This is not his story.

Daniel has been adopted now for over a year and because of this it was time for the social workers to step out of our lives and allow us to move forward as a normal family. Part of the adoption support was the creation of a life-story book for Daniel and what they call a later in life letter, a synopsis of what had happened and how he became to be adopted. These letters are the child’s right to know their history to be given to them when they are at an age of understanding.

Daniel’s letter broke my heart, I thought I knew most of Daniel’s journey, but I hadn’t a clue. I knew he had faced numerous medical procedures but 26 operations before his 2ndbirthday, well that simply sucks. The number of foster placements he had and the amount of time he spent in hospital all more than one child should ever have had to face. The pain and the fear he must have felt is something I have really struggled with over the last week or so.

Livvy faced a lot in her life, regression, seizures, breathing issues and more but throughout all this she knew we were there for her, knew how much she was loved. Livvy understood that we were walking alongside her and that she didn’t have to face anything alone. It’s this I am struggling with for Daniel, how alone did he feel?

My faith is my strength but for the last two weeks I have been so angry at God and at the world.

It’s a strange situation I have found myself to be in, everything has really got to me and I have found myself raging over the stupidest of things. I was angry at Alan for being seemingly ok over this new found knowledge, angry at family members for not grasping how hard this is, not wanting to acknowledge what he had faced and even angry at complete strangers who would moan of the simplest of things, wanting to scream “What the heck, try living his life for a moment”.

Being angry at God is something I struggle with, it just feels wrong, yet I was so, so very furious at him.

If we were to be part of Daniel’s future, why the heck couldn’t he have gotten him to us earlier?

Why so many operations?

Why so much pain?

Why so much fear?

 

Yesterday I was sitting in church listening to the worship when the words being sung finally started to sink into my soul and I realised that ;

Daniel was never abandoned by God,

God never left him.

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Right there in those numerous operating rooms God was with him, as he fought against the brain bleeds and the meningitis God was with him, and when professionals were making decisions for his future, God was with them.

Daniel was never alone.

Daniel was never on his own.

When we received the call asking us to have a fostering placement for a weekend God was with us. He was in the Yes that I found myself saying, he was the one that placed adoption on my heart so many years ago ready for Daniel.

I still don’t understand why Daniel has had to face so much, just like I will never understand why I had to lose Livvy, but I do know without a shadow of a doubt that God is with us always.

As the words of the worship began to soothe my heart I realised I was free from the anger that was consuming me. Free from the what if’s and free from the past I couldn’t change.

I was overwhelmed by how much God loves Daniel and me. How blessed I am that however hard Daniel’s journey has been we are so very blessed to have found each other.

I don’t have all the answers but that’s ok, I have faith and God’s promise.

I actually shared this at church yesterday, something which scared me like crazy, but I am so glad I did, because Daniel’s story and my story of fear and anger actually spoke to a number of people and they shared their journeys with me. Their sharing allowed me to realise that whilst I don’t believe things have to happen for a reason, beauty can be found in ashes. How many of us have felt completely alone and so far from God? It’s hard in the midst of pain to remember the promise that we are never alone.  

Daniels past is not all of his story.

Every day is a new page yet to be written and I am so lucky I get to be part of his story.

I get to see all that God has planned for Daniel, the hearts he will fill, the spirits he will move and the smiles he will bring.

My boy will change the world.

I’m so thankful I get to be his Mom and I’m so excited for his next chapter.

Let’s get writing

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Handsome boy

A while back we visited a local artisan market and it was here I came across the beautiful Jessica from My little thistle and a small selection of her adorable clothes. I was impressed straight away by the design, the fabric and the quality of sewing.

After chatting with Jessica she told me to get in Touch if wanted something made for Daniel, she was happy to adapt her designs to make it work for Daniel and his needs. This actually meant more than she realised.

So with a family Christening looming it seemed a perfect excuse to treat Daniel to one of her beautiful outfits.

Daniels outfit was made to measure and I’m in love.

It was everything and more than I expected.

I’m just going to let the photos speak for themselves.

How adorable does Daniel look?

More more I hear you call, well if you say so.

Honestly go check out My little thistle you won’t be disappointed.

*Ps I brought this outfit and just wanted to share because I love it so much xx

Happy 70th NHS

I guess you could say I have known the NHS my whole life, from the moment of my birth I have been supported by this system.

Far from perfect the NHS is as far as I’m concerned one, if not the greatest systems in the world. Free at the point of need it has saved countless lives and given so many more people hope and time.

To be truthful like so many I took our NHS system for granted until I really needed it.

From the moment my body went into early labour with my daughter I just assumed the NHS was something that was just there. Yet when scared for my unborn child’s life I realised it is so much more.

Thanks to the NHS my baby stayed put and was delivered at a safe and healthy time. Thanks to the NHS her sister joined her a year later. Thanks to the NHS Olivia entered the world in dramatic but safe manner and was followed later by my youngest Brodie.

The NHS gave me time with Olivia, yes we didn’t have a smooth diagnosis and there were times we were let down but for the most part the NHS gave Livvy life. You only have to look to countries without free healthcare to know how lucky I was that she was born here in the UK.

From epilepsy treatments to resuscitation the NHS saved my daughters life over and over again.

The NHS also saved my son, I found out only a week or so ago that before Daniel came to us he had faced 26 operations, so many moments and nights where he wasn’t supposed to pull through, thanks to the tireless work of the staff of the NHS my monkey is still here causing mischief on a daily basis.

I cannot convey into words how grateful I am of the NHS, how frightened I am to live in a country without it.

The NHS is far from perfect but if you are ill in this country it is there for you. It doesn’t matter if you can afford it you will be cared for. It offers treatment of the person not the bank balance.

Yet I would be blind to see that it’s not struggling, as a victim of its own success people are living longer, diseases that would have killed are now being cured.

Yet government funding is not celebrating these achievements but punishing with reduced budgets, privatisation and so much more. Wealth over health seems to be this current government’s policy.

Yet today we celebrate, we celebrate 70 amazing years of a life giving organisation. We celebrate the dedication and hard work shown by NHS staff.

I say a massive thank you to the NHS, thank you for every extra moment you gave me with Livvy, thank you for my son and thank you for all that you do to keep those I love beside me.

Happy 70th Birthday NHS, I love you xxx

It’s your fault

Having a child with disabilities means I often find myself meeting with professionals who are supposed to be in place to support and guide me and make sure my child’s reaches his full potential. I use the world supposed because sometimes and some would say often this doesn’t happen.

I have met some amazing people who are incredible at their jobs and I have met some doozies who seriously need to either consider a career change or at least attend a training course on compassion, respect and understanding.

Yet thankfully I have never come across one like the one my friend has met this week. My dear friend is at breaking point she adores and loves her child with every breathe she takes but after literally sleeping for less than three hours on a good night for the last how many years she is broken. After asking again for the numerous time for a little support and respite she actually told a professional that she is close to breaking, she is physically and emotionally on her knees. To which the so called professional replied “well how is that going to benefit your child, you have a responsibility to keep yourself well for your child”. What the **** seriously I’m not sure how my friend stayed calm in this situation without demanding a manager or someone at a higher level but she did (I actually think she is just too tired to fight anymore). Yet how, just how can a someone say this, it’s not as if my friend wouldn’t love a good eight hours sleep each night, the chance to spoil herself and have a haircut, a night out on the town with the girls. She would desperately love this but as a sole carer, her child has and and always will be her priority. How is her exhaustion her fault?

I’m sorry but do people really believe this ? That parents of children with disabilities just cannot be bothered to take care for themselves.

Let me give you a little breakdown of my day,

It’s starts pretty much where yesterday finishes, I have medication to give at 12am, 6am, 8am, 12pm and 6pm. I also have an overnight feed to prepare from 12am till 7am, also another 8 Bolus feeds to give throughout the day.

I have a minimum of 10 nappy changes each day with all nappies weighed and recorded.

My child sleeps maybe 3 hours max at a time needing comfort, moving and generally loving throughout each night and that’s on a normal night. This can double or treble if unwell in any way.

To leave the house, besides feeding, changing and lifting my child into his wheelchair I also have to pack feeds, meds, and emergency protocols and emergency meds. I cannot ever just wing it and just grab my handbag and leave. His life depends on me carrying the medication he may need.

Let’s also realise that normal chores are often doubled or tripled, washing for example does not consist of the normal one outfit a day but the numerous we need from unexpected changes, sheets bedding etc etc.

Add to this caring for my child’s needs, dressing him, bathing him, moving him, lifting him and of course playing, amusing him and loving him.

Oh I almost forget I’m also my child’s personal assistant arranging, rearranging and chasing his numerous medical appointments, the EHCP paperwork, ordering his medications, his equipment and so on. I’m also his advocate fighting for the things that he needs to live with a quality of life he deserves, his voice and his fiercest defender.

So please tell me where or when I am supposed to take care of myself? And guess what I have a supportive husband, great older children and actually a care package that is working for me. For a professional to suggest my sole carer, 4 hours each month respite friend literally is bringing her ill health on herself makes me see red.

Times are hard, right now we have a government that believes everyone can make do a little more, well everybody besides the top 1% of course. My friend already has to make choices between sleeping and eating but hey I guess she can make do a little more. I mean who needs food? She loves and adores her child and so wants the best for him but all she was asking for was a little compassion and support, is that too much to ask?

If she does break and her child goes into a residential facility where he will need 2 carers to support him at all times he certainly will be costing this government so much more.

I actually didn’t know what to say to my friend when she told me what had been said, part of me wanted to go in kicking and screaming and demanding an apology for her. Yet I’m realising the problem is a lot wider.

When you have train companies believe it’s ok not to make trains accessible for disabled people, when you have superstores using disabled children for advertising whilst depriving them of the basic facilities to have their care needs met, I realise this world needs to change.

When you live in county where almost three quarters (72%) of carers have said they had suffered mental ill health as a result of caring, while well over half (61%) said their physical health had worsened.

You know things have to change.

I welcome the news released yesterday that a joint report by two Committees of cross party MPs, the Housing, Communities and Local Government and the Health and Social Care Committee, calls for new contributions from individuals and employers into a dedicated fund to be ringfenced to help pay for the growing demand for social care in the future. Highlighting the immense strain that the current system is under, including families providing unpaid care, the MPs have proposed a series of measures including a new “Social Care Premium”.

But there is a long way to go..

Figures released by Carers UK show that

1 in 8 adults (around 6.5 million people) are carers

By 2037, it’s anticipated that the number of carers will increase to 9 million.

Carers save the economy £132 billion per year, an average of £19,336 per carer

Over 3 million people juggle care with work, however the significant demands of caring mean that 1 in 5 carers are forced to give up work altogether.

Carer’s Allowance is the main carer’s benefit and is £64.60 for a minimum of 35 hours, equivalent to £1.85 per hour – the lowest benefit of its kind.

People providing high levels of care are twice as likely to be permanently sick or disabled

72% of carers responding to Carers UK’s State of Caring Survey said they had suffered mental ill health as a result of caring.

61% said they had suffered physical ill health as a result of caring.

Over 1.3 million people provide over 50 hours of care per week.

Again I will stress there is a long way to go.

Yet how hard or how little would be needed for those professionals in the lives of carers to actually think before they speak. To actually show compassion without passing judgement.

My dear friend hasn’t the energy to ask for an apology and right now is literally holding it together in her words “with Gods grace and the love of my boy”. But how many more are out there struggling feeling alone and broken?

I know how hard it gets and as I have said I am one of the lucky ones.

All I hope is that change will come but until then if you are struggling, if you are feeling alone please get it touch because none of us can do this alone but together we can and will make it.

A year today.

I cannot believe it has been a year today. After what seemed like such an endless wait our boy has been officially our son for a whole year now, where has this year gone?

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From the moment he came into our lives I knew I loved him and the professional detachment I was supposed to have, was completely lost. Yet still I never allowed myself to hope, to dream that one day he would be officially my son.

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I remember this day last year so vividly, everyone kept congratulating me but I couldn’t accept it, not until the very moment that the judge signed those papers. I was scared to dream, scared to hope, scared to believe until that paperwork was in my hands. I can still remember how I felt when he was introduced as our son. It was as if at that moment my resolve which wasn’t that strong anyway was lost and the overwhelming emotions of love was poured into my heart. I remember this feeling when having the girls, I loved them and was so excited when carrying them but nothing prepared me for the moment that they were placed in my arms, nothing prepares you for the intensity of love that you feel.

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Wow a whole year and what a year it has been, my gosh I love being Daniel’s Mom. The novelty of introducing him as my son is still as new now as it was then. Just saying his new full name still makes me smile.

I have so enjoyed watching him grow and develop this last year, watching his character emerge. From the little detached baby into this cheeky, mischievous toddler.

I love being a mom and I love being an adoptive mom, although some find it hard to believe I can honestly say that there is no difference between the children born from my womb than the one born in my heart.

Daniel is such a gift, his smile just blesses my heart its crazy, getting to love on him is well just wonderful.

How did I get so lucky?

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Adoption is such an incredible thing, it’s a journey of so many emotions. I have laughed and I have cried but now here a year on I am so thankful for this journey. Whilst at times it was so hard and I felt so scared, Daniel is so very worth every moment of fear, every moment of doubt.

All I can say to anyone right now, if adoption has every been on your heart please consider it. Yes you will give a child a forever family which is amazing but the gift that you receive is so incredible.

Hearing my precious boy call me Mama will never get old.

Happy One year of being adopted Daniel, thank you for giving me the greatest gift of being your Mama. Love you to the moon, stars and back again.

Lots of love and rainbow kisses, Mama xx

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I’m so happy.

When I started this blog last week it was in a way in sadness, of course I love having a place to share my heart, my words with you but I was grieving the loss of so many posts, so many shared moments. The loss of my old blog Chas and conversation hurt, in fact it sucked like crazy.

Well i’m so excited to say all that was believed to be lost has been found. My old blog had been saved and has been restored.

Now it would be easy to return to Chaos and conversation and carry on as before, but for some reason I don’t want to, somehow it feels less like home now, just a place I had been staying for a while.

So even though I risk the loss of followers, readers not coming over with me I have decided that this blog, Rebel with kindness is home.

I have thankfully managed to bring my words over with me, all posts have been exported and are here now within this new home. So please forgive if watermarks or references are different but here is my future. I’m just so happy so thankful that my words have been restored and my memories still recorded.

So please, enjoy the past as I’m so happy its been restored but also please join me as I build a new future here on Rebel with kindness.

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Hello

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Well hello there and welcome to Rebel with kindness. If you are completely new to me I would like to say a big hello. If you are someone who has followed over with me, thank you so very much.

Why a new blog?

The answer is I simply had no choice, unfortunately due to a number of reasons my old blog got deleted along with 10 years of my posts.  This has hit me hard, for the last 10 years I have literally shared my heart in my words, my pain and grief from losing Livvy. My joy and pride as I have watched my girls grow and my latest wonderful adventure adoption and the welcoming of my gorgeous new son into our family. I have thanks to the wonders of web cache’s managed to grab some of my old posts but so many have been lost. So, if you find the old posts here are a little out of sync I apologise, my oldest posts were saved in my first ever WordPress blog, Walking with angels so up to 2011 all is good, but from then on, it’s been a bit hit and miss.

Still what can I do?

Not a lot really, I did wonder that maybe it’s time to give up blogging completely but for the couple of weeks where I haven’t had my own little piece of the internet I have really missed it and when and if I decide to stop blogging I want it to be on my own terms not just something that has happened to me.  Also I have so many more adventures to share with you all.

So here we are?

I decided a new blog had to happen, I was struggling with names terribly, I mean what title, what name defines me and all that I am and all that I write about?

Well today I was in hospital with my son and the nurse was telling me how lovely I am, and I said, “I’m a rebel” to which she laughed and replied “Yes, A rebel with kindness”.

So here we are, welcome to Rebel with kindness, may today be the beginning of a new journey, a new adventure filled with memories, moments and a lot of laughter.

 

Let’s go……..