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.

She should have been 19.

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

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

I want to celebrate what should be her special day.

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

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

How can you smile when forever seems so far away?

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

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

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

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

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

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

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

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

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

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

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

No sadness, no sorrow, no more”

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

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

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

I can try my darling girl,

I promise I will try,

My heart wants to fall into a million pieces,

My soul just cries out in missing.

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

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

Happy heavenly 19th Olivia,

Happy birthday Livvy xxxxx

Capture those moments

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.”.

Honestly if I can challenge you all to do something this year it would be to capture those moments, don’t be like me wishing you had.

 

Living like Livvy

So it’s finally here, a years worth of work, a lifetime of memories all collated together in “Living with Livvy.”

I’m so excited to share my girlie with you all, for you to read and learn how incredibly brave and courageous she was. I’m also feeling extremely vulnerable as well. Here in these pages I have not held back, I have opened my heart and my soul and its laid bare for you all to see.

It’s not been an easy journey, i have returned to places in my mind I was trying to hide from. Revisiting some of the hardest moments I have every faced.

Yet it will be worth it, if this book educated one more person about Rett Syndrome if it raises more funds for Reverse Rett Uk it will be worth it.

So people, I am laying out my heart and soul here for you all so please, please support me in this venture. Go visit Amazon and purchase my book and help me raise much needed funds, help me help those working tirelessly to one day have Rett syndrome cured. One day have this diagnoses be one not of fear.

It can happen and it will happen,  let’s help  make it so.

Please visit Amazon and purchase the book, please let your friends, family, coworkers know about the book. Share this post on your social media, lets get “Living like Livvy” out into the hearts of minds of everyone. Lets make Livvy”s legacy really one of hope, lets do her proud.

No drama

I had a friend once, I use the term friend rather loosely now but then she was what I would class as dear to me. We had walked though a lot together and I assumed we would continue to do so.

Then when in the midst of Livvy’s regression I was crying down the phone to her when she uttered the words that have scarred my heart for such a long term “I swear your life is like a trashy soap opera, everything happens to you, or maybe you just like the drama”.

I remember the impact of these words as if it was yesterday. How anyone could believe that this was the journey of life I had wanted to take was beyond me but to accuse me of being dramatic hurt. In fact it hurt so much that I shut down, I didn’t allow my feelings to show. I closed the door on that friendship and many others in fear of judgement.

Why am I telling you all this?

Because I am in a place now where I am ready to own my own story. Ready to embrace what I have lived, not with echoes of shame but with pride.

Having a child who was born with a debiliatiting condition was hard but not knowing what it was and not expecting it was literally a nightmare. I cannot find the words to explain how painful it was to lose my daughter to Rett Syndrome, twice. Watching her eyes leave my face, her words disappear from my ears and her movements lost to the stereotypical.

To see the fear in her eyes as she screamed and screamed, crying out for me to rescue her. It broke me in inside, I cried out to God so often to heal her.

But he didn’t.

Yet slowly and surely he healed me.

I finally began to embrace the journey I was set upon, although it was very different from anything I could have ever imagined it was full of wonder and joy.

Joy, does that surprise you?

My daughter had a severe devastating condition, my son has a very complex disability but both of them loved, loves life in a way that brought, that brings me so much light.

It’s took me a long time to get to a place where I don’t apologise for what some see “as drama” in my life.

I have surrounded myself with people who get it or who try to understand it.

I have walked away from those who don’t or who don’t want to.

I can accept that some people cannot understand the life I lived or now the life I have chosen and that’s ok.

We are never going to be a typical family and I am embracing that, celebrating that.

Yes at times I am lonely and I do get sad at having to apologise for another missed get together, group activity or friendship meal.

But my children will always be my first priority, always my heart.

I don’t know if my friend understood the impact of her words or how they would change me inside. Maybe it was meant as a throw away comment that wasn’t supposed to find roots and bury itself deep.

Maybe it was my state of mind back then that fed and watered these seeds of deceit.

I don’t know and I actually don’t care.

Because I’m not that person anymore.

I cannot say that harsh words don’t still sting or dig deep in my heart, but they don’t get to stay and or get to take root anymore.

I am stronger than I have ever been.

I have faced the darkness of death and my memories, love brought me the light.

I face the suffocation of fear but my sons smile breathes air into my lungs.

My children are my world, they are the air that I need to breathe.

I am stronger for being their Mama.

My faith is stronger than my fear.

To love is to be vulnerable

I am in a little bit of a state right now, anxiety is winning the battle for my mind and my soul.

I hate that I get this way, I wish I could lie still in the peace of faith but I cannot. In fact I suck at lying still anywhere.

Tomorrow my little one is having an MRI which requires him to have a general anaesthetic and the fear of the ‘what if’s’ are just eating away at me.

Do I pack for more than a day? Can I trust he will be out on the same day as planned and the major one and the truth of my heart, will he be ok?

My head tries to remind me of how many people have this kind of a test each day, how its a simple non invasive test but my heart just is screaming “My son”.

Having a child with complex needs leaves you open and fearful. Your heart and mind goes to places many others never venture. Being a mom who has lost a child my mind has been there and lived it and somehow is just about surviving it.

So why do I do what I do?

This is a question I get asked a lot, mostly from parents who have children with disabilities or those that have lost a child. Why do I put myself back there. Why have I adopted, why a child with complex needs and why do I risk my heart again?

To be truthful I am not sure I have an answer for this question.I think we need to go back to the beginning. I truly believed I was a weird child, I struggled with emotions and worries before I even knew what they were. Sensitive to other people’s feelings to an extent that would have me cry myself to sleep with another’s pain. The world seemed a scary place and people often cold and distance. I didn’t understand people and to be honest I am not sure I actually do now.

I would watch people destroy each other with words out of hate, jealously or indifference and I just wanted to run and hide. I tried often to lose myself between the pages of a book preferring the lands of make believe to reality. When books didn’t work I turned to alcohol just to allow me the freedom from thinking, from caring. A few drinks in and life made more sense or so it seemed. But with sobriety came reality and my reality was that I was difference and that was something I had to find a way to accept, to understand.

I had to learn to embrace who I was and the ways of my heart. Understand that oblivion wasn’t a place I could stay or actually a place I really wanted to be.

I had to find what made me happy and that journey of self acceptance started with my marriage but mostly from becoming a Mom. I guess this reads as mush but I truly believe being a Mom allowed me the freedom to know and understand true love. Everything I wanted for my children was what I had always wanted for the world, It was a real aha moment.  But being a Mom is scary stuff besides having to feed, clothe and keep these little ones alive you are the window through which they start to see the world. I never wanted them to feel weird or difference. I wanted them to realise that they were unique, that each of them had been individually made with purpose. That they were exactly who they were supposed to be.

But guess what if my children were made with purpose and they are exactly who they are supposed to be then by default this means so am I.

Yes I may be a little weird or strange (I’ve been called) my heart may break more often than others and I may love with an intensity that seems insane to others but this is me. This is my heart and just as my girls were perfectly formed in my womb I was in my mothers.

I still strive for answers to questions others don’t understand, I think way more than should be humanly possible (my husbands words) but I am who I was meant to be.

I love to love. 

This is me in a nutshell.

I love the joy of knowing that someone understands how valuable they are, how they are a gift to my life in so many ways. I want everyone on the planet to know their true worth.

Happy clappy, airy fairy, who cares, I am who I am.

So why wouldn’t I be sitting here in a state of fear loving a child that was not born to me. The biology bit is irrelevant, God called me to be his Mama and I am so damned happy he did. Yes it’s scary, yes I am fearful but I am so blessed to love this kid.

Why did I adopt?

Why not, when there are children in this world that needs a home and someone to love them, why shouldn’t I. The complexities of anyone comes in so many difference forms, who cares, we are all uniquely and wonderfully made.

I feel C.S Lewis says it perfectly here, “to love is to be vulnerable” but after spending so many years of my life trying to stay in that dark and safe casket I can truly tell you that right now I am fearful, but I am living fully.

Anxiety, heartbreak and fear they are emotions that do and will often overwhelm me, this is part of who I am. Acceptance of these is still journey I am travelling. But non of these compare to the joy of living my life fully, how being true to my heart is freedom in itself.

Losing my balance

There is a saying that “if you want to make God laugh tell him your plans”. Well I think the same should be said for Daniel as soon as I told him about my excitement to attend Blog on Xmas last weekend we then ended up on our local children’s ward.

All joking aside whilst I was gutted to miss the blogging conference being by his side is exactly where I want to be.

Thankfully he is doing ok but it’s another reminder of how life likes to throw you curve balls.

Daniel has a form of diabetes that needs balancing, too much or too little can cause us an issue.

Finding balance isn’t easy but it’s a life lesson we all really need.

It’s been a busy couple of months in my chaotic household it’s not an over exaggeration to say I survived summer by the skin of my teeth. I’m exhausted and emotional not a great combination.

Finding balance has been far from easy.

Life is being a little strange right now, relationships are changing and I’m hurting myself with expectations that often get crushed. My lack of balance is affecting my clarity I’m trying to see the wider picture which isn’t that easy when you are smack in the middle of the situation. Taking a step back isn’t always my first decision and hindsight is just that , hindsight.

Plans can and will change and whilst I thought I was getting better at accepting this I’ve realised I’m holding on to so many things that I really need to let go.

Change is inevitable so I must learn to flow with waves and just sit back and enjoy the ride.