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.

Is truth too much to ask ?

It’s beginning to feel in the world today that whatever you speak up about you will be criticised. A world where we are supposed to be more educated, more aware seems a lot more narrow minded than before. The live and let live attitude is lost under the intense noise of keyboard shouters and newsfeed want to be’s. Sectors of the media saying what it wants without fact checking, it seems asking forgiveness is better than permission.

I truly love that marginalised communities are being heard, not finding their voices, they have always had them but actually being heard. Yet the anger and hate directed towards them is hard to watch ( I’m privileged I know). 

I know it’s wishful thinking that the core of who we are is what will be celebrated, that our differences are special, but our hearts, our souls are ultimately the same, one source, one love.

Yet with this wide reaching social media the world seems louder and crueller. The hate that was hidden in shadows is now out in the light, radicalism is greater than ever. Telling people who they should be, what they should believe and how they should look is now classified as freedom of speech, our right. Do we really have a right to be cruel to be destructive, to harm others?  Morally and it should be legally not. We don’t have the right to destroy another, to mock, to insult, too troll.

From princes to not princesses the world has an opinion yet under the noise their are people. People that hurt, people that cry, people that die due to the words shared openly and cruelly. 

I follow the criteria of “don’t write what you would not say to someone’s face” it’s simple but it’s true. Would I impact another with my words if they stood there in front of me, would I mock their child, would I slander their reputation? Would I openly insult their lives, be racist, be sexist, be cruel if their eyes could see mine?

Let’s be honest I hope I wouldn’t do any of these things anyway but you get the point.

Social media and the news seem to be full of opinions but no facts. It’s crazy that our newspaper articles have not fact checking their sources. Is this true, did this happen, was this the reason? When I studied journalism at college I was told “do not speculate” I wonder if today’s course’s state “write the most explosive story ever and fact check it later”. The amount of lives I’ve seen ruined by guilty by public persecution and the media only for the criminal trial to prove innocent. 

Lives ruined by headlines often not true.

Yet why is this still allowed, why do we still read the headlines, why do we still click the links?

What worries me is those being lost in the noise, those whose voices that should be heard . Those making a difference in the lives of others, those in need of help. Lost in the noise of ego, hate and more ego.

How do you change the overflowing tirade of misinformation and false opinion? Should we close ourselves off from the internet, stop writing, stop reading? 

I don’t think so,  I just feel a two strand approach is needed. Firstly the law does need to change, anyone causing harm, being abusive online should follow the same rules as in real life. If something abused you in real life they would be prosecuted so being behind a keyboard does not make you less destroying. 

Secondly I think as a society we need to be holding our media to account. Headlines should be truth not fiction, the law should be holding those in power accountable. I want to read my news and read an unbiased evidenced based truth not speculation.

I just really want change, social media especially has become such a big part of peoples lives, yet if we are going to allow the words of others to impact our perceptions please let those words be truth. 

Is this too much to ask? 

Not hiding my boy away

A child breaks their leg, Mom shares image on social media and the comments that follow are full of “bless them” “oh little brave one”. A special needs parent shared their reality and the response is so very different.

Regardless of how people have viewed the coverage regarding Alfie Evans I am getting truly tired of hearing “you shouldn’t show photos like that” “who wants to see a sick child”.

It’s comments like this that makes us special needs parents feel we have to hide in the shadows. It’s ok to share a photo of a normal (I hate that description) healthy child with a broken leg but how dare you share a complex kid?

Comments like “it’s made me feel uncomfortable” are driving me crazy. I’m sorry my life is making you uncomfortable, I apologize that my child’s feeding tube makes you look away. That you feel sad that you have to think of children in situations like this.

Jog on,

Our children are gifts, if we want to share and journal every step of their journey we have the absolute right to. If we want to share our fear, pain and worries we will.

It’s comments like those written above that left me struggling alone with Livvy. It’s attitudes like this that stopped me reaching out to be supported.

It’s not happening again, I will not hide my beautiful boy from those that are sharing our journey with me. I will not allow myself to feel isolated again. As far as I’m concerned if you don’t like what you see or read, don’t follow.

I am so thankful for the community of parents whose children have complex needs here on social media. For the wide-awake club who keep me company in the endless early hours. Those that have been there that can advise or encourage me and for those that just get it.

Social media has brought the world closer, its connections have brought me friends I love dearly that I have yet to touch or hug, but they have pulled up when I’ve been feeling down, wrapping me up in encouragement and love.

Yes, social media has it low points but the community of parents with children with special needs have been a lifeline to me. I love seeing photos of their beautiful children, love sharing in their moments both good and the hard. Love being given the opportunity to support and encourage them as they do me.

So, will I let those that “feel uncomfortable” stop me from being part of this amazing community, no chance I love my people.

Will I hide my child from the world, no way he is too blooming gorgeous?