Rabbit hole

Have you ever found yourself falling down a rabbit hole, I do often. In fact it’s something I recognise about myself that when something interested me or intrigues me I have to learn more. I can lose hours to learning more, researching and trying to understand.

You see I’m not a face value person, just because someone says it is doesn’t make it true. It’s the reason I have struggled at times with religion, society norms and in general life.

I mean even the history we learn has been written by someone with bias. In fact the way we view life is with some form of bias, our upbringing, the beliefs shared, even the political landscape of our country.

It’s something I struggle with a lot hence the falling down rabbit holes often. I mean if something is said, who said it, why did they say it and where’s the evidence?

I love to read and learn and this is something I’ve always enjoyed but sometimes it would be nice to just say it is because it is.

I often wonder is my brain is strange, the way it views everything with a little mistrust. I really don’t understand people when they quote me the Daily Mail or some other media outlet as truth, I mean come on. You do know journalism is bias from the outset. Be it the ownership or political leading or the blatant scandalisation to sell more it should always be questioned.

But beyond bias I’ve realised that the world is so big that I have hardly touched the surface of my understanding and knowledge. This is exciting and sometimes upsetting I mean I like to think of myself as knowledgable but the reality is I don’t have a clue. I am knowledgable in my small piece of life but my goodness they is so much I do not know. What if I believe something, yet more knowledge would show me I was wrong?

Do you ever feel this way? That you have so much to learn? That you actually don’t know enough?

See rabbit hole.

I often struggle with anxiety and sometimes I do wonder if it’s because I cannot stop the thinking. Throw away comments often get stuck in a loop in my mind requiring research, understanding often beyond what I need to know. Reciting of conversations seems to be a hobby of mine.

My husband frustrates me to my core he doesn’t think past the here and now. He can lose himself in TikTok for hours, get obsessed about a new car and do research for this but when I ask him to think beyond his immediate world he isn’t interested. “Why worry about what I cannot control” or the worst one “just stop thinking about it”. I mean come on as if that’s possible. He frustrates me partly because I would like him to think a little more and share the worry and stress but mostly because I’m just completely jealous.

I’ve always been this way, when I was young and I asked my Granddad a question he would encourage me to either go to the library and read books on the subject or ask others and get a variety of viewpoints. I loved our conversations they could be so random yet always interesting. He never allowed me to view the world one way, he would remind me that everything’s is dimensional and we need to know all the dimensions to make an informed decision, ooh I wonder if it’s his fault my mind has no off button ha ha.

Beyond the sometimes brain exhaustion and anxiety I do love my inquisitive mind. Yes sometimes it breeds anxiety and fills me with fear but I do love my rabbit holes and learning. One life doesn’t have to mean one view of the world, we are a world of so much culture and beauty and yes a lot of darkness and hate but even that grows from a bias, a different view that I maybe cannot understand unless lived.

In the special education needs world we often say that all behaviour is a form of communication but to be honest I think this concept is wider. The way we behave is often based on what we have learned, our actions based on what we believe. Our beliefs start with what we are taught. So the way we behave is communicating who we are.

So to understand one another, we need to understand the lives we each live.

Rabbit hole anyone?

Explore

Day three #hopewriterlife

I never thought I was one who wished to travel. I never got the itchy feet or desperate need to go exploring. But I’ve realised I hadn’t learn my passion yet. Over this last year my son Daniel has become obsessed with animals and veternairy programs and from joining him in watching them I have discovered a desire to go places and explore the wilderness. I have fallen in love with places from Yorkshire to the YukonI. want to go visit the places that we watch. We started with the beautiful Yorkshire last year and I have fallen completely in love and seriously would pack up now if I could. The beauty of the area has literally enriched my heart.

I want to go see the animals in their natural habitat or as close as possible. I want to explore.

Actually I want to explore more than I have ever have done and I mean ever before. I think sometimes you have to find you to find out where you wish to go. Over the last year along with Daniel I have got lost in the learning of Gods beautiful creatures. Watching, learning has left me with a desire I never knew I had. I mean I’ve always liked animals but never wanted to know them as I do now. The idea of just waking up surrounded by space and animals just sounds so wonderful to me. Forget the big cities they have never held excitement for me, give me mud, grass and air I can breathe in deep.

I think it’s so easy to just assume you should go where others go. The places chosen by others do not have to be your places. Understanding this has allowed me to understand me more and the places I want to explore.

Sleepless in the middle.

I am wondering about life too much, my mind stumbles over the what if’s, the maybe’s, the should be’s. I am feeling lost and I am not sure why.

This last year have been hard on so many, the losses, the isolation, the fear has placed a heavy toll on our society and yes I have missed so much and my worries for Daniel’s health, his anxiety, his fear of people leave me with a uneasy feeling I can not shift. Can I get him back to where he was physically, can I get him back into school, can I stop him having such awful panic attacks? Are all questions I cannot answer right now. Yet I have a quiet acceptance that a pandemic is trying times and holding on to what should be, seems lost in the thankfulness that we are still here when so many others aren’t. The fact that I can worry about Daniel is a gift that I am trying to be grateful for. How strange is that of a statement being grateful for a worry, maybe it’s the fact that I have one child in heaven that I desperately wish I could worry about once again gives me this perspective.

I am trying to be thankful more,I cannot stay in this negative fear based reality anymore, if I do I don’t think mentally I would survive. For months I have been obsessed with numbers, with testing, with symptoms with fear. Frightened that allowing anyone into our lives would be a risk that I couldn’t take. Honestly I have been awful, hating my husband for his RC racing, for talking to someone outside a store, the fear of everything being so overwhelming that my stomach has not settled for months.

So I am trying to fight the negativity in my mind, giving thanks for the vaccine, for the lateral tests, for the research, for the scientists and especially for the wonderful NHS those that haven’t given up when many would have done.

I’m trying to find a balance between safety, protection and living. Daniel and I cannot hide between the walls of our home anymore, I cannot hide anymore.

So as I write this I am in the one of the places I swear my soul knows, North Yorkshire, we visited here for the first time last year and I never wanted to leave. The people, the places, the air all somehow allows my soul to breathe deep. I know my worries and fears haven’t disappeared but in the openness of this country my heart just finds peace.

Its not perfect, I mean today we tried to park our wheelchair adapted van in Whitby and it so didn’t happen, besides people deciding they fancied dicing with death crossing roads, today we just could not find anywhere to park our big van that allowed us to get Daniel’s chair out. So after a rather stressful (husband) drive around the town we gave up and decided to take Daniel to Staithes the little seaside village where Old Jacks boat was filmed. The information we read told us of the lovely harbour, the beautiful quaint cobblestone streets it forgot to mention the heart attack hill to the harbour. Holding on to Daniels chair for dear life as we went down the hill, returning up was well actually fine as I sent poor hubby up to drive the van down. It just wasn’t safe for us to push Daniels chair up the hill the gradient was so high it would be an extreme risk and thats my excuse and I am sticking with it. Also Old Jack’s boat wasn’t to be found. So as I was saying far from perfect but somehow it just felt different.

Full disclosure I am not a great traveller, especially now with Daniel. Anyone who is a parent of a child with complex needs will tell you packing for your child feels like planning an army mission. You cannot just wing it because the things you need cannot just be picked up at the local shop whilst you there. Medications, pads, feeding supplies, formula, syringes the list is endless. This is all after I have done my recognisance on the area, where is the local hospital, will it cater for my child, is there a specialist, PICU etc etc ? The worry of making sure I can keep Daniel safe does weight heavy but again full disclosure he is so worth it all. But yes it does impact on my desire to travel. My girls used to joke I had to say “I wasn’t going” at least three or four times before we finally got into the van. I personally blame them I mean essentials for a weekend away does not mean you need 8 pairs of shoes, also underwear is a must.

Anyway back to my title of this post, its 2am and I cannot sleep yes the heat isn’t helping, yes the desire to suffocate Alan for his snoring is strong but mostly my soul is restless. It’s a weird feeling like I am supposed to be doing something but I just don’t know what. I feel a tugging at my mind telling me something but what it is saying is just out of my hearing.

Does any of this make sense?

I am not sure but for some reason I think change is coming. I don’t feel anxious about this change which is a miracle in itself, but I do feel itchy as if I am ready to get started. Maybe it’s Yorkshire I mean they make the best tea here so I definitely could believe its a county of change, vision and hope.

I am just going to try and get some sleep and see what tomorrow brings. Whatever the sunrise brings with it I will try and be thankful and stay hopeful.

Sleepless in Yorkshire in the middle of what is yet to be.

Desperate

I woke last night screaming, somehow my sleep had become a time machine and I was there again in the hospital begging my child to wake. Desperate to see her chest rise again, begging the Lord to save her.

How can 12 years just disappear in a moment?

Yet I know in grief, time is only my enemy.

I miss my girlie so much, how I wish I could just hold her in my arms once more, to just breathe in the sweet smell of her hair.

Grief is a complex devil, playing games with your heart moment by moment, memory by memory.

Does it ever end?

Only with eternity I guess.

Oh I never knew the heart could survive such pain. The crushing weight becoming bearable against my wishes.

I don’t want to sleep again, I had to leave her once I’m not sure I could do it again.

Why does your memory invade your dreams?

Is there nowhere free from grief?

I couldn’t pretend for a while, I could not create the facade of being ok in those darkness hours. So I let the tears fall and as my whole soul hiccuped through my body I allowed myself to miss her.

I let the memories swarm my mind like a tapestry of bees as they create their honey, I created my moments again. I held her in my arms, I heard her sweet giggle of mischief on the symphony of the night and I breathed her in deep and I sobbed.

I still don’t understand why I had to lose her, why Rett Syndrome had to win the battle for her life. Yet I know it wasn’t for the lack of love. My Livvy, their Livvy, your Livvy was loved with the depths of so many hearts.

If love could have saved her life she would be here.

No the question still stands unanswered, our hearts still forever broken.

I couldn’t breathe anymore the tears had tore my soul and I did fall into an exhausted sleep.

I wake still desperate to hold my daughter once again.

The new day begins,

I trust, I breathe and I hope.

Until we meet again my beautiful girl, until.

Joining in again with five minute Friday, set your timer for five minutes and write.

Let’s banish “I’m fine”

I swear my body and mind are in conspiracy to drive me crazy. My body aches and I’m so tired I can barely keep my eyes open. I finally fall into bed and ping, my mind starts its endless racing. Have we done this? Did you remember to do that? What about this? What about that? What happened, what if this happened oh my goodness please stop.

I read a post the other day, a friend not a close friend we haven’t met but someone who matters to my heart reached the darkeness and her world was so dark we nearly lost her to it and my heart broke. Yes the joy of the nearly was full of gratefulness but the sadness that the facade of social media had not let us see their pain.

But it’s hard isn’t it, to raise your hand and say I’m struggling.

I call it my advance and retreat. I try to be honest, to be brave, to be raw then in the morning light my weakeness fuels my shame.

I should be coping

I’m so blesssed

Others have it worse

Be grateful

Others have enough on their plates

Don’t put on others

Stop being dramatic,

This last statement is my core enemy.

My childhood was full of being told I’m to dramatic, to emotional, too much.

Even now the narrative is different yet still hauntingly the same, you care to much, what if doesn’t happen, let it go.

Still shame based observations of my heart.

You see we are all unique and whilst the stiff upper lip is so celebrated it is also the weight that holds so many people down.

We should be taught from an early age to be open and honest. Tender hearts should be celebrated, anxiety understood, overthinkers heard.

Our children should learn from day one that the way they feel is perfectly ok. If it doesn’t make sense to others that’s also fine, that the world would be a boring place if we all thought and felt the same.

But we aren’t are we, our children are taught by rote, uniformed to be, to do, to fit.

To be seen and not heard once held by parental control now often controlled by technology.

Yet we should know better, with the ever increasing levels of mental health issues we should be better.

“I’m fine”’should be banished from everyone’s vocabulary. “Are you ok” should be asked with truthful concern. We should listen deeply and we should take time to care.

Yes the world is a busy place, yet the viewing numbers of the last reality programme proves we have time. Yet it’s easier for us to invest in the loves and lives of those we don’t know because no effort is needed. So yes we have the time or can make time to check in on those that we know and should care better for.

So why don’t we ?

I know I need to do better, I need to reach out more, when a friend goes quiet just check in. But I also need to be honest to create a place when it’s safe to speak our truth.

To not hide behind the illusion that’s I’m ok when I’m not. Someone once told me that they couldn’t speak to me about a problem, they felt that my life as hard at it seems meant that they didn’t wish to put upon me. But also they felt ashamed because I was doing well in my journey how could they complain? This broke my heart, I am far from ok, sometimes I lie in bed and beg my mind to leave me alone. To just for a moment stop thinking, stop torturing me with agony of what ifs or what should be. I’m not ok and maybe if I’m more honest in my struggles and vulnerabilities it will allow the others the space to be transparent with theirs.

Hey, we can not be ok together.

I do not believe we were supposed to live this life alone, but alone it will be if we don’t let those we love know our hearts.

So here’s to being truthful, to banish “I’m fine” and to reach out.

Let’s be better

Let’s do better

Let’s love better.

Drive

I never imagined I would drive, I come from a family of HGV lorry drivers and after watching them manoeuvre those gigantic machines I simply thought“not me”. The responsibility, the awareness needed all seemed out of my grasp.

It’s easy isn’t it to tell yourself that you cannot do it. That it does not happen to people like you, it’s out of your reach, beyond you.

This is what I thought as I sat in the public library one day, no matter how many notebooks I filled with my stories, poems, songs holding a book I had written in my hand was beyond me. Seeing a book I had written on the bookstore shelf well that didn’t happen to people like me.

Well it did and it has, yesterday my first children’s book was released. I’ve got to hold my dream. I’ve overcome my fear of failure, my fear of not being good enough to hold my story in my hand. To allow the dream of my heart to be realised. My hope printed from my soul.

It’s strange as today feels like a game changer, just like the day I passed my driving test (not HGV’s) and the world became larger for me. Today the world feels a little clearer, my mind a little braver and my heart a little stronger.

No more telling myself what I cannot do or what shouldn’t happen to people like me. Im going to dream and dream big and drive forward with conviction, with belief.

Belief in me.

Joining in with five minute Friday

1. Write for five minutes on the word of the week. This is meant to be a free write, which means: no editing, no over-thinking, no worrying about perfect grammar or punctuation. Just write. Write, post then link up.

Dreams do come true.

Oh, my world, this is a post I have only ever dreamed of being able to post. A dream that my heart has held since I was a very young girl. From the orange exercise books my grandad used to buy me weekly from his pension visit to the post office to today. 

Today, when I get to tell you all that my first book is ready for pre-order. 

I still cannot believe I get to write this!

My book is ready for pre-order woo hoo. 

This is so amazing. 

Writing stories has been something I have always done. I actually cannot remember when I started, I just know I found my escapism in the lives I could create for myself in the stories I wrote.

I could be the Sara I wished I could be. 

When my children were born, the bedtimes stories were often ones made up on the spot, allowing my children to be whoever they wish to be. I wanted them to know that limitations were only those of their imaginations.

Dream it, be it. 

So here I am being my dream, being the Sara I wished I could be. 

A published author. 

Yes me, yes Sara you.

A published author.

Isn’t it beautiful

Available for order.

https://olympiapublishers.com/authors/sara-meredith

We all deserve to shine

How do you stop that feeling of inadequacy forming in your throat? When others words and actions feed into the negative narrative you already have for yourself.

Why do I allow them to make me feel so low?

Why does their opinions matter so much and why oh why do I allow them to speak their lies over me?

You see I am enough,

I am more than enough.

I am a kind, caring, emotional women who has the right to be. I don’t need to fit into the boxes of others and I definitely don’t need to allow others to feel better about themselves as they hurt me.

Enough is enough.

I’m learning to have boundaries, learning to ignore (or at least pretend to) and I’m trying not to allow others to tear me down.

It’s took me a long time to like who I am. A longer time to see the value in who I am. I need to stay in this place.

I deserve to be in this place.

For a time I actually wanted to do life alone, to not have opinions around me that fed my negative narrative. Loneliness felt like a antidote to self harm. Yet I don’t have to live life alone, I can do life with others as long as I have boundaries and I make sure respect is given as it should be.

I’m not your plaything, I’m not the one you can beat down on because you are not feeling good about yourself. I am a heart, a soul that deserves to be.

So if you are like me and have allowed others to tear you down please stop. You are who you are meant to me. I mean let’s put this into perspective, every blade of grass is unique so why shouldn’t you be?

Also if you are one of those that need to beat down on others to make yourself feel better then stop. Does this behaviour actually make you feel good? Do you like who you see in the mirror?

I’ve come to the conclusion that life is hard enough without us adding pain to ourselves. Maybe we aren’t where we wish to be, we want to be healthier, we want to get a promotion, a relationship, a family whatever those are goals and goals are great, but beating ourselves up on the way to achieving them does not help, belief me I’ve learned this the hard way.

Life is going to throw curve balls, dreams are going to be lost but that’s part of the journey. Knowing who we are in ourselves is the only way we will find peace.

Validation from others is only a short term placebo.

Know your heart, know your strengths and know your beauty.

Never allow anyone to dim your sunshine.

We all deserve to shine.

I would rather lift up than tear down.

I often wonder that when God was handing out empathy he gave me a double dose, you see I often find my heart overwhelmed by things in the world. The sadness, the fear, the loneliness and so much more. There are days where I have to avoid the news because my heart cannot handle it.

For a long time I saw this emotion as weak, I saw the pain that I felt for complete strangers as stupid. But now I know different, extra dose or not I am proud of my tender heart. I admire my willingness to love hard and I cherish my desire to lift up others rather than tear them down.

You see to lift someone up isn’t easy, it would probably be easier to not care, to not bother, to not reach out a hand to pull another to their feet. Yet I don’t think we were supposed to live life easy. It’s in the hard we realise who we are, it’s through the decision moments we decide who we wish to be.

I want to be one who lifts, I want to be one who encourages and I strive to be one who loves.

This world tells us often that we have to be ruthless, that everything is about competition that we have to be the best. Walk over others to reach the top, destroy others to reach your goal. But this narrative is wrong, the joy of celebrating a victory you achieved together will always feel better than a lone success.

Joy is amplified when shared.

In a world that is so torn let’s come together to change this, instead of turning our backs lets reach out and lift up one another. Because a separated society will only breed more sadness and hate. A society that works together can and will achieve great things. Let’s just give it a try.

It’s not ok that our children died.

Often when we face a loss in our community of special needs parenting, our hearts break alongside those facing the pain. We emphasise with the anger and missing we feel the disbelief and sadness. Myself personally I ache for the pain I know those left behind will feel. Each new loss reopening a wound that is far from healed.

Yet one of the things I still do not understand about loss in the disability community is that from those outside of it, is the feeling that somehow it’s acceptable. That in some way it is less. The concept that a life lived with a disability is not as full as one without.

There is no denying that being part of the special needs community we face loss maybe more than most, the wider our community the wider amount of pain. But that’s our life, we choose to walk alongside one another through the good and the bad. We celebrate the achievements and too often we have to grieve the loss.

Yet often those outside the community do not understand our journey and more often than I would like, do not understand our joy.

Statements like “oh well she had been poorly for a while” “sometimes it’s for the best” or my favourite (irony) “God knows best”.

When Livvy died she had a devastating neurological condition. Her body faced so many obstacles, seizures, abnormal breathing, sometimes uncontrollable movements. Yes, to list her conditions it may seem dire. Yet what the reality was that yes she had this list of issues but what she also had was a life filled with love and laughter. She had a family that adored her, she had parents she wrapped around her fingers. Sisters she teased and played with. Teachers she adored, friends she loved. Her life was full of joy and mischief. She was not her list of conditions. Yet still when I speak of my missing, people speak of her with pity. When I speak of her loss, people speak with acceptance, as if her disability makes her death more ok.

Whilst I know this attitude is meant with kindness I need to share that it’s not. When someone who has a disability dies it’s not ok, it’s not even a little ok. It’s a heartbreaking, soul destroying grief.

You see people are not their disabilities they are simply people. A child with disabilities is simply a child.

So I beg of people, I ask desperately that when dealing with a grieving mother, a broken father a missing family, that before you speak of freedom from pain, limited lives or God’s choices, STOP. Whilst the lives lost may have seemed hard to you, or the disabilities overwhelming those grieving see the little boy whose eyes twinkled as he looked at them. The little girl whose smile lit up the room, their son, daughter, sister, brother. We don’t grieve the disability, we grieve the one we loved and their disability wasn’t what defined them. Our pain is not less and their death is not and never will be acceptable.