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.
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?