Tag: childloss

Doing

On By rebelwithkindnessIn griefLeave a comment

How am I doing?

A valid question I guess but I don’t have a answer unless it’s ok to just say “doing”. I wake up each morning to a life I don’t want, a life that’s missing so much that it hurts from the first moment my eyes open. I’m trying to be better, trying to behave like life is still worth it, but right now it’s not. I hate that I feel this way, hate that I cannot find the old me who could find joy in anything. No that’s a lie, the old me pretended to find joy.

Faking is my superpower I guess.

I miss my beautiful boy, how hollow are these words, they just feel empty because the depth of my emotions cannot fit into the space of these letters.” Missing Daniel “ doesn’t really comprehend the devastation and the brokenness.

I’m living a life I had never planned for, it’s not a bad life, I like my job and I do wish to progress and grow but it’s hard to enjoy when the reason you are there wasn’t your choice. The reason you aren’t in your happy place loving on your boy wasn’t your choice. You,me, my life. How easy is it for me to feel like a spectator in my own existence. On the outside looking in, not consciously attaching myself to the weirdness of a world that shouldn’t exist, a world without my beautiful boy.

It’s normally about here where I try to reach for the reason, reach for something, or to somehow make it right but there isn’t any right. There isn’t any silver lining, if there are lessons for me to learn well the teacher can go do one, losing one child gave me the opportunity to painfully learn and grow, two has fucking destroyed me.

I don’t feel like there is a way back anymore, the Sara I was has gone, broken pieces are just left behind. Will those pieces come together to reform, knit together to create someone new, I have no idea. Right now they, no i am just broken.

Broken

In the brokenness

On By rebelwithkindnessIn Dear Daniel, grief, UncategorisedLeave a comment

I’ve never been one to follow the calendar. I often don’t know what day of the week it is let alone the date, this has especially been the case in the last two years due to shielding. I mean who cares what the date is, we aren’t going anywhere. Yet since Daniels death I have found myself coming slightly obsessed.

When April turned to May my heart was aching, a new month that Daniel won’t be part of and today we begin another month that won’t hold him in it, it’s so very hard and feels so wrong.

How do I do this life without my beautiful boy? I really feel the need for direction. Nothing makes sense , the things I loved are now too different without my son. Alan suggested I join him in keeping the house tidy but even thinking about it makes me tired. I mean we are just cleaning up our own things when I’m so used to changing beds because Daniel had peed on the sheets, often literally after I had just changed his pad. That boy loved a clean nappy. I should be cleaning up milk when I forgotten to clamp the tube. Weighing pads, chasing prescriptions and so much more. What i am not doing makes what I should be doing feel so out of reach.

I know it’s going to take time and it should, shouldn’t it. You don’t move on from losing your heart in a day, week, lifetime. I’m just so lost it’s crazy, I think that may be my forever statement. “I’m lost.” Then I think of one of Daniels favourite hymns “ i was lost but now I am found” maybe I will be found or find myself again.

Who knows?

Alan and I are struggling so scared about the future. It’s hard trying to make a life you so didn’t want. Everything is different, everything is hard, everything is missing Daniel. People keep telling us of the holidays we can now take, the places we can now visit, the freedom we now have. I know they mean well but this so called freedom came a high cost. Plus I never felt so free when I got to love on Daniel.

I remember so vividly when we lost our beautiful Livvy my anger, I was so angry that the world continued to turn without her in it. I feel that same anger with Daniel but with an extra element of bitterness, we lost him to what we tried so hard to protect him from. His life was stole by a virus the world wants to forget. He is just one in million statistics that we just have to accept. It’s shocking, it’s cruel and it’s so very wrong.

I’m never going to be the same person again and I don’t think Alan will either. Sometimes the spotlight is too powerful to not see the truth. I don’t want to stay bitter but the brokenness of my heart allows it to creep in.

My wonderful friend reminded me at Daniels celebration of the Japanese art of embracing brokenness, Kintsugi. Kintsugi teaches you that your broken places make you stronger and better than ever before. When you think you are broken, you can pick up the pieces, put them back together, and learn to embrace the cracks. Kintsugi teaches you that your broken places make you stronger and better than ever before. She reminded me that I had once before filled my brokenness with gold and that I will do again.

I’m beginning to think I may end up with a bowl full more of gold than china but that’s ok every crack, every bit of brokenness was made because I was blessed enough to have loved and to be loved.

To be so very loved.

Dear Daniel

On By rebelwithkindnessIn Dear Daniel, grief, Uncategorized1 Comment

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

It’s just a van

On By rebelwithkindnessIn grief, UncategorizedLeave a comment

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

Desperate

On By rebelwithkindnessIn Five minute Friday15 Comments

I woke last night screaming, somehow my sleep had become a time machine and I was there again in the hospital begging my child to wake. Desperate to see her chest rise again, begging the Lord to save her.

How can 12 years just disappear in a moment?

Yet I know in grief, time is only my enemy.

I miss my girlie so much, how I wish I could just hold her in my arms once more, to just breathe in the sweet smell of her hair.

Grief is a complex devil, playing games with your heart moment by moment, memory by memory.

Does it ever end?

Only with eternity I guess.

Oh I never knew the heart could survive such pain. The crushing weight becoming bearable against my wishes.

I don’t want to sleep again, I had to leave her once I’m not sure I could do it again.

Why does your memory invade your dreams?

Is there nowhere free from grief?

I couldn’t pretend for a while, I could not create the facade of being ok in those darkness hours. So I let the tears fall and as my whole soul hiccuped through my body I allowed myself to miss her.

I let the memories swarm my mind like a tapestry of bees as they create their honey, I created my moments again. I held her in my arms, I heard her sweet giggle of mischief on the symphony of the night and I breathed her in deep and I sobbed.

I still don’t understand why I had to lose her, why Rett Syndrome had to win the battle for her life. Yet I know it wasn’t for the lack of love. My Livvy, their Livvy, your Livvy was loved with the depths of so many hearts.

If love could have saved her life she would be here.

No the question still stands unanswered, our hearts still forever broken.

I couldn’t breathe anymore the tears had tore my soul and I did fall into an exhausted sleep.

I wake still desperate to hold my daughter once again.

The new day begins,

I trust, I breathe and I hope.

Until we meet again my beautiful girl, until.

Joining in again with five minute Friday, set your timer for five minutes and write.

It did not end then.

On By rebelwithkindnessIn UncategorizedLeave a comment

November 7th 2008, should this of been the day Livvy’s story came to an end, the day she left this world for what I believe is a better place.? Should this have been the last ripple she caused on this world? Regardless of what should have been or what could of been, her story did not end there, only here did the next chapter of her story begin. Her promise, her teachings and most of all her hope, the unique new paragraphs of her legacy

If I’m going to be completely transparent as I write here, I have to confess I didn’t see the next page straight away, I stumbled back and forth through the last pages day after day. I questioned the ending, stumbling over the reasons, failing to find the acceptance in what had become. I wasn’t ready for my hero to die, not ready to give up on our numerous adventures and devastated not to have one more of her incredible hugs. I couldn’t see beyond her end. I couldn’t feel beyond the pain of her loss, and grief well it had become my best friend never leaving my side moment by moment, breathe by breathe. 

Right then at that time the only legacy I could see was pain, was loss.

I will not tell you time eased anything because being honest time was an evil that I hated, every day that passed was one more without her. It didn’t ease, time twisted the knife in deeper making her seem farther and farther away. 

Time became my enemy and the past something I prayed for. 

Yet through time I learned that no matter how much your heart breaks the body continues on. 

No matter how you cry out for the world to stop turning, it still spins. 

I will not tell you the next step of my transition came straight away or that I picked up any particular signs but overtime the more I shared my heart about Livvy the more I remembered her fighting spirit. I remembered all the moments Dr’s had given up on her and how she had fought on.

My heart began to feel with her courage, her spirit began to feed through my veins. 

I had to make a decision, a decsion to live,

Determinded to live loving harder. 

I knew In my heart that Livvy had lived loved, she had known a life full of love, security and a lot of laughter. Yet many, many do not know this and this was something I could do, something I wanted to do for others. 

The next chapter was a new beginning, new begining’s for others. Livvy, she may have not been physically here, but my heart held her in every decision I made and in every heart I wanted to heal.

Her legacy is and always will be love.

My children are my reasons. 

When Daniel came into my life she couldn’t have made it more obvious unless she had gift wrapped him with a bow labelled, “send in love from Livvy”. He was ours to love and love hard, he was our gift of joy, heaven send.

Daniel like Livvy is a great reminder of the truth, that life is not measured by days, weeks or years but by the hearts that you make feel whole. Riches are not found in money or fancy things but in the smiles you create. 

Livvy’s story is still unfinished, her legacy is living and loving, right here and right now.

The pages are still being written, chapters yet to be wrote, page by page, memory by memory.

She should have been 19.

On By rebelwithkindnessIn Uncategorized1 Comment

I’m not sure how to explain today, how to find the words.

It seems wrong to say that my daughter is 19 today, when in reality she will be forever 9.

I want to celebrate what should be her special day.

I want to eat cake and sing happy birthday, but my heart is just so broken.

How can you celebrate when you cannot hug the birthday girl tight?

How can you smile when forever seems so far away?

Gosh I miss my beautiful girl, that feels like such an understatement. Every breathe I take aches for her, my arms crave to hold her again, my heart beats with a missing piece.

I torture myself wondering what she would be like now, I wonder would she still love her football players, her gothic clothes and Tinkerbell. Yet how can I really know, she has been gone nearly ten years, her sisters have changed so much, so would she?

I have no idea; do you know how hard that is to comprehend? No idea at all. I should know my daughter, I should have been given the chance to.

My heart feels on a roller coaster right now, my faith doesn’t feel like the liberation it should be. Yes, I believe I will see my daughter again but forever is still out of my reach.

Is it wrong of me to wish her back here, back into a body that struggled so much, a body that betrayed her in so many ways?

Is it selfish of me to just want one more day?

Nineteen, it would have been the last of her teenage years, yet the truth is she never got to the beginning.

Nine and a half years, a minute moment in time, not enough, never enough.

I know Livvy would be cross at me today, I know she would be giving me her evil eye and her stern look.

“Mom you know better. You know not to waste a moment, celebrate me and do it with joy. Remind my sisters how much I love them, tease my new brother who you should know I got to meet first. He may have got lost on his way, but I got him to you eventually.

Get out there Mom and enjoy the sunshine, sing at the top of your lungs and hug my Dad tight.

No sadness, no sorrow, no more”

I can actually see her in my mind conveying all this, her eyes alight with mischief.

I can actually feel her soft hand, her long fingers entwined in mine.

I can feel her, but my goodness I miss her.

I can try my darling girl,

I promise I will try,

My heart wants to fall into a million pieces,

My soul just cries out in missing.

I don’t know what or how I will be today, maybe there will be moments of joy wrapped in the ribbon of sorrow.

I can try but I’m sorry Livvy I cannot promise, I just miss you too much.

Happy heavenly 19th Olivia,

Happy birthday Livvy xxxxx

How could I have forgotten? 

On By rebelwithkindnessIn Uncategorised, Uncategorized3 Comments

Yesterday the world just didn’t make sense. My heart and my head just couldn’t stay on the same page. I screamed, I cried. I was angry, I was sad and for a while I didn’t know why. 

Why was this day so hard? 

Then I caught the date on my phone December 3rd, 

December 3rd 

As I read that number it hid home with a gigantic bang.

How could I have not realised, how could I have not remembered? 

What kind of mother am I ?

Forgetting the day I buried my daughter. 

If I close my eyes I can recall that December day. It was cold but yet the sun lite up the winter sky, warm rays dancing on the icy floor. 

Frost sparkling like a carpet of diamonds fit for a princess, my princess. 

You know It’s not in any parenting books, or  on any websites. There are no handbooks on how to bury your child.

You wander through it all in daze, making decisions you have no desire to make. The colour of the casket, the silk that lines it. What does she wear? Oh the irony of it all, does it actually really matter? 

Yet matter it did, from the brand new cardigan that Nanna travelled to fetch to the choosing of her special toys, it all mattered, it mattered desperately.

I wanted it perfect, I needed it to be perfect.

It was all I could do, all I had left to do. 

I don’t really remember the words that was spoken or even the memories we shared.

All I really remember is the weight, the weight that consumed me, my feet feeling lead lined not wanting to move. To leave, to leave my beautiful girl behind. 

I kept on at myself “she isn’t there” “she has already gone”. Yet in that casket laid my last physical connection with my daughter and everyone is telling me I have to move, I have to leave. 

I held on tight to my youngest hands as I left that chapel, scared to let her or her sisters out of my sight. Wanting to hold on tight to them and never ever let go. 

I was empty, I was lost. 

Walking through the pleasantries, shared moments, warm hugs. 

Yet nothing was ever going to be the same again. 

I would never be whole again. 

I left part of my heart behind in December 3rd 2008 and whilst the brokenness has started to heal I will also have a missing piece. 

A beautiful blond wild haired missing piece. 

My girl, my Livvy,

Forever in my heart, forever my daughter. 

Eight years 

On By rebelwithkindnessIn Uncategorised, Uncategorized3 Comments

I wasn’t sure I was going to write this year, I was thinking, wondering if I should let the day go past without remembrance. Yet I knew it would be a lie, a falsehood because pretending that this anniversary doesn’t exist doesn’t make it so. In fact the pretence builds its power giving it more control.

Eight years, eight long years of missing my beautiful daughter. 

Eight years since I held her last in my arms.

Eight years since I heard her sweet giggle.


Grief, it’s a horrific road, it often plays unfair. Sometimes it even allows you to feel like you are winning, only to sweep your feet from underneath you, cold and swift. 

Yet the truth is that grief and love, they walk hand in hand. Without one you would not get the other.

So I’ve decided today that I’m not going to hide away.

I’m going to immerse myself in all that was Olivia, 

That is Olivia.


I’m going to give myself permission to walk through the valley of pain in hope to find a place of peace.

I’m going to remember her sweet little ways, her cheeky character, her strength of spirit.

And I’m going to give thanks 

Thanks that even now in the midst of grief, I am so thankful that I got love.

I am one incredibly blessed woman that I was lucky enough to have this child call me mom. 


That I would walk a lifetime in pain for the privilege of being Olivia mom. 

That whilst nine years will never be enough they were such a gift. 

My beautiful girl I wonder if you really knew how you changed my life. How you opened my eyes into a world of innocence and honesty. How living one day with you would often seem like a lifetime. You taught me so much, you challenged me, to embrace each moment, to celebrate each breathe. 

Many can travel this life without really knowing their destination, their purpose. You young lady gave me mine, you made it crystal clear what was expected from me, I’m still hearing your instructions from heaven. 

Be kind for kindness sake
Be thankful for all things 
Stand up for what matters 
Be the voice of the voiceless 
And never ever be afraid to say yes to love. 

We are not all promised forever but knowing you are loved is a lifetime gift. 
Thank you for being one of my greatest gifts.

My beautiful daughter
My inspiring Livvy.

Until I get to hold you again, love you girlie xxx

Happy 17th Livvy xxx

On By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

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Today my daughter celebrates her 17th birthday, a birthday of pending adulthood the beginning of life on the road. Yet there will be no licence applied for or birthday hugs for me. Because my daughter is celebrating in heaven.

My heart is heavy today, the weight of missing drags upon it. 

I’m reminded of what is missed and what never got to be.

I’m trying so hard to focus on what we did and the memories we made, but 9 years will simply never be enough. 

I wonder what celebrations are like in heaven, do they have birthdays or is time and years past an earthly constraint? 

I wonder if someone has made her a cake, chocolate of course and are they singing her happy birthday again and again just to see the smile that lights up her face. Lights up your heart.

I wonder a lot, what does she look like, would her hair still curl around my finger? Does her blue eyes still sparkle with mischief? 

Sometimes I cannot breathe for missing my beautiful girl. My arms ache just to hold her again.

I often get lost in the anger, just so angry that I was robbed of my amazing girl. Bitter at the emptiness. 

But then I remember her, I remember my Livvy and her desire to live life to the max. Sometimes I wonder if she knew that she didn’t have forever because she packed so much in her days.

She loved people wholeheartedly, from her teachers to her sisters to us her parents. She has this way of making you feel like you were the only one in the room, as if you were so special to her. She made sure you knew she loved you. She didn’t need words her eyes were the windows to her soul, she looked deep inside of you, filling you with love. 

I am so grateful I got to be Livvy’s mom, I wouldn’t trade a moment, a minute. Even today in the minute of this extreme pain i know I would do it all again in a heartbeat. 

Yet today I’m allowing myself to be sad, allowing the waves of grief to wash over me. Allowing the missing to be.

But tomorrow I will move on, I will do what she wants me to do. Continuing her legacy of love. I will love on her sisters and the brothers she has sent to us to love. I will plan the Livvy’s smile events, our forthcoming tea party and those yet to be planned. I will continue on, being brave just as she was. Hoping and praying I’m making her proud.

Happy birthday my beautiful girl, how I wish you were here to celebrate with me. How I wish we could eat chocolate cake until we were both sick. How I wish, how I wish….

  
Happy 17th Livvy, may heaven be singing for you today. I love you my precious girl xxxxx