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?

 

 

 

 

Know your own value.

Dear teenagers,

There is nothing more than I hate to see then you posting photographs on social media asking for likes. Your need to get reassurance from others. The value you place in the number you receive really worries me.

facebook like button

You cannot allow your self worth to be based on a number.

The world of social media is a fickle place someone may not like your photo for reasons that are way beyond you, but the fact is, that is irrelevant.

You need to know your own worth!

To know how truly amazing you are.

Post as many photos as you want but love them yourself.

Know that what you see is a beautiful, handsome incredible individual.

Know that each and every one of you is an amazing unique person.

That your life is worth so much more than a like or twenty, in fact no number can hold your value.

You are priceless.

Go ask your parents for a number that holds your value, they couldn’t give you one as their love for you infinite.

Go ask your best friends to number your friendship, believe me when I say true friendship  is beyond any number.

This world is so quick to put a number on things, from the latest iPhone to designer clothes.

This is not true value.

Your smile, the twinkle in your eyes, the sound of your laughter this is what people will remember.

A new dress will become last seasons fashion, a kind giving heart will be cherished forever.

Hey I’m not saying don’t share that photo of you in your new top, coat, jeans hey we all do, personally a good make up day is always a share for me.

It’s not about not posting, its about why you post.

Post because you feel good, post because you are happy with the way you look, post because you just want to.

Don’t hold on for likes, know you are liked and loved.

The number does not hold your value because it cannot,

Because simply you are priceless. 

Priceless