Dear Daniel

Dear Daniel it’s been over three months since we lost you to the evil know as Covid. Three months since our world when dark, where I fell deep into the pain of missing. Life is so different and not in any way we like, yes we can go out when we want, sleep as long as we want but none of them mean nothing. My joy was found in caring for you, seeing your cheeky smile when you decided it wasn’t time for sleep, or watching your cheeky grin before you closed your eyes and pretended to sleep so you didn’t have to engage with others. Gosh I miss you.

I received a phone call today, a Secetary wanting to book you in for your appointment, having to explain to her that you had gone broke me into a million different pieces. Saying the words “my son has died” burned on my tongue. I cannot say this without the waterfall of tears that follow. I’m dreaming of waterfalls recently, I’m stood under the drop and the water falls on me, sometimes it beats at my body, I lose the air to breathe, it’s fast and it’s strong and it those moments I can think of nothing, my mind is full with the moment, the water wipes my mind. Then some times it’s slows to a trickle and as I wait for it to drop gently on my head, my mine is full of you. If you fancy working the meaning out Daniel let you mommy know.

I still haven’t got the hang of living without you in fact although my brain knows it my heart often refuses to accept it. I feel like shouting at God, “what the f@ck wasn’t one of my children enough? How many times do you want to see my heart broken”. Still waiting in his answer, still waiting.

You were my North Star and now I’m without direction. I mean you know you mom doesn’t remember her left or right so without you here to guide I feel like I have no chance. It would help if I knew were I’m supposed to be going.

I hope you are having some fun there, have you convinced Jesus about the need for a farm, have you got Livvy helping you with the animals. Like you Livvy loved the donkeys especially when they pooped.

Anyway my beautiful boy give your sister and big hug for me. I miss you both beyond words, I don’t understand why I had to lose you, but I hold you both in my heart, i wish it was my arms but my heart it will have to be until I’m there with you.

Dance on the rainbows and bounce on the clothes my beautiful boy.

Mommy misses you so much it physically hurts.

I love you to the moon and stars and beyond my sweet boy.

Always

Mommy xxx

Maybe you should wait?

Maybe you should wait until you get over it?

It?

Getting over it?

Right I have to touch on a subject that is really starting to drive me crazy. I recently posted about my excitement regarding my new job only to recieve comments or questions regarding “should I go to work if I’m grieving?

Is it too soon, are you ready?

Maybe you should wait until you get over it?

I just want to be honest and tell you how I feel how I feel regarding these comments and this field of questioning. Firstly full disclaimer I truly do believe you all mean well…

But and I mean a gigantic but….

If I was to wait until I stopped grieving Daniel I would never work again because grief doesn’t have a time limit unless you count eternity as a valid measurement. So whilst there will always be tears and pain regarding Daniel I cannot wait until I’m over something that I’m never going to be over. Olivia passed over 14 years ago and I miss her daily, far from over it. Grief is a lifetimes journey.

Also can I just state that my husband returned to work and the comments he’s received have been “it’ll do you good” “good on you” “fantastic it will be good to keep yourself busy” not one comment saying should he not be staying off work and grieving, or it’s too soon. All I find remarkable because believe me his grief is as strong as mine and his heart is as broken. Is this a gender bias, the man has to be the provider, well you know what I feel about gender bias and discrimination of any form.

I know myself well enough to know what works for me, what I need and there is only so long I can sit in a pit of misery and missing without it consuming me. I need a purpose,(Daniel was the best purpose ever). But having a reason to get up in the morning is something I need in my life. I live to serve, to fight for change, to make a difference, this is who I am. I cannot change the fact that Daniel has gone, you don’t know how much I would want to, if love could have saved him he would be still in my arms but it didn’t and all I can do now Is to try an honour my gorgeous boy by living with purpose.

Also I need to be blatantly honest here, with the cost of living so high and rising how can I afford not to work? Daniels death did not stop my bills. No one is going to pay for me to sit at home and grieve it just doesn’t happen in fact the opposite happens, the day Daniel died any kind of money or support we were getting died with him ( don’t get me started on this). So I have to go back to work.

I cannot do sitting around,it’s just not me whilst I will always be grieving my beautiful boy I also know that I need to be moving, to be achieving and thankfully I’m entering into a field that I’ve wanted to work in for a long time. A field where I hope I can make a different. A job I hope will bring me the purpose I need. Nothing will change how much I am going to miss my beautiful boy, the agony of missing him is mine for a lifetime. The only thing I can hope for is that I can make him and his sisters proud and for me returning to work is now a step towards this.

Who am I?

Who am I?

If you had asked me this question in March or even April I would have told you I’m a mom, a wife, a foster carer so in fact I would have told you who I am to other people. All moments or roles I love to be but I couldn’t see me. As a mom to a child with complex needs to forge yourself something beyond this is hard and if you have achieved this go you. But I was content and so so happy just loving and caring on my beautiful boy Daniel. Losing him has broken my heart but as well of the agony of grief and the endlessness of missing it has also thrown me into a pit of discovery. I’m using the word pit because (A) I didn’t want to be here and (B) I am literally having to climb out.

I don’t remember not caring for someone, it’s been probably the most obvious trait to describe me for decades. Some people get described by their sense of style, their humour, their fiery temper, me I care a lot, I love hard. Not something I’m ashamed of at all I’m proud of my ability to love hard but I haven’t ever explored a life where I didn’t hold that role.

Well until now.

Losing Daniel has changed me in so many ways. My heart is broken and that’s not going to heal anytime soon but it’s also made me face a decision I could never of imagined before. How to stop!

How i need to care for myself right now, how my heart needs to heal. Obviously I’m not going to change over night and of course I have three amazing girls and some equally lovely partners of theirs to love upon. But this is a love that doesn’t have a need attached to it. They are all so beautifully grown and independent so I get to love on them without having the dependance. Right now I have no one depending on me and it’s scary as hell but yet I am learning it can be liberating.

Just want to put a disclaimer here and say that I miss Daniel and Livvy with every piece of my heart, every ounce of my soul and I would give anything to have them back in my arms. Oh my I would give anything to have that gorgeous boy of many faces smiling upon me again. Or the girl with the mischievous spirit making me blush as she flirted openly with any man she felt was handsome. I would give anything and everything.

But life hasn’t played fair and this cannot be and until I meet them both again I have to learn to live again, live again for them but also because I deserve to as well.

So back to the pit climbing, here I am on a journey where I’m going to have to learn to live a life very different from the one I had planned. Slowly but slowly I am making my way out of the pit, sometimes I climb up and the walls give in and I end up smack back down at the bottom again but I will climb and I continue to climb , I don’t do giving in, how could I after the inspirational children I’ve had the blessing to learn from.

Right now I am facing so many different experiences, emotions, situations and at times they can feel overwhelming and scary. After working side by side with my husband for over 15 years we are now both separating out into different career pathways. Alan has been working hard and pushing his boundaries for the last few weeks. I have watched him struggle, to grief, to push forward and to prove to himself that he can and I’m so proud of him. I have just had a conditional offer on a position that will see me working in field I have wanted to work in since I was teenager, so yes quite a while. I still in fact have to pinch myself that I am going to work in this field as it has been a dream of mine for such a long time but always felt just out of reach. Even in this pit I can feel the excitement and anticipation of this new role. Yes the excitement brings me guilt but this grief journey is a right evil it never plays fair.

So who am I?

I’ve decided that right now I’m a work in progress. I’m a grieving mom this will me for eternity but I’m going to still strive for purpose, for joy. I’m still going to try and make the magic in the moments, partly to honour the gift of Daniel and Livvy but also because I know that’s what they would want for me and it’s what I deserve. I’m going to care that’s who I am, loving hard is my set position I won’t ever apologise for this. I am proud of this and as a wonderful wise woman told me loving hard also means I grieve hard and that’s ok my beautiful children are worth my grief, my pain, my missing. I’m going to strive for purpose but in a way that it doesn’t consume who I am anymore. People will always be able to depend on me, but not be dependent on me. I’m going to live life in which ever way that’s looks like, I mean right now if I’m honest I haven’t got a clue. But maybe the unknowing is part of the journey, who knows. I am blessed to be surrounded by wonderful people who are ready and willing to pull me out of the pit over and over again. Friends that really want to hear my heart, family who love unconditionally.

None of us know how long we have left on this planet and I know and have experienced this only too well, but I’m going to live, learn and love.

So who am I?

Who knows?

Let’s wait and see.

My son wasn’t a acceptable loss.

As always here on the internet we come across and connect with some amazing, inspiring people but also some truly awful trolls that need to return under the bridge they came from.

These last months I’ve been very open in my grief, transparent and vulnerable, to be honest the only way I know how to be. Yet in my vulnerability I have come across a few that just don’t or choose not to get it. They seem to find it acceptable that Daniel died of Covid because he had complex needs. He is one of the few they believe are “acceptable losses”. One going as far to say he was going to die anyway, I mean how dare they ! There is nothing ok with Daniel’s death, there is definitely nothing acceptable about him catching Covid through the ignorance of others. His death is not validated by the percentages. His death is heartbreaking devastating and I and many others miss him desperately.

Disability does not mean less and in a world that supposed to be one of progression this archaic belief is shocking and one that’s so ignorant.

What if those who have trolled me these last few weeks take a drive out and end up in an accident and find themselves disabled, do they at this point become less? Would it be then acceptable for them to lose their lives to covid? Of course not, their value doesn’t change by the ability of their bodies.

Yet I wish that these beliefs were only those of the under bridge ugly society but the reality is there are not. Disability is still seen in a negative way, a less way. Parents fighting for their children to get the same opportunities as their peers, equal opportunities in career development and growth. Support, care systems all so lacking and don’t get me started on the fact that equipment and aids that would make a difference to a persons life are classed as not needed, beyond the basic requirements or my favourite (not) out of budget. We live in a country where is ok for us to fund the second home of our politicians yet we have people unable to leave their houses due to a much needed ramp being beyond budget for this year. Human beings being left in pain using ill fitted or outgrown equipment being told of a two year waiting list. Yes disability is seen as less, people with disabilities are not valued as they should be.

Equality feels like a myth.

So I guess I shouldn’t be surprised that some keyboard menace decided to break my heart with their apathy. How they could chose to say the death of a seven year old beautiful boy was acceptable.

Still what scares me more is this belief that Covid only kills the vulnerable, those with underlying conditions. The numbers show different, the lives lost show different, marathon runners, sportsman, dancers, armed forces personnel all have lost their lives to the evil of Covid. Until this recognition hits home and people understand that Covid isn’t discriminative, it doesn’t care who it kills the number will continue to rise and hearts will continue to be broken.

As for my heart well pieces of it are in heaven waiting for me. Until then I will continue to advocate and campaign for a world where people are valued equally. Where disability is seen as difference ( I mean who wants to be the same ) but not a burden, not less. As for the trolls I know they won’t ever disappear as the world is full of bitter ignorant people but I can choose to hold on to the fact that I am so blessed, so incredibly lucky that I get to call Daniel my son. I will always miss him desperately because he did and does matter.

For my sanity’s sake I need a job.

Honestly I am at the end of my patience with myself, it seems I don’t know how to do down time. I don’t enjoy lazy hours and resting has a purpose to a certain extend. Everyone is telling me this is my time to relax, work on myself, grieve and any other chill out term there is out there.

I get it, Ireally do, I’ve faced a lot over the last few months, but I thrive on being busy. I get fulfilled by creation, by doing a good job, my being successful. The downtime has now turned into pure boredom.

I need a job desperately.

Financially of course I need to pay bills but more than that I need to start rebuilding my identity. It may not be what I had wanted, but I have no choice but to start creating the new me. I truly believe that there must be a purpose to my life and whilst I did believe it was Daniel and it was for a time, but now Sara has to redefine her life and work for me is a major part.

Interviews are scary though I will admit, I mean it’s been over 12 years since I was last interviewed so it is rather strange. I know I have the knowledge but the experience is really holding me back. I’ve achieved a lot in my lifetime but it’s hard at times for people to see this and often harder for me to evidence this.

Also my husband keeps making suggestions about me cleaning the house and cooking his tea for when he comes home from work. I seriously thought that old chestnut had moved on. Domestic goddess I am not.

All I know is that I’m hoping and praying that the interviews pay off and I get a job. I want to be occupied, I mean my days are endless right now. I want to have something to achieve again. I want to get tired by something rather than my own tears. I want to make Daniel and my girls proud. I want to be proud of myself.

Come on world give a girl a job please.

You cannot rush grief

Ok ok I’ve made a rookie error. You know this grief business, well you would think I would be be an expert. Losing three children, one would assume I would have this grief journey down. I wouldn’t need the map or sat nav; this journey should be set in my sub conscious, innate directions.

So why oh why am I finding myself trying to rush through to the end. You know the part where you find some acceptance and maybe a little peace. Come on Sara you should know better that this, there are no short cuts and no quick way through. There isn’t even a toll road that costs you a fortune but cuts out half of the journey time. Nope, no chance,not happening.

No matter how much you don’t want it to the pain of grief has to be lived, the reason why is simple , we love.

Right now it’s perfectly ok and right for me to be lost in the pain of losing Daniel. It’s correct for me to find every breathe painful in missing him. My tears should fall and my heart should be broken because I loved my beautiful boy, I love him, desperately.

Changing the sofa around, painting the walls even maybe putting his toy box out of sight may be what I need to do just to calm the waves but a fresh lick of paint won’t erase the memories of Daniel giggling on the sofa, holding him on my lap, snuggling into my chest, nothing will.

There are no short cuts in grief. What is it the Going on bear hunt book says “you can’t over it, your can’t go under it, you have to go through it”.

I know why I’m trying to push through the pain, the truth is I’m scared I won’t survive it. I survived losing Livvy by the love and need of her sisters, I am truly scared I’m not strong enough to survive losing Daniel.

I’m actually really scared of this darkness I feel.

My whole world changed with Daniels death, my identity as his mom, his carer, his nurse, physio et etc all disappearing with his last breath. He was, my purpose, my joy and my reason. My life was planned with him, I still cannot comprehend a life without him. It’s like my mind just won’t go there, a robot stuck moving back and forth “I just can’t compute, I just can’t compute”.

Oh gosh I’ve sat here thinking how better it would be to be a robot with no feelings, no emotions, no grief ; yet I wouldn’t be happy. I’m a person that feels intensely, if you are loved by me, well you get loved my me. I don’t do half measures. I tell myself I will protect my heart again and again but if I had of done that then I wouldn’t have had the gift of Daniel. I got to love and care for my boy for 6 years, I got to wake up knowing cuddles awaited me, that smiles that would fill my heart would bless my day.

I have spoken and walked through child loss with a number of people over the years ( too many ) and the one thing I tell them is it’s ok to feel broken, it’s ok to feel the pain, because you loved. Give yourself time and to be kind to yourself. This wasn’t how life should be.

Missing someone you love will never be easy and it shouldn’t be. This pain, this agony that I feel now it’s worth it, because I got to love Daniel and if I had to live this pain all over again for just one more moment with my boy I would do so.

So right now all I have to do is be, to be whatever I need me to be, to hold on and allow myself to grieve. There is no rushing grief, it sets it’s own timetable just like love does, as it should because grief is the love we cannot give and I love Daniel intensely.

Please tear down the curtain.

Give yourself time, be kind to yourself, the pain will ease. I know people mean well and I love them for it, but in all honesty I don’t want time, I don’t want to be kind to myself and the pain, well shouldn’t I always feel it? They say that grief is the love we cannot give so this agony feels right,

As it should be.

I know I’m not helping myself but right now I don’t want to. I’m missing Daniel with such an intensity that I can barely breathe. Everything I see, every room I walk in his absence is suffocating. Everything reminds me of him and how my heart is forever broken missing him.

I just want to scream at God to bring my boy back.

Please.

If you have a faith the pain of losing one you love often lands you in two camps of thought. The first is closer to God, you feel him closer, you find your comfort in his promises. You know that Jesus catches ever tear you cry. You know with a certainty that you will see you loved ones again.

Or the second camp, you are angry, so angry that you cannot believe God had taken the one you love. You tell yourself you cannot believe in a God who does this. One who is all powerful but didn’t save the one you hold in your heart. Faith becomes lost in the pain.

For me I think I’m actually going to make a camp number 3. One where I love God and I know Daniel is with him but one where I really am angry that he didn’t save my son. How or why is my beautiful boy gone from me.

I was thinking as I was writing this that often people speak of a curtain between us. That to trust that Daniel is still close to me and it’s only a curtain that separates the living from those gone before us. Yet I often thing of the scripture when it tells what happened when Jesus was crucified that the curtain was torn in the temple. I want my curtain to be torn. I want Daniel to be here not behind a curtain or in another room, I want him here in my arms.

I want that curtain torn down.

I want to kiss the top of his sweet head and I want to feel his heartbeat next to mine. I want to hold him in my arms once more. I want it as it should be.

I want

I want

I want.

Please

“At that moment the curtain of the temple was torn in two from top to bottom. The earth shook, the rocks split. “

Matthew 27:51

My forever eco warrior

Ouch it hurts, an email, a simple email has left me sobbing into my pillow. No names nothing personal so why am I so heartbroken? I will tell you why, it’s because of what should have been.

Let me explain I opened up my Email and clicked the first one it’s become such a second nature thing to do I didn’t even check before I opened. It was Fatface the lovely, gorgeous brand Fatface telling me all about the new collaboration between themselves and the Marine conservation society. The email says something like ( I deleted rather quickly) “let your little one help save the seas”. Well along those lines, it was hard to read through the tears.

You see Daniel loved nature, he watched documentaries from Steve Backshall on the sharks and he got so cross at the damage we were doing to the oceans and even his Easter bonnet design was going to be a Save our Seas one, complete with plastic rubbish and a trapped turtle. But we didn’t get to make it and unfortunately I won’t be getting to buy him these clothes and support this fantastic cause. So I cried and to be honest I’m still crying. Seven isn’t enough time and no matter how thankful I am for the years we had together, they will never fill the void of how much I miss my beautiful boy.

So here I am sharing this campaign not for any obligation and I’m not working with the brand but because I know Daniel would want me to. Take a look and if this isn’t your thing or isn’t suitable for you just remember we can all do something simple to help save our oceans and do it for Daniel because Daniel was and always will be my little eco warrior.

Baby steps

How i remember my girls taking their first baby steps. Kennedy completely bypassed crawling she was up on her feet before she was one. I mean she wasn’t going to get her dresses dirty rolling around on the floor. Eden was a crawler she walked early but wasn’t fussed how she got somewhere as long as she got there and Livvy well she was a late walker but could crawl faster than the speed of light ( slight exaggeration there but you get the picture.) and of course my baby girl Brodie, her want for

50 pairs of shoes had her up and running early too . I guess what I’m trying to say is we all go at our own pace and we have to allow ourselves time to make those baby steps.

Oh don’t I sound so calm and wise yet the reason I’m writing this is because I was so angry at myself today and felt like I have failed but now on reflection I don’t think I did.

You see I tried to return to church today, we haven’t been in the building since before the pandemic and I knew my anxiety would be high returning but that was when in my plans Daniel was with us. Walking in there today without my beautiful boy was agony. Daniel loved church, he especially loved the worship he would just shout out not always to the tune of the song but who carers he was telling the world how much he loves God. I remember his cheeky way he tried to take over the service when our leader was talking, how the more I tried to quieten him the louder he got. I miss the way he would pull into me when we prayed, when we loved on those that needed prayer and those that didn’t realise that they did. At home Daniel would sit in my lap and when we prayed he would pull me closer to him. Listening intensely to make sure he heard the words, the need.

So yes today was hard but I had been determined to go to church and I mean if you are going to fall apart it’s best to do it with family. I did okay I appreciated my hugs and wishes I was calm and ok well until the worship started. As James’s voice lifted up my heart shattered into pieces. Where was my boy, why wasn’t he here, his voice not there for me to here broke me. I tried and I really did try but be it the words of the song or the emptiness of my arms I had to leave. You know the moment when your crying becomes beyond control your sobs become loud and shallow yes that was the one. So I left, I just had too. Our church leader came and chatted with me and Alan and I calmed myself down but I was so cross at myself , I was cross I couldn’t find comfort in a place that brought Daniel lots of joy. But I just could not.

But you know what, baby steps.

After we left the church we decided to go to the food festival in Lichfield, our plan had been to go yesterday but my grief had other plans. Instead I sobbed until I gave myself a migraine, wasn’t the best of a plan really was it, oh well. Anyway off we went, it was super stressful even parking made me want to turn round and just go home. It wasn’t helped by my husband’s aggravation at the lack of parking spaces and definitely those who do not use indicators. I honestly thought he was going to combust. It’s strange how anxiety can make you feel, Alan gets cross at people, I start apologising for breathing.

Anyway we parked and we walked around the food stalls. I’m not going to say I enjoyed it,the vast amount of people was beyond overwhelming and after shielding for over two years having that many people around me was too much. But it was the missing that got me, now don’t get me wrong there is no chance Daniel would open his eyes at that festival it would have definitely been sensory overload but his missing presence was felt in so many ways. Firstly we just got out the car and left, no checking of bags unclipping of wheelchairs, making sure we have blankets and so on. Secondly we realised today that we used Daniels wheelchair as a ram, pushing through the crowds with the wheels getting knocked not us. It was just so strange even the knowledge that the only reason we could actually be there was because Daniel was gone. Crap that hurts.

So I managed as long as I could, Alan enjoyed a burger which he described as “the best ever”. I got overwhelmed by the choice and came home for my cornflakes.

But guess what I went and tried and last week I couldn’t have done that so as they say , Baby steps.

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”