The joy of social media comments…

Sometimes social media can be a wonderful place to be, together we can celebrate and we can support one another. But at times it can feel like a place of oppression, ignorance and sometimes damn right hatefulness. Whilst I have to accept that everyone is entitled to an opinion I also have the right to disagree with it.

So I decided to share some of the “wonderful” comments I have received and my responses, enjoy….

Why are you always moaning about something? 

This is a comment I have received regarding my advocacy for children with disabilities and the governments lack of consideration of them in the schools recovery plan. 

Well let me just start by saying I am not moaning, there is a difference between standing up for your rights and moaning. When my child and others like him are being ignored by a government that is supposed to represent them I will speak up. When a government tells you that “every child matters” yet treats mine like a second class citizen I will speak up. Believe me when I tell you I wish all I had to worry about was the football score (Come on England), but my sons physical and mental health matter.

“We deserve our freedom” 

Oh it’s freedom you want,  yet yesterday our government passed a bill that robs us of our right to protest, but its ok because you can go dance the night away in a nightclub. Honestly please work out what freedom actually means before you celebrate it. 

“It’s not our fault you have a disabled child”

First up my child is not a fault he is a gorgeous amazing young man that overcomes so much. It’s no ones fault he has these disabilities just as you wouldn’t blame someone who has cancer or other illnesses, fault is not the issue. 

What is the issue is the discrimination he has to face due to people who believe he is faulty. The ignorant, the misinformed and mostly the selfish who only care about themselves and a current government who sees no value in those not earning in the top 10%.

“The NHS has to cope it gets enough money” 

I cannot believe this comment, the NHS is one of the most underfunded organisations in our country yet one if not the most valuable. The fact that the NHS is struggling is not due to the dedication and hard work of those that work within it but the systemic underfunding and disrespect and desire to privatise by those in power. Our NHS is full of wonderful people our Drs and Nurses, NHS professionals should be held high in respect not treated like casualties of war. 

“Maybe you should just send him away like they used too”.

How to reply to this one without swearing is hard, personally I know where I would like to send the commenter. Yet I’ve decided that someone who comments like this deserves pity not anger. I am so sorry your life is so pitiful that you cannot see the joy in mine. I pity that you haven’t found a love like I have for my son, that you cannot know the joy your life can be filled with.

Daniel is a blessing in my life that I am so thankful for. I will continue to advocate, shout, scream for as long as I need to get him what he deserves. I will exhaust myself if needed to give him a life that is happy and content and I will love on him with every breath I have. 

Children, adults with disabilities are not a burden to society they are human beings just like everyone else but they face discrimination and ignorance daily. This is where the issue lies in those that don’t or who choose not to value all people. 

As for social media I will continue to use it, I refuse to let a few take away from the overall good that I take from the connections I make on line but if you do choose to comment like this on my posts I will challenge. No one and I mean no one has the right to disvalue my son and believe me if you try you will meet mama bear in all her ferociousness.

My Joy xxx

Loving hard

Being emotional.

Is it a bad thing?

For many years now I have felt it is.

I have held back my heart, my feelings, my emotions.

And I feel suffocated.

 

Years ago when I was a teenager my Nan told me that wearing my heart on the outside would get me hurt.

She was talking about my heartbreak over a boyfriend at the time and she was trying ease my pain.

She said that I needed to hold my head high and act as if it didn’t matter and that i was ok.

I know she meant well but I believe I took that advice a little to literally.

 

You see I do love hard.

Its as simple as that.

But over the years I have held back.

Tried to be someone I’m not.

Taking words as emotional, dramatic, as insults.

Changing who I am to please others.

 

Even when Livvy died I never allowed myself to let go.

I didn’t fall apart, scream at God or generally let rip.

I held on.

I could tell you that it was to be strong for my girls, or my husband but that would only be partly true.

I held on because I was scared to let go.

If I let myself fall apart would i be able to put myself together again.

Well I was praying about this last night and God gave me this beautiful image of a mosaic and he reminded me that some of the most beautiful things in life are made from broken pieces.

Mary-And-Jesus-Mosaic

I have to allow myself to break,

Allow myself to really feel.

Holding back is suffocating me.

I can’t breathe.

 

I do love hard.

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It is who I am

I am emotional

I am dramatic

I am all or nothing.

But I love with all my heart.

I will fight to the death for those I care about

and I will be by your side always.

Remember if I love you, I will love you hard.

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Blogging should be fun not frightening

Sometimes I find myself sitting at the keyboard completely blank.

Its as if my words have just disappeared.

I want to write words that are wise and full of wisdom.

Yet I am far from wise and as for wisdom, heck i don’t even have wisdom teeth.

When did blogging become frightening for me?

When did i start to feel pressured by my own words?

I wonder if the influx of bloggers has made me more aware of my own writing.

To be honest I haven’t got a clue.

What i do know is that its time I got over myself.

When I started this blog i wrote because I simply loved it.

I wanted to share my life and experiences.

It didn’t matter if anyone actually read it.

My words were simply for me.

So this is where I need to get back to.

Finding my freedom in my words.

Blogging should be fun.

Not frightening.

 

Don’t pity me for being a blogger.

I am getting so tired of seeing the look on the faces of people when I tell them I’m a blogger. It’s as if in that single sentence I have become a second class citizen. As if my writing is nothing but a little hobby that I have taken too far. As if publishing my words is a cry for attention.

This makes me angry probably more than it should, but I am still working on those self belief issues.

You see I don’t write as a hobby.

I don’t write as a cry for attention.

I write and I blog simply because I love it.

When I first published a blog post it was in determination. I wanted to show that raising a child with Special Needs was hard yes, but that it also brought you a lot of joy. I was tired of people feeling sorry for me for having Olivia. I wanted them to see what a gift she was to me.

I wanted to share my ideas and experiences with anyone that was willing to read.

After Olivia died I considered giving up blogging. I felt that I have nothing left to share. Then somehow I found myself writing about my grief and my pain. I expected these posts just be shared between family and friends but then I found other grieving parents contacting me telling me that my words were helping them. That they were finding comfort and strength in my posts.

So I carried on writing

In the last 6 years my blog has become my friend. Its a place I bare my soul and times yes I may over share but I do wear my heart on my sleeve and my writing shows this. I cannot make apologies for who I am.

This blog has been on a journey with me. As my tagline states “a journey through this chaos we call life”.

This blog has brought me some amazing opportunities. I have attended some great events and received the opportunity to write some fantastic reviews.

It has also given me a platform to educate and inform people about Special Needs and Rett Syndrome.

This blog has brought me into contact with people who have become friends, dear friends.

But beyond all this, on this blog I have found freedom.

Freedom to allow the words that have been running around inside my head a place to fall out. The endless journals of bygone days are now being filled here in my virtual diary.

I can accept some may never understand why I blog. But please don’t pity me for being a blogger. I am blooming proud of this piece of cyberspace I call home.

Freedom not fear

So the relevance of the coming weekend seems to be passing many by. The media is full of images of chocolate bunnies and roast lamb, yet the true reason behind the celebration is missing. Perish the thought that the cross would be mentioned, that Jesus who died in a truly horrific way for us would be spoken about in main stream media.

It feels like its shoved under the rug.

Hidden out of view.

Political correctness?

Yet why celebrate if there is no celebration?

Personally this weekend means so much to me. The cross is my freedom, my new birth.

My truth.

I am a sinner yet Jesus’ sacrifice washed away my sins.

Cleansed my soul

Set my heart free.

Yet this Easter feels a little different than others, maybe because I’ve struggled this year. Not with my faith but with being part of the church family. I’ve reverted to my old habits again. Barriers up and closing myself in.

Again the crazy thing is I know better. How can I build up friendships if I lock myself away?

How long will people be willing to try if i hold them at arms length?

I want so much to be part of a church family, to have my heart stirred up each week by passionate preaching and friendship.

Yet to find this I have to be there.

My head tells me one thing my heart says another.

My tired battered heart is frightened but here at Easter I have to remind myself of the courage of our Saviour.

Remind myself of the sacrifice he made so that I could live in freedom not fear.

Freedom not fear.

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May your soul glitter.

“All that is gold does not glitter,
Not all those who wander are lost.”
― J.R.R. Tolkien, The Fellowship of the Ring

Have you ever wanted to just escape?

To be somewhere where nobody knows you?

No expectations.

No preformed opinions of who you are or who you should be.

To become anyone you desire.

To be

To be free

From the moment you are born you are someones child and their expectations their opinions are influencing who you are and who you are to become.

From the foods we are fed to music we hear.

EXPECTATIONS

Society breeds conformity, it rebels away from people who don’t tie the party line.

Labelling, grouping, controlling.

Why do we as the human race try to create groups, clones ?

Why do we not celebrate individualism and self expression?

Why are there right ways or wrong ways

Sometimes the journey is more important that the destination.

Sometimes the searching is more important than the finding

Getting lost should be the celebration of a new direction.

Life is for living,

May you wander freely

May your soul glitter with your freedom to be you

Be the you,you wish to be.