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.
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.
My phone vibrates, it’s a reminder to tell me it’s the Derbyshire county show today. I remember vividly adding the date to my calendar. Telling Daniel about how much fun we were going to have. The animals we would see. Describing how loud and full of so many different sounds, how I hoped the highland cow class in the show ring was going to be on again. Daniel sat eyes wide open listening to me, cuddling in closer as I went on telling him about the horses the tractors. He wasn’t happy that his favourite vet and wife wasn’t going to be there but we were going to have a wonderful day, I’m sure of it.
How I wish I was back there in that state of ignorance. Not knowing how less than a month or so later my world would be in pieces, shattered completely by my broken heart.
How I wish that I could have got up this morning and got Daniel ready for our day of animal heaven, not a day of grieving him in heaven.
How I wish
How I wish.
I hope Daniel visited the show today, that he and Livvy watched the show rings and guessed at the winning animal. I hope they danced to the music playing, flew high on the fairground rides, enjoyed ice-cream and candy floss. Do you get ice cream in heaven? I hope so.
I on the other hand have spend the day in tears, valid of course but overwhelming and so so painful. I truly feel like my future is over, I just have no idea what to do or who to be. I did wonder about going today but decided I couldn’t. The pain would have been too much and actually finances wouldn’t allow it. I do really need to find a job.
No one warns you about the loss of identity that comes with grief, with the loss of your loved one you lose the role you were to them. If you lose a parent you stop being their child, if you lose a child you stop being their parent. I don’t mean in name but in what your day consists off. Losing Daniel I stopped being his mom , carer, nurse, advocate my favourite role, the cuddler all gone with my beautiful boy. Of course I’m still Daniels mom but right now he doesn’t need me and oh my I loved being needed by my boy.
Along with the county show today I have many more moments, appointments that I don’t have to attend any more. My days are empty and I’m finding this hard to navigate. What the heck do I do with myself, 24 hours are now endless and empty.
As I’ve said I’m job hunting but even that has me at a lost. I haven’t spend the last years planning, working on my future career. I had my plans perfectly set before me. I would live to love on Daniel, to spend my time caring for him. Using my time to advocate for Daniel and any one with disabilities who are facing so much discrimination right now.
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.
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.
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 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.
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 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.
Often when we face a loss in our community of special needs parenting, our hearts break alongside those facing the pain. We emphasise with the anger and missing we feel the disbelief and sadness. Myself personally I ache for the pain I know those left behind will feel. Each new loss reopening a wound that is far from healed.
Yet one of the things I still do not understand about loss in the disability community is that from those outside of it, is the feeling that somehow it’s acceptable. That in some way it is less. The concept that a life lived with a disability is not as full as one without.
There is no denying that being part of the special needs community we face loss maybe more than most, the wider our community the wider amount of pain. But that’s our life, we choose to walk alongside one another through the good and the bad. We celebrate the achievements and too often we have to grieve the loss.
Yet often those outside the community do not understand our journey and more often than I would like, do not understand our joy.
Statements like “oh well she had been poorly for a while” “sometimes it’s for the best” or my favourite (irony) “God knows best”.
When Livvy died she had a devastating neurological condition. Her body faced so many obstacles, seizures, abnormal breathing, sometimes uncontrollable movements. Yes, to list her conditions it may seem dire. Yet what the reality was that yes she had this list of issues but what she also had was a life filled with love and laughter. She had a family that adored her, she had parents she wrapped around her fingers. Sisters she teased and played with. Teachers she adored, friends she loved. Her life was full of joy and mischief. She was not her list of conditions. Yet still when I speak of my missing, people speak of her with pity. When I speak of her loss, people speak with acceptance, as if her disability makes her death more ok.
Whilst I know this attitude is meant with kindness I need to share that it’s not. When someone who has a disability dies it’s not ok, it’s not even a little ok. It’s a heartbreaking, soul destroying grief.
You see people are not their disabilities they are simply people. A child with disabilities is simply a child.
So I beg of people, I ask desperately that when dealing with a grieving mother, a broken father a missing family, that before you speak of freedom from pain, limited lives or God’s choices, STOP. Whilst the lives lost may have seemed hard to you, or the disabilities overwhelming those grieving see the little boy whose eyes twinkled as he looked at them. The little girl whose smile lit up the room, their son, daughter, sister, brother. We don’t grieve the disability, we grieve the one we loved and their disability wasn’t what defined them. Our pain is not less and their death is not and never will be acceptable.
Rebel with kindness 