Hello 2023

On January 1, 2023 By rebelwithkindnessIn UncategorizedLeave a comment

Hello 2023 I’m not not going to even try and say “Happy new year” because the words get stuck in my throat, I choke on the sentiment of new beginnings, a better time blah blah blah. The date has changed on the calendar and like everyday since April 27th I start it with the pain of missing my boy.

When I lost Livvy in 2008 the turning of the new year destroyed my soul, I truly felt like I was leaving her behind and couldn’t comprehend a year that didn’t have her a part of, memories made that didn’t hold her within. So I guess the irony of losing two children is I now know I’m not leaving Daniel behind in 2022 I’m bringing him with me. Just like Livvy I may have left his physical in 2022 but his spirit, his love, my Daniel will be in everything I do in 2023. Alongside his big sister they get to be my heavenly cheerleaders and my biggest inspiration.

Now don’t get me wrong I am not tying the loss of my beautiful boy in an imaginary bow of “all is good,” far from it. 2022 you have been a hell of a year and losing Daniel well there are no words it’s just wrong and so fucked. He deserved so much more and whilst I will never understand why I had to lose him I will never not be grateful that I got to be his Mama, I am his Mama.

So what’s the plan for 2023, right now I’m just sticking with just survival. I know I have to work on being healthy, not the lose weight, get active healthy (though this wouldn’t hurt) but feeding my body decent fuel, hoping to stop tumbling from one illness to another and just working on caring for myself a little more, “walk the talk” is what a friend reminded me gently this week.

I also need to work on my mental health, getting a later in life ADHD diagnosis came rather as shock to me but it had as allowed me to understand my brain more than ever and this is allowing myself to be more honest with my feelings. I want to continue learning more about myself and my likes and dislikes and to stop trying to play the roles I think others want me to play and find my authenticity. Not going to be easy especially with CPSTD but working with some amazing people has really allowed me to start understanding it’s ok to like what I like and who I am. Like I said it’s a journey and I am definitely still at the beginning.

I start 2023 in a new career, it’s a field I have wanted to work in for, well forever. I didn’t want to have to lose my gorgeous boy to find myself here but maybe he sent me the job from heaven who knows. I’m hoping that I can find my purpose again and make a difference still in the lives of others. I truly believe we aren’t put on this earth for our own gratification but that true joy comes from service and enriching the lives of others. So I’m striving for growth, development and hopefully success in changing lives.

I want to see the world a little more, live in the moment a little more and breathe deeper a whole lot more. For as long as I can remember I’ve lived only shallow breathing scared so much of what could go wrong that I forget to see what could go right. The irony of writing this after losing my beautiful boy isn’t lost on me. But I guess when you are already so broken the only way forward is healing. I don’t believe I could fall any further into the darkness right now so the only way forward is towards the light.

I have no idea if any of this will materialise, I’ve learned that life will be whatever it’s meant to be. All I can promise is I’m going to try to live to honour all my children my earthly and heavenly blessings. To live each day knowing I’ve made them proud and myself too.

Hello 2023, I’m not ready for you but I also know you are coming regardless, so here we go.

As for 2022 “fuck you”.

Maybe you should wait?

On July 31, 2022 By rebelwithkindnessIn Uncategorized1 Comment

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.

In the brokenness

On June 1, 2022June 1, 2022 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.

My beautiful boy.

On May 28, 2022May 28, 2022 By rebelwithkindnessIn Dear Daniel, grief, Uncategorized2 Comments

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.

“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

On May 27, 2022May 27, 2022 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

Care

On September 24, 2021 By rebelwithkindnessIn Uncategorized6 Comments

It’s 3am, I’m exhausted but my son just cannot settle. The awful panic attack he had earlier today at school is fresh in my mind and on my heart. The constant swallowing he is doing makes me realise we are not fully over it. The professionals are calling it separation anxiety, I just call it heartbreaking.

I hate that his history has such an impact of his future. How lack of care can leave such fear?

I’ve read the adoption books, studied to degree level the trauma publications, but none cover him. The complex medical missing in the pages of attachment and trauma. I guess children with complex needs don’t suffer with emotional issues, cue a eye roll of frustration here.

It’s strange but sometimes I feel guilt for not being there at his birth, absurd I know but how my mama’s heart wished he had never to feel unsafe, alone, abandoned. I do wonder if other adopted parents feel this way? I know it’s not rational but love and rationality don’t always go hand in hand.

Oh my heart, how I love my boy, my exhaustion right now pales in my love for this sweet sweet boy. Oh how I wish my love could stop the pain, would take away all fear.

My arms ache, he isn’t a baby anymore, his weight is heavy on my shoulders. His fear is heavy on my heart.

I can hear his breathing now, he is falling deeper into sleep. I need to follow him tomorrow is a busy day.

I’ve spent sometime tonight praying over him, my prayers seem to bring him peace. I ask God to heal his fragile heart, to take away his fear but mostly I give thanks that he found me. Thanking God for the honour of caring for him and the gift of loving him.

Joining in again with five minute Friday.

I wish I had been there.

On April 4, 2019 By rebelwithkindnessIn Uncategorised2 Comments

I read a post the other day describing the days of a premature baby in a neonatal unit and my heart broke. Not because Daniel was born at 26 weeks because my little fighter survived, but because I wasn’t by his side through it all.

How crazy is this that I’m torn inside by a grief, a guilt for a time I didn’t know. For a time when I didn’t know my boy. The idea of him facing what he did without me by his side breaks my heart.

The whole time before he came my son is one I cannot focus on. I cannot bare to think of the symphony of emotions he had to face alone.

I have read his medical file and my heart just tears, 26 operations before we met him. 26 anaesthetics, 26 procedures, 26 times I wasn’t by his side holding his hand.

I know it’s crazy and deep down I know it’s not my fault and I do just have to have trust in the journey but I honesty wish he hadn’t had to face one step without me.

I get frustrated when people tell me that he shouldn’t be as clingy as he is. I honestly ask them to walk his pathway and see if you didn’t want to hold on tight.

When the world has been full of procedures and strangers. Pain and suffering. When you cannot see who is picking you up tell me you wouldn’t hold on tight to the one you know, the ones whose arms to trust.

I’m so proud of this clingy I want my mom stage, because this means he knows I am always there. That in my arms he is safe.

I adore the way that when he is ill he only wants me it’s further testimony to our bond.

Mother and son.

I cannot change the past and that’s something I do have to let go. I’m just so thankful that he came to us and that his heart fitted perfectly inside mine.

The future isn’t mine to see and I will not make promises that I cannot guarantee but what I do know is that why my heart still beats I will be by his side, whenever he needs me that’s a promise.

Living to love

On February 10, 2019 By rebelwithkindnessIn Uncategorized1 Comment

I wanted to write about this last week, explain what had happened with Daniel but for the first time in a long time I just cannot. I cannot find the words to describe the fear, the words needed to give light to the darkness.

Let’s just say I was scared, frightened to the point where I couldn’t breathe.

I’m so thankful for the outcome, thankful I got to bring my boy home but I think it’s going to take time to actually process this last week.

Everyone tells me how strong I am, how much I face yet they don’t seem to understand when I say I have no choice. You see loving someone doesn’t come with guarantees. No one promises you a life full of unicorns and balloons. You take a step in faith, in love.

When we adopted Daniel I knew I was opening myself up to fear. Embracing the unknown yet with the knowledge that he was extremely complex, that he was vulnerable.

Some people ask me why, yet why not? Just because I didn’t birth Daniel doesn’t make our bond any less strong. I do wonder if someone asks my friends who did birth they children “why they do it”. With Livvy everyone used to ask “how do you?” Not “why do you?”

He is my child, my son.

Love is a choice, loving my son is the best choice I’ve ever made.

So yes my heart is healing and fear is holding time but love, love is the greatest bond, the greatest emotion and the very best reason to be living.

Living to love.

Capture those moments

On March 16, 2018 By rebelwithkindnessIn UncategorizedLeave a comment

My friend today shared a photo of Livvy and I today on her Facebook, its so lovely to see but it does really hit home of one of the greatest mistakes I made in Livvy’s life.

Not being in photographs with her.

You see I think I have three or maybe four photos of Livvy and I. My fear of being photographed actually has robbed me of precious memories of my darling girl.

How often do you find yourself saying “ I will take the photo” “Oh not with me, I’ve not done my hair, makeup.” I have an endless list of escape sentences that I now regret so much.

You see my daughters didn’t care how I looked they just wanted memories that I was visible in. I wouldn’t have cared how I looked to have images of me holding my precious girl, moments I could close my eyes and recapture in my mind.

Yet I cannot go back no matter how often I wish I could, but I can make changes and slowly I have been, pushing myself in front of the camera instead of behind.

Adopting Daniel and the level of his complexity has hit home again the fact that we are not promised forever and so I have made sure we all have precious memories to hold on too. So this is why for Mother’s Day this year I treated myself to a Mother and child photoshoot and its been one of the most amazing things I have done and honestly I will cherish the images forever.

Choosing a photographer you trust is paramount especially if you are like me and are petrified of having your photo took. I went with Baby tree photography .

Liza is so amazing, we came across her when she photographed a friends christening and she is so lovely, she captured Daniel’s dedication in September and the characters of the guests were just so visible in her images and Daniel well is just completely gorgeous anyway.

I attended her studio a little nervous but within minutes I was relaxed and actually excited. I did wonder how Daniel would react to the day as he gets sensory overload and often just switches off in new environment but he was a complete star and honestly I think the images speak for themselves. I cannot thank Liza enough I look at the photos and my heart just beats with joy. The moment she captured will be a moment I get to forever cherish “A Mama and her son.”.