Sympathy belongs at the back of the drawer…. and elephants need keeping out the corner…

It can be hard. Somebody suffers a tragedy or bad news and we want to support them, but we do not always know how.

Sorry seems to be our grabbing word.

Sorry. Such a small word but it carries a lot of meaning and perception.

“I’m sorry you have lost your job” – seems adept for the situation, but what are you apologising for? That they have lost their job, or that they may feel upset that they are now unemployed. The context may be different if they had made the choice to leave, or if they actually felt positive about the outcome.

“I am sorry you may feel sad/hurt/angry/heartbroken”

It is very cultural and the question can be asked “why are you sorry, it was not your fault”.

Yet we still grab for it in any given situation. We still feel it punctuates the silence and the discomfort.

Maybe the sorry actually is that we apologise for that discomfort, for not knowing how to respond, and for not being mind readers.

It is really ok. We do not expect this level of comprehension from anyone. I’m uncomfortable situations, in the arms of diversity, tragedy, negativity, we struggle to make sense ourselves, so we certainly do not expect clarity from others around us.

Sometimes sorry is not the right word. Sometimes silence or honesty is better.

If I’m not sorry, then you certainly do not need to be, so let’s just smile at each other and laugh away the silence.

Even better, ask those uncomfortable questions, and move that damn elephant out of the corner… 😊👍🏻

Is social exclusion simply subconscious ignorance?

Having a disability can induce social exclusion, even from a positive place. The perspective of someone being ‘different’ can segregate them from society and alienate their own social needs and normality.

A wheelchair doesn’t change how someone feels or thinks. A walking aid does not make them need friends any less. It doesn’t replace the excitement of doing, and the contentment of belonging.

Often people find that it’s easier to consider disability as a separate entity, and even with the best will and compassion, this can prove a negative experience. There are limitations, there are differences, but these simply need accepting and not always highlighting.

That kid sat alone under the shelter in his wheelchair whilst his peers jump about in the rain? The girl left at the bottom of a staircase whilst her friends enjoy the delights above? Always waiting by the side of the fairground ride whilst they hear the laughter and fun of their peers? Watching their friends horse ride and jump on trampolines? Just one simple change of action or decision could diminish that feeling of loneliness and exclusion.

We can’t change the disability, but we can change our reaction to it!

When pregnancy is not picture perfect….cushion it in love

What do you do when you receive the news that your baby may have something wrong with their development?

That they have broken, or that they are measuring too small? There are serious problems and the experts carry trepidation on their words.

How do you cope with that?

Can you even comprehend this scenario?

Your life changes in front of your eyes, the fear…the anxiety….the unknown…

That woman you once knew has already changed even before she left the room. The father feels pressure like he never has before. They look towards one another and they both ‘get’ it but they cannot talk about it yet. It is too soon.

It is easier to pretend everything is fine.

Can you picture this? Do you see the micro expressions? The unspoken words behind the clouded eyes?

They have changed in response to this, yet the change was also needed. To become a chameleon, you need to be fluid and allow yourself to become part of your environment. To be as one with it, is to become more flexible and powerful. To own your own perspective and wear it like a shield.

So these parents stand taller than they ever have before. They see their baby reflected inside each other and they know that they are ready to fight.

Armed with dedication, knowledge, and motivation, they hold each others hands and step forward, ready to take on the world, and ever ready to cushion their baby with all the love in the world.

To love is to breathe

I had a thought in the darkest part of the night, ‘what if we loved instead of hated?’

What if we loved ourselves and felt comfortable in our own skin? Would it be really that bad to look properly in the mirror and look past the negative focus? To look deeper? Often we see blemishes of our own thoughts, shadows of our emotions, we are blinded by our own cynical lens.

How often do we appreciate a flaw as positively different? As unique? As simply us?

Do we hate on ourselves more out of insecurity and in fear of others judging us first? Are we afraid of the societal gaze and not measuring up?

Who the hell sets the scoring board? Who alters the bar? I often wonder if it isn’t our own doubt that leaves us feeling oblivious to our true beauty, yet to blame society seems just somehow 🤔

Social media does portray beauty in a can, falsifies the true natural state of a woman (and a man), but we can ignore this and take a stand to be whom we are….can’t we?

The opinion of others can only affect us if we let it, or if we perceive it. Beauty is standing tall and relishing in the chaos. Beauty is pure acceptance and that glow of radiance which is a result of being happy.

Happiness is not physical beauty. That’s simply a fabrication created within us. If we look good, we feel good right?

No.. because love is deeper than skin level. We need to accept and love whom we are, then beauty will own us. Simples.

Brittle Me

❤️ Brittle me – sneak preview 😜

Our joint project has been brought to life ❤️

As people know, our daughter has Osteogenesis Imperfecta (brittle bone disease).

We decided to coproduce a book to promote social inclusion and educate on osteogenesis imperfecta to children and adults, in a fun and appealing way.

All children want to be superheroes regardless of disability, and every child should feel included.

Please share as all proceeds go to brittle bone society

Available internationally!

Amazon.co.uk

Brittle Me Simply Me: Osteogenesis Imperfecta Broken Down https://www.amazon.co.uk/dp/B08H6TTCVG/ref=cm_sw_r_cp_api_i_bs.wFb6RXB1V5

Amazon.com

All proceeds to brittle bone society 🥰

Osteogenesis Imperfecta Federation Europe Brittle Bone Society Osteogenesis Imperfecta Foundation

That dreaded 20 week ultrasound….tick tick tick tick……

Laid in bed this morning thinking back over the last few weeks. My little girl keeps kicking me ‘mama, time to get up, come on mama get used to it, I will be here soon’

It puts a smile on my face and I lay here enjoying these personal and special moments that’s just the two of us.

Flashback to January 15th when the morning started the same. The excitement bubbling up as that day we were going to see her wriggling around, the sonographer telling us that she was growing and maybe catch a yawn or a tiny wave.

That’s what you expect eh. You never think that it will be you whom they go quiet on, their faces portraying concern at having to deliver bad news.

As a mental health nurse, this perplexed me, as this role is so important in a woman’s pregnancy. Mental health and positive emotional coping is just as imperative as eating healthy and taking those god awful multivitamins they constantly promote (on reflection and to confirm, I did take, and still do take those horse tablets). Another pregnancy ‘perk’.

As I lay on the bed, my own instinct to read situations and people began to kick in, and I sensed a feeling of uneasiness. You can feel it can’t you, like a wave of insight flowing from another into your every fibre. She dithered with her hands and stumbled on her words as she told us she needed to leave the room to seek support and a second opinion.

Looking back, Jesus, it was dramatic. I could almost hear the rain drums thumping in the background as they began to hit their crescendo…

Honestly? My heart began to sink and my usual brave demeanour began to slip past my false smile and now beating heart.

I don’t really remember the full conversation but I remember the words, Down syndrome, dwarfism, dysplasia…

These words went through my head for almost a week as we waited to see the consultant on 22nd for a further scan.

Mental health I mentioned earlier? In my shoes. Looking back, I ask again, why is this not considered at this crucial moment? This is horrifying for a couple, anxiety provoking and plain scary. Watching paint dry, as the hours and the days tick tick by.

I value the NHS. The support we have received since is amazing, but at this moment, and for almost a week later, we were stuck in our own hell. Just a waiting game.

I found support through social media, through my friends and family, however i am proactive. That’s my personality. What about the people who aren’t?

There is a prominent gap in support services. This grey area which can be absolutely amazing but on reverse can bring you to your knees.

At the scans, we are already mothers. My baby was already kicking and making her presence known. Every time I threw up, I rolled my eyes and told myself she was worth it. Being a mummy outweighed it all. Yet I spent a week almost, unable to sleep, not knowing the fate of my unborn child, and had no health professional advising or reassuring us. Unfortunately we are simply one couple. I hate to think of the worry people are facing every day. As a mental health nurse it perplexed me. As a mother it breaks me.

Since this I have researched on social media and the internet, and the amount of women who have tried to conceive for years. Their miracle baby. Don’t the health professionals understand that in that one moment, their happy ever after may be ripped apart. Why isn’t this considered from a crisis perspective?

They need a voice. We all need a voice. Changes only happen through education, awareness and willingness to stand up.

Now I will get off my soapbox….. for today…..

Dress it up or keep it real

Every day we become a different version of ourselves. We are different from the day before, yet we remain fluid in this transition, and can put our costume on depending on the situation.

As individuals we encompass so many roles, and with each role comes a new list of responsibilities, expectations, and individual traits. Often we can forget who we are and become lost in the tunnels of the internal empire which we create.

We can become so many things to so many different people that we lose who we want to be. Our identity becomes tinged with confusion, and the lines begin to blur.

The role of a mother or father is complex. We need to love, to care, teach, to supervise. We need to instruct, to share, to advocate, and to guide. We need to constantly risk assess, yet also step back and watch from afar.

We see others and have to fight the comparisons, the judgements. We need to see what is real and diminish the frosted front.

We watch with our eyes but often feel plagued by our own doubts and insecurities, until our eyes are questioned, and life becomes much more chaotic.

A lioness with a beak or a fish with claws… often we hinder our strengths by forever envying and comparing ourselves to others. We inevitably often fail and then simply fall back into the cycle of self doom and negativity.

Sometimes we just need to strip the masks and face life head on with simple naked emotion. Show each other whom we are and become the definition which we seek.

Real. Uncomplicated. Alive.