My son wasn’t a acceptable loss.

As always here on the internet we come across and connect with some amazing, inspiring people but also some truly awful trolls that need to return under the bridge they came from.

These last months I’ve been very open in my grief, transparent and vulnerable, to be honest the only way I know how to be. Yet in my vulnerability I have come across a few that just don’t or choose not to get it. They seem to find it acceptable that Daniel died of Covid because he had complex needs. He is one of the few they believe are “acceptable losses”. One going as far to say he was going to die anyway, I mean how dare they ! There is nothing ok with Daniel’s death, there is definitely nothing acceptable about him catching Covid through the ignorance of others. His death is not validated by the percentages. His death is heartbreaking devastating and I and many others miss him desperately.

Disability does not mean less and in a world that supposed to be one of progression this archaic belief is shocking and one that’s so ignorant.

What if those who have trolled me these last few weeks take a drive out and end up in an accident and find themselves disabled, do they at this point become less? Would it be then acceptable for them to lose their lives to covid? Of course not, their value doesn’t change by the ability of their bodies.

Yet I wish that these beliefs were only those of the under bridge ugly society but the reality is there are not. Disability is still seen in a negative way, a less way. Parents fighting for their children to get the same opportunities as their peers, equal opportunities in career development and growth. Support, care systems all so lacking and don’t get me started on the fact that equipment and aids that would make a difference to a persons life are classed as not needed, beyond the basic requirements or my favourite (not) out of budget. We live in a country where is ok for us to fund the second home of our politicians yet we have people unable to leave their houses due to a much needed ramp being beyond budget for this year. Human beings being left in pain using ill fitted or outgrown equipment being told of a two year waiting list. Yes disability is seen as less, people with disabilities are not valued as they should be.

Equality feels like a myth.

So I guess I shouldn’t be surprised that some keyboard menace decided to break my heart with their apathy. How they could chose to say the death of a seven year old beautiful boy was acceptable.

Still what scares me more is this belief that Covid only kills the vulnerable, those with underlying conditions. The numbers show different, the lives lost show different, marathon runners, sportsman, dancers, armed forces personnel all have lost their lives to the evil of Covid. Until this recognition hits home and people understand that Covid isn’t discriminative, it doesn’t care who it kills the number will continue to rise and hearts will continue to be broken.

As for my heart well pieces of it are in heaven waiting for me. Until then I will continue to advocate and campaign for a world where people are valued equally. Where disability is seen as difference ( I mean who wants to be the same ) but not a burden, not less. As for the trolls I know they won’t ever disappear as the world is full of bitter ignorant people but I can choose to hold on to the fact that I am so blessed, so incredibly lucky that I get to call Daniel my son. I will always miss him desperately because he did and does matter.

Happy International Women’s day

Todays is International women’s day a day when we celebrate the achievements of woman. A day where women are recognised for all they do.

To be honest part of me is frustrated that we need a women’s day or a men’s day, shouldn’t we be celebrating all people at all times regardless of their gender? Still it is nice to see the media full of amazing inspirational women whose gifts to the world should be recognised.

It is said that being a woman in today’s world is exciting and yes it is. Maybe we are heading for a society where the bar is starting to even out but we are still a long way off from equality . I do wonder if it is an easier time to be a woman? Societies expectations used be a woman should stay home, keep house and raise the babies and whilst that’s now classed as old fashioned have we really moved further along? I feel that this is still expected but now we are frowned upon if we don’t look amazing and also have a successful career as well.

One thing I find as a woman is that vulnerability seems to be shameful. To admit that I haven’t got all the answers, that I cannot be all things and that sometimes I screw up is a big no no.

It’s seems in the quest to be perceived as equal we have to be cool, calm and collected. All things I am not.

So does this make me less of a feminist? Less of a women striving for equality?

Erm no

Being a woman, being equal is being exactly who I want to be.

Society is trying hard to create illusions of who we should be, how we should look, what our place is in time, the roles we should play.

Well screw those stereotypical manipulative notions. I will be who I want to be.

I have and will continue to raise my daughters to know their own worth. To know their own minds and to walk their own journeys.

I want them to know that the end of the day only themselves can make them happy. No man or woman can fulfil them, their truth is their own.

I want to continue in my own self growth, finding out who I am not the roles I feel I have to play.

So to all your women out there today, Happy International Women’s Day you are all amazing, incredible people. Take this day as a celebration of who you are and all you have achieved. If there are things you want to change, start right now but more then anything remind yourself that self confidence, self acceptance and self love are not just wishy washy words they are what is needed to change the world, your world.

Love yourself, be vulnerable and find your truth.

Happy Women’s day, we rock xxx

The crazy bunch of people I get to call my friends.

“I’m tired of friendships mom” words I wasn’t expecting to hear from my 14 year old daughter. I mean giving up on friendship at 14 seriously I think I was at least in my twenties before I felt this way.

My daughter and I are similar we tend to lay our hearts on the line a lot quicker than most. We have so much hope and often find ourselves a little shell shocked from life, from people.

Our hearts can be a little battered.

Friendship is a seriously strange thing, it can bring so much joy but can also turn you upside down and inside out.

My life has been blessed by friendship but also my heart has been broken by it too.

I hate watching my daughter walk this pathway, watching her turn herself in circles.  I am shocked at how cruel we can be to each other. How words can be flung about without any reproach.

I hope that one day my daughter finds the friends she deserves, those that will cherish her tender heart.

I know I am so grateful for my friends, the people that surround me in my life today. My friends keep me sane, they drag me out of my moments of darkness, they challenge me to be the best that I can be.

I love that I get to surround myself with friends who share my passions, ones that are willing to stand up for others. Fight for disability rights, free speech, equality and to challenge and change political policies.

I am honoured that I share my life with mothers and fathers of children with special needs, parents caring for their children with compassion, empathy and kindness.

With foster parents, adoptive parents who open their homes and hearts to children in need.

Recently I have found myself building friendships with amazing women who are pro active in the body positive movement, woman who are encouraging  other woman to love their bodies and celebrate who they are.

Friendships are ever evolving, some friends are there for a lifetime some for just a moment.

Yet for however long your friendship lasts its special, it changes you, makes a mark on your life,

So today I’m taking time to celebrate my friendships and to say thank you to the crazy bunch of people I get to call my friends.

I truly love you all.  xxx

 

Friends