Dear Social media users

Dear Social Media Users

The power we have at our fingertips should be used wisely. Our words now hold so much more force than ever before. The whispers between friends are now being shared across the globe, gone is the ears of few now to the ears of millions.

Growing up I was lucky to have a wise grandad who once told me “don’t say what you wouldn’t want sharing across a room”. I don’t think he had in mind the expanse of the social media reach but I do feel the concept, the sentiment is the same.

If we realise that nothing we share on these platforms is private maybe then we will less quick to press post, less willing to share.

I sometimes wonder if it’s a good thing, the way a persons innermost thoughts are now shared so widely. How opinions that have been in the shadows are now out in the open.

I worry about the influences on our youth, the perceptions they take as reality leaving them feeling inadequate, not enough.

The cultivation of hate, the rise of right wing hate, religious hateful ideology and the vicious muck spreading of lies. All finding itself a wider audience thanks to the power of virtual connection.

Yet still I don’t hate social media, I really don’t.

It has brought into my life some amazing people. People I wouldn’t have come across in my lifetime, separated by distance or just circumstances . It’s been an incredible resource on my late daughters disability and now my son’s. I’m learning, I have learnt more than I could have imagined most that I would have never have known without this source of knowledge.

It has created communities of support, raised awareness and reached out and brought love to those in need.

But personally I think it has come to a point that we now need to be reminded of authenticity. Times gone by a journalist couldn’t publish a story without having the evidence to prove its claim yet we have only got to look at the press of the recent times to know that this is no longer the case. Smear campaigns, lies and pure fabricated hate is shared across many communication mediums.

I wonder when the ability to write any old rhetoric got confused with the freedom of speech?

I wonder when one person’s opinion became fact?

When one persons fear became hate?

Should we be policing the internet, to be honest I don’t know?

As a person in this country we do have a right to think the way we wish. What we don’t have though is the right to act upon it if it causes harm to another, if it’s malicious in its intent. If it’s to incite hate?

So maybe thats where the policing needs to be, cracking down on those who abuse this form of communication. Those who troll, bully and intimidate others. Those who spread lies and feed the evil of this world. Police those that exploit the vulnerable, predators of any nature to all to face charges of a harsh kind. Intimidation, abuse, torture of any kind physical or virtual should come with the same punishment, a hard one.

But beyond all of this we as people have an obligation to each other to remind ourselves that what we say can be heard beyond the room. That by the words we use, the posts we share we take a responsibility for the substance. We cannot say we did not know anymore, we did not realise.

Ignorance is no longer a defence.

Let’s use social media for the communication it should and can be, one of joy, one of upliftment and one of knowledge.

Be truthful and be kind.

Many thanks

Sara

My baby is 18

How is my baby 18 today?

My last born has reached adulthood.

It’s crazy, I mean I cannot actually believe it.

My shadow, my little bundle of kindness and sass.

Let me tell you a little about Miss Brodie Lea.

Entering the world on the 3rd March smack bank in the middle of her sisters regression she learned quickly to be self sufficient, a little too much at times. She was a light through some very dark days. Her character just lifted everyone. From refusing to wear trousers until she was about eight, her crazy addiction to shoes, she was just the kindness, gentleness daughter, sister ever.

Her heart was wore on her sleeve for all the world to see.

Her desire to see her sister do everything she did to be part of everything was beyond her years.

If anyone every spoke harsh about Livvy my life she was like a tigeress protecting her cub.

It wasn’t just Livvy she fought to protect or care for, she used to rush to open the doors for elderly woman, had the biggest hugs for her class mates.

Her passion for inclusion and acceptance was and is something that makes this Mama’s heart beat proudly.

Growing up wasn’t easy for Brodie, losing Livvy broke her heart and whilst it would have been easier for her to close down and protect her feelings she did the complete opposite loving harder and welcoming new members to our family with her whole heart no matter how long we had them for. She was my inspiration in this, after the loss of both Livvy and little man I was so ready to close my heart off, I couldn’t do it anymore. Brodie called a family meeting and reminded us that if we hadn’t be brave after Livvy, little man wouldn’t have known love, if we wasn’t brave again then what legacy are we making for him. She was so right but the bravery of this then nine year old was something I will always be so incredibly in awe of.

But she isn’t just her caring nature, though the huggable hero’s, born to brave, fostering network, mayor civic award and the Wellchild awards may show, this well, she is also one of the funniest people I know. She makes you cry with laughter sometimes without even trying. Her innocent and sometimes dizziness really make your heart smile. She goes at everything with the energy of an excited puppy often being the contagious excitement we all need.

It’s fair to say the teenage years were hard for my baby girl, her caring heart in an increasing insular world has left her a little battle scarred. The hierarchy of senior school never made sense to a girl who just wanted to be friends with all. For a while I lost my beautiful girl to fear and aniexty but even in her fear her character stayed kind, her compassion stayed pure.

If I was to tell you my daughter was beautiful you would probably think I was talking about how pretty she is and don’t get me wrong she is blooming beautiful but it’s not this beauty I focus on. This girlie just breathes love.

Well Miss Brodie Lea, Happy 18th Birthday sweetheart. I’m praying adulthood is all you deserve. May you reach your dreams, may you know love and may someone cherish your heart as it deserves.

Never settle lady, nothing is beyond you and never ever lose your giving heart.

I love you baby girl, all the way to the moon and back.

Happy 18th Brodie xx

P. S Dad says can you please slow down around the corners.

Living to love

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.

Starting well

So I’ve the started the new year the way I wanted, prioritising where my focus and energy needs to be at this given time in my life. It’s amazing how pure exhaustion and sleep deprivation can make you more focussed and determined but it is something that’s been on my mind and heart for a while.

It’s been a mixture of emotions, I have felt a lot of guilt. Saying no or I can’t doesn’t sit easy with me but there has also been an enormous feeling of relief. I am focusing on giving myself breathing space, areas of calm and a chance to grow in the direction I want to.

Why is looking after ourselves so hard? Is it a female thing? My husband has no problem with saying no in most areas, sometimes without a second thought. He does not twist himself up inside and second guess himself. He makes the decision based on his needs and time. Whilst sometimes this drives me mad I do admire his commitment to himself.

Every book or information I read tells me that self care is a must, that to be a better wife, Mama or generally better I need to rest and recharge yet I never seem to block time into my diary, or I give it up easily.

So yes whilst I’m feeling a lot of mixed emotions I know I’m taking the first steps in the right direction. I’m making plans just for me and beside Daniel’s health I am not changing them for anything else. I can already feel the change in myself. Right now I’m fighting a cold virus and whilst I feel blooming awful I don’t feel pulled apart by all the people I would have perceived in my head to have let down.

So I’ve started as I mean to go on. I now only have to reorganise the house, look closely at my finances and get some more sleep and I will be well on my way to a more relaxed 2019.

Here’s hoping.

My word for 2019

So here we are on the eve of a new year and the ending of a old. I cannot say that 2018 was the hardest year of my life as nothing compares to 2008, but my goodness it has sucked at times. 2018 has been a year of growth, I’ve learned more about myself than I could have ever imagined. For years I have been professing self confidence or self awareness but this last year I have owned my words. I am very much a work in progress and I have a lot let to achieve and change. Still I am so ready and have already began, who needs a date on the calendar to start, everyday is new beginning a new opportunity to live the life you want.

2018 has brought me so much, I have friendships I cherish, new opportunities and exciting moments that have become incredible memories. We didn’t get to experience many adventures but that restriction in itself has allowed me to grow and finally learn my self worth.

That leads me nicely to my word choice of 2019, WORTH.

2019 is the year I want to continue working on my worth. Learning to see the value in who I am. Appreciate all that I can do. For a long time I have mixed up self worth with ego. That to pat oneself on the back is egotistical and wrong. I’ve searched for the value of myself in others opinion’s not knowing my own truth. 2018 has taught me some hard lessons, that sometimes no matter how much you try or do for others it doesn’t always make them respect or love you more. That I am also not responsible for everything in this world, that others have responsibility too and that sometimes things will just not work out or be as you wish it to be.

I’m learning that it’s ok not to actually like others, that it’s not evil to just think that you don’t want that person in your life.

Realising that the things you do should be in joy not just obligation. If you find yourself dreading a meeting, a group that you don’t actually need to be part of you can leave. It’s not letting people down by admitting that this isn’t your place. I mean what use are you if your heart and mind are not invested?

I have realised this last year that I don’t need to belong anywhere, sometimes I want to and that’s fine but I don’t need to. I can go places and enjoy the moment without wishing I had been invited into a group or a conversation. I am finally happy in my own skin.

Non of this is saying that I don’t want people in my life in fact just the opposite, I want to find true value in friendship, build stronger bonds and definitely make more memories.

I’m excited for 2019, I’m nervous of the changes it will bring especially as we continue to foster and extend our family. I’m excited to watch Daniel grow and start staying at school longer. I’m praying his health is stable and he gets the opportunity to live fully. I’m terrified that my baby girl is going to become an adult this year, it was hard watching her sisters come of age but she has and always will be my baby so it’s hitting harder with her. My girls have all changed so much over this last year. I’m hoping 2019 is a year of goal reaching and dream making for them. Also for the two loves that have their hearts you two are both family and I pray 2019 brings you both your dreams ( beyond my beautiful daughters of course).

For my long suffering husband ( his words ) Alan. I want you to share my word with me, you are one incredible man and I only wish you would know this more. I wish adventure for you and excitement full of joy and memories. Remember to laugh a little more and just enjoy the moment just because.

As for me I want to continue my journey of loving and laughing. I would like to be a little more organised and a lot let anxious but I’m ready to celebrate who I am right now and who I will become. I’m excited for 2019 a year of making more memories. Of only saying yes if I really want to and allowing myself the freedom to grow and learn.

May it be a good year, may we make it a good one because let’s be honest the date on a calendar does not define our destiny, we do.

A date I didn’t want in my diary.

When your child is born your mind is full of the moments that are coming. The special dates that will fill your calendar. You start planning for the celebrations, their first birthday, their christening, their first day at school. Your mind races forward into their future, will they fall in love, will they be happy? So many will they be’s just as it should be, yet no parents expects to add, when will I lose them? How do you add how to plan their funeral to this future planning list?

Yet when your child is born with complex needs these thoughts invade your mind even when you try hard not to allow them. You live in a constant battle between hope and fear.

When we were told by Livvy’s consultant that he couldn’t promise us forever our minds went to places no parent should ever have to go.

When we lost her, another date appeared in our diary. Not one of celebration but one of brokenness.

We do mark the day we lost Livvy yet I know others that don’t, they don’t want to dwell on the day they lost their child and I get that. Yet for me personally it would always be the elephant in the room, the day my heart broke into pieces.

We take Livvy flowers and decorate her grave, not in celebration but in appreciation. Thankful for the gift of being her Mama, for the wonderful nine and half years she blessed this world.

It may seem strange to some but the day we lost her is a day I have to acknowledge, an anniversary I have to remember. I have to allow my heart the space to break and my mind to grieve. It’s a day where I can admit that life sucks without her and I’m still annoyed the world keeps on turning.

It’s also a day where I remind myself how lucky I was to have her and how my journey isn’t finished. It’s a day I love harder on her sisters, her new brother and of course her Daddy. I hold on to the gift of life and the memories we have and those we have still to make. Make plans for magic moments to come. Places to visit, friends to hug.

Yet the only thing I can guarantee about this day is that I have no idea how I will feel and that’s perfectly ok. It’s a day I don’t have to enjoy, have to make special it’s a day I just have to be. To be whatever my heart needs it to be.

Whatever we need it to be x

Happy 3 years #notanurse_but

Have you ever been awake at 3am suctioning a child, praying that you can stay at home and not end up visiting your local hospital yet again?

Spent your night making up medications? 

Changing yet another bed, fixing another tube?

Giving another injection? 

No 

I have and thanks to the #notanurse_but campaign I know that I’m not alone. 

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That when I am exhausted and feel close to breaking, I am not alone. 

When I am scared of what the future may be, I am not alone.

The gift of having someone who gets it, who lives it can never be underestimated. 

Yet when you are living a life that’s so alien to many it’s literally priceless. 

 I am so thankful for Wellchild and it’s #notanurse_but campaign, for highlighting the impact of caring for a child with complex needs.

For shining a light on a subject that seems to have hidden in the darkness for such a long time.

The campaign has allowed professionals but also family and friends a little insight into this world that we live in.

It has highlighted areas of need.

It has campaigned for awareness, understanding and progress. 

So many have come to me after watching the videos shocked, but with more of understanding of the life I live. With a new awareness about why I cannot make events, why I cancel so often and why I look so tired.

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It’s lucky he is so cute x

I am so proud to be a Wellchild parent ambassador, so proud to know some of the amazing families that have taken part in the #notsnurse_but campaign. 

Proud of the way they are shaping services, and campaigning hard so that our children’s voices are heard.

Incredibly proud of the way members lift each other daily, supporting, encouraging and sharing the vast wealth of knowledge that we have. 

Making the world in which we live feel less alien. 

Making us all feel less alone. 

Today is the third anniversary of the #notsnurse_but campaign, three years of incredible support, guidance, awareness and friendship.

Happy anniversary #notanurse_but campaign. 

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