Not a thing

I know people mean well but sometimes I want to scream “shut the heck up. “

Only the other day I was having a conversation with someone who I have known for a while. I won’t say we are friends but we chat when we bump into each other. In fact sitting here now I cannot actually remember how we met but anyway hey ho I digress. Me digress what a shocker.

Anyhow we were chatting as you do when she turned to me and said “ I don’t know how you do it, I don’t know why you do it” then the clanger “you have to give up so much”.

Now before I seem like a complete bitch I know she meant no harm but the “it” she was talking about was fostering, adoption and ultimately Daniel.

Yet you see adoption isn’t a thing.

It’s a heart, a heart that you are promising to love, care and protect for a lifetime. It’s a web of emotions, a tangle of heartbreaks and brokenness that you have committed to hold in your arms and whisper I love you’s to.

It’s a gift, a blessing and hard work all rolled into one but it’s never about giving up it’s about getting so much more.

I know the questions was aimed at the special needs aspect of our adoption but Daniel isn’t his special needs, he is everything all squashed together into one adorable package.

I’m not going to pretend it isn’t hard at times it is but that’s ok, life was never promised to be a bed of roses.

When I met Daniel I didn’t see a list of conditions, it wasn’t the pages of hospital notes that won my heart, it was the way his tiny hand gripped my finger. Not opening his eyes or turning towards me just holding my finger tight.

My heart just opened and he jumped right inside, right then, right there.

He had my heart.

I knew it wasn’t going to be easy but I truly believe that the best things in life aren’t.

I know my friend didn’t mean harm and I wasn’t offended but this is something we have come across so many times. People telling Alan and I how amazing we are caring for such complex children. How lucky the children are.

Children in foster care aren’t lucky that they have a new home. Their hearts are broken and their souls sore. What they knew is gone and even if it wasn’t the best of experiences as they often aren’t It was what they knew, their normal.

Children who get adopted aren’t lucky, the parents who now get to call them their child are the lucky ones.

My girls, Alan and I, we know we are fortunate , we are wonderfully lucky that we get to love upon children that need it. We get to open our hearts and our home to children who need us. We get to love, care and cherish.

How incredible is this?

As for Daniel I haven’t given up anything to be his mama, I have been incredibly blessed that I get to call this wonderful little boy my son.

My heart, my boy.

Sorry I couldn’t rise.

I’m not sure where my head has been for the last few weeks, I’ve completely felt a detachment from the world. On the outside looking in. I’ve been falling into an abyss of what if’s, what should of been’s and to be honest a hornet’s nest of why not’s.

Social media has been full of graduations and moving on photos and I’ve just felt angry and raw.

Grief isn’t pretty, it doesn’t come tied in a pretty bow. A ornate basket with a jar of missing tears and bottle of memories.

No grief is a raging ocean, dark, bottomless and threatening to pull you under at the least expected moment and I’ve been drowning.

I feel such a bitch but I’ve scrolled past photos without commenting, without celebrating the achievement because I was angry, I was resentful because Livvy didn’t get to celebrate it.

I couldn’t drag myself up out of the pain to celebrate others when there will be no prom for my girl, no sparkling dress, no fancy shoes.

There will be no graduation for my daughter, she didn’t even get to complete primary school let alone head out of education into the great unknown.

I hate that I’m angry, I’m appalled at myself for being jealous but my goodness missing her hurts In a way I just cannot describe.

There is always going to be moments that are raw, moments that should of been and I’m always going to try and be ok about them but I’m never actually going to be ok with them.

There will always be a Livvy shaped piece in my heart. Always another tear to fall in missing. A breath to be lost in grief.

Rett Syndrome took so much from us, it took Livvy from us and right now I’m tumbling into grief, anger and complete sorrow.

I miss my girl, I miss her so damn much.

So to those who I haven’t celebrated this last few weeks I’m sorry. My heart does sing for your moments, I’m so very proud of all of you and I’m so sorry. Sorry that I couldn’t rise from the depths of missing this time, sorry I didn’t have the strength to pretend.

I just miss my beautiful girl so,so very much.

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.

So what it’s the weekend

Seriously it’s official if I see one more TFIF status today I may just lose it. 

So what it’s Friday that doesn’t automatically mean that tomorrow I get to do nothing. No tomorrow I will still have to get up to do medications and nappy changes. My back will still ache from lifting and if we follow on from our current evening schedule I will also still be sleep deprived. 


Oh it’s the weekend so that means my big boy is off and that brings me the joy of chasing him around and saying “please leave alone” every second for two days. 

All joking aside, ok moaning aside I do appreciate the end of a normal working week and that for many tomorrow and Sunday are days of relaxation but seriously stop rubbing it in. 

Please think of us exhausted parents those like me to who the weekend is just another day. In fact the weekend is actually a little harder as school does give me a little respite. 

I absolutely love my life and fostering a child with special needs is a great job but the reality of it is that it is 24hr, 7 days and week and 365 of the year. Being a mom of a complex needs child means exactly the same. So as a mom and foster mom of both I may be slightly shattered. Though as we enter the weekend of Mother’s Day I am so thankful for my boys. It just means at times I just have the urge to strangle those who write TFIF. 

Inspire or destroy?

Last week I was lucky enough to get to listen to the inspirational Nick Barwick. Nick is a motivational speaker who came to a fostering meeting to share his experiences as a care leaver. His story is incredible, he has faced adversity, pain and suffering throughout his life but still found the strength and courage to achieve his dreams, he defied the odds and he overcame.

Nick is passionate about sharing his story, he wants the success stories of life to be shared. We need our children to have hope, that if they are struggling and finding life a struggle they can remember that where they are right now is not where they need to end. This is doubly important for all children within the looked after system, they especially need the reminder that there is Hope in this world.

I took an awful lot away with me after listening to Nick speak, but what has been twirling around in my head since I left the meeting was the impact of ‘words.’

Let me explain a little, as Nick was sharing his story he spoke about being told by some professional in his life that he would not achieve, academically, financially and emotionally, and how these words for a long time became a self fulfilling prophecy for him.

How the words spoken to him became the words he spoke to himself.

Words have power!

They can inspire but also they can destroy.

words

Hearing Nick’s story just hit home how important our words are,

How as Mother’s, as fathers, as teachers, carers, our words have an impact on hearts.

How as a friend, a wife, a sister I need to use my words wisely.

How often have we let words spoken to us bury deep in our hearts?

How what may have been a passing comment has be able to consume our minds.

Someone else’s opinion become our truth.

I know I can look back in my life and raise my hand numerous times for when words spoken in hate became my reality.

“You won’t pass it.”

“I wouldn’t even bother’

“You are not good enough”

“Who would love you?”

How I let these lines of letters sink deep into my heart like an anchor dropped into the ocean, dropping slowing until they find a place to settle and hold, hold on tight.

How I  have allowed hurtful words to crawl under my skin until I believed them completely, burying under my skin into my blood to pump through my veins, straight to my heart.

Burrowing deep until I owed them as my truth.

Thankfully like Nick I had someone in my life who challenged me to question these words. To remind me that my future was mine to create.

That it was up to me to write my own story. 

story-of-your-life

I’m still a work in progress, my story has many chapters left to write.

I’m still learning to throw away the words that hurt, to erase the words that are wrong and untrue.

To protect myself from words that do not inspire or encourage.

I’m creating my own vocabulary and as I do this I hope to create another for my children.

I want their story to be one of adventure, excitement and hope but what I want most of all is that the biggest chapter that they write will always be one filled with love.

I pray that story is one of knowing, knowing how loved they are. 

Survival of the fittest 

Ok the holidays are coming to end and I’m ready to scream hurrah, I honestly don’t know what happens to me over the summer. It truly feels like I’m at a survival camp just trying my hardest to get through each day.

Don’t get me wrong I love my children but keeping them occupied for seven weeks is insane. It’s just to long, way to expensive and certainly not good for my sanity. 

The issue I have as a special needs parent is that my children love and need routines the slightest change can bring down an avalanche of anxiety and behaviours. The thing is I don’t want to be doing the same things everyday.

Take my eldest son for example he would happily wake up every morning have a shower, brush his teeth, eat breakfast then sit and watch the chart show countdown. He would sit there from 20 to number 1 over and over again. Only getting annoyed when a song he doesn’t like comes on. Don’t get me wrong I love music but my goodness how many bieber songs are in the top 20, it’s crazy. Also how dare there be adverts I mean what.. 

Routines and more routines. 

I don’t actually mind some routines especially the one where the kids wake up and the school bus arrives and I wave bye bye.

No all joking aside summer has been hard, yes having a new little one has left me craving for sleep and dreaming of a hot cup of tea but in all honesty it’s been rather awesome. 

We have had some lovely time away, Mablethorpe and those beautiful seals. Special kids in the UK camp and getting to spend time with friends old and new. 

Memories made and laughter created but hands up right now this mom is so ready for the start of school. 


I am actually dreaming of my alarm clock wake up call and school uniforms. I think my boy feels the same as he keeps bringing me his school bag and his answer to my ” are you fed up of mommy ” question was met with a firm yes. I would be offended but I completely understand him. I mean I’m actually fed up of myself. “No more music” “but that down” “do not lick the dog” I’m so tired of my own voice. 

So hallelujah the end is in sight the days are in single numbers and the uniform is ready to be stamped. Life is looking brighter by the day. 

And for those who think I’ve disappeared this summer I do apologise. 

It has genuinely been a case of survival of the fittest and in my family the kids won hands down. 

Countdown to 40

40

 

I realised last night that in under a month I turn 40. This is a major milestone in my life but one I am so excited for.

Growing up I remember thinking 40 was really old, I mean it seemed that my mom was 32 forever so I was sure I would stay this way. Yet time has moved on and I have been slowly creeping towards this age.

I remember when I turned 30 I was really freaked by it all, I didn’t feel ready to be 30 years old I was uncomfortable and not happy in my own skin. Life wasn’t easy and I had just started to show signs of the illness that changed my life. I look back to those days when I was chasing after 4 children under 10 and teaching dance. I remember just not feeling complete as if I wasn’t living life to the full.

Fast forward the last ten years and my goodness a crazy amount has happened. I have walked through some of the darkest moments of my life. My heart has been broken, tore up into millions of pieces and then trodden on. I never imagined at 30 that I would have to bury a child let alone two. I would have never been able to comprehend surviving the loss of my daughter and my foster son. Never in a million years. Yet somehow I have survived, my heart may never be complete but it is learning to love on, learning to beat strongly again and I am learning to live life to the full again.

I know deep down that 40 isn’t really a special age. I mean I preach often about celebrating every day we have here, but still I am rather excited for the day.

This may sound big headed but I like who I see in the mirror now. I may not be a dance teacher or able to fit my bum into a size 12 but I truly love my body and I’m so grateful to it. It has given me four amazing girls, completely different, independent ,inspirational girls. It allows me to foster two truly awesome boys, each a blessing in their own special way. My body may be a little battle worn but it’s not been beaten and I am so thankful for this.

I look back to the person I was 10 years ago and I know I have been on a journey. I use the term “self discovery” loosely  as is the only way to get close to describing  the transformation I feel I have faced.

I love who I am (yes I may have said that before) but I seriously do. I love my emotional side, no more will I apologise for my random tears or unexpected hugs. I’m empathic and I care and this is something I am proud of now. No more calling myself soppy and pathetic, I actually rock.

I love my courage, I am more willing to put myself out into the danger zone, being vulnerable, feeling scared but still moving forward.

I love my brain, it’s ok that I am a little geeky at times, that sometimes the idea of a good book wins against a movie or a night out. That I appreciate my own company and yes at times I get lost in my own mind.

I love myself and I love my life.

As I head towards this birthday milestone I do so with so much gratitude.

Over the last years I have had people walk into my life that have blessed me in so many ways. Friends that love me for me, deep true friendships that can pick up after a time apart just where we left off. Friends I can laugh with, friends I have cried on. I am so grateful for each and every one of them.

I am so thankful for my family, my daughters and my sons each so unique and so beautiful. Getting to watch them grow and learn and experience life is such a wonder, such a gift. My Dad, my Step Mom, my inlaws, my aunts, uncles, cousins, relantionships that I truly value and people I truly love.

My husband, I am completely in love with this crazy man, after nearly 20 years of marriage I still get that flutter in my heart when he walks into a room. He makes me laugh, he drives me insane, but he truly is my soul mate.

I am so thankful that I miss my Livvy, because missing someone is the recognition of an amazing love, a truly unbroken bond. My girl and I will be together again one day, but until then I am going to try and live as she did, fully and with all my heart.

So the count down to 40 begins and I’m so excited. I’m so ready to celebrate the 40 years I have been here with all my family and friends. An evening full of laughter, music and hopefully a gorgeous outfit.

Yet 40 is only the really the beginning, the start of a new stage in life, one I hope will be full of love and laughter and the people that really make my life truly amazing, my family and friends, because with them and because of them I actually love myself more at 40 then I ever did.

 

40 looking good