pre-order, “ A new adventure of the Faraway tree” do you think Moonface will still be in it ,maybe Silky too. We loved reading the original written by Enid Blyton together, I’m sure we would have loved this one too. Maybe when I get you home I will read to you. Is that a strange thing to do? Maybe I will just curl up under your blanket with Edgar and read it. Yes I’m going to cry, come on everything is making me cry. Do you know how hard losing you has been?

I guess I need to try and sleep, the irony is that now I have no one waking me at every two hours but I’m sleeping less than ever. I am hiding in my bedroom more than I should be, I’m not sleeping I’m just pretending you are downstairs with your Daddy. I know it’s not helping but let’s be honest nothing does.

Hey beautiful boy, I’m trying I promise I am. Giving up would be easy but I know you and Livvy didn’t teach me that way. Your both fought to live; I promise I will try to honour that. You guys need to help though, sprinkle me with some heart healing dust from heaven, how I wish that was a real thing. I remind myself that I “grieve with Hope” well I’m working on the Hope part, but I’ve got the grieving down perfect.

Oh my gorgeous handsome son, missing you is so so hard. Just to hold your hand in mine once more, yet I know once more is never enough, would never be enough.

So it’s been a month my dear boy, one whole month since your took your last breathe this side of heaven as you lay in my arms. As I held your body close to mine your spirit ran to Jesus.

Until my time comes, until I can run to you and Livvy.

I will miss you

Forever heartbroken

Your Mommy

Xxxx

My beautiful boy xx

Job hunting is painful

Ouch, my heart is beating so quick it’s a question a simple question.

Do you care for someone?

Job applications, oh my goodness when did they become so in-depth I mean I’m literally waiting for the question asking me my bra size. How much do employers need to know to see if I’m suitable for a job, why does the number of dependents matter? Are they only after those without. Then the realisation hits, I don’t have any dependents any more. My girls are adults they don’t depend on me. No one does, then to knock the realisation out of the ball park, the final question, do you care for someone?

Ok ok please leave me alone. Isn’t it hard enough that I’m applying for jobs I never expected to have. That my world looks completely different to the one I was in a month ago.

How much more of this pain can I take?

Oh my goodness how hard, too hard.

I know people have told me not to job hunt yet but obviously the bills still need paying and the day the one you care for dies, all payments stop. Giving myself time isn’t a option. Also the truth is time is something I have too much of right now. The days are endless and I mean endless. I swear my days are now made up of 48 hours not 24.

I need a focus, I need a challenge. I’m not the kind of person who can sit still I thrive on being challenged and I love being busy. Yes I have to learn some boundaries for my health and well-being but I need to do something. But what, and who am I now? For the last 13 years I’ve been a proud foster carer but after losing Daniel I cannot do this right now. Maybe in the future but not right now. I need something different, something that doesn’t make the familiar painful. Does this make sense?

But beyond being a foster carer who am I? I’m definitely not the dance teacher I was in my 20’s that’s for sure.

Could I do something in my passion, could I use my words to earn me a living? I would love that but have no idea how to make that happen.

Could I continue to advocate? When I write, speak and fight for equality and against discrimination the words form themselves. My passion allows the letters to fall from my fingers. It matters, I want it to matter.

So who, what and how?

If you haven’t caught up yet the reality is I’m in pain, I’m lost and I really want direction.

Any suggestions?

Any jobs offers?

Pretty please.

It’s just a van

It’s only a van I tell myself.

But it isn’t. It’s a symbol of the life we lived, the life we lost.

The boy we have lost.

This van was our escape to the Yorkshire moors, our spaceship to the land of green fields and so, so many cows. It was Daniels and with its return it’s another piece of my beautiful boy that I have to lose.

It’s not only a van, it’s a vehicle full of so many memories that I can never repeat. A vehicle with blemish’s created from adventures. Sand from the beach, leaves from the trees and a wheelchair now devastatingly empty.

Every piece of equipment taken away feels like a vicious blow to my stomach. I’m nauseous with the pain of loss. I know we don’t need them anymore but my goodness it’s just not fair.

We should be packed up ready to go visit with Daniels favourites, to feel my heart slow in it’s dance as we pass the border into Gods own country. I should be parked up by the river with my gorgeous boy on my lap feeding the ducks. Listening to the sounds that they make, laughing at Dads reluctance to come close.

How many “ should i’s” can one heart take, we are only weeks in and there has already been too many. How in the world can I survive a lifetime of this?

Grief is not new to me but this pain is unique unlike anything I have ever known, anything I have ever felt. It’s grief for Daniel, individual for my beautiful boy. Pain twisted in the memories that we shared, agony in the cuddles we won’t get to share again.

To say I miss him feels like the understatement of my life, I literally feel like I’m walking about with my heart missing. Breathing is pained by grief, my memories are torturous.

So as the van leaves the driveway for the last time. It takes with it a dent of my bollard hitting moment. The scratches of bushes too close to the sides but most of all it takes away another part of a life that I cannot live again.

It’s not just a van, it was Daniel’s van

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.