Stop the world…sometimes I need a break

Today I read two posts on Facebook.

One about facebook connecting parents, like me.

The other about the loss of a child.

When I say, ’ parents like me ‘, I’m referring to parents who’s children not only have disabilities, not only a syndrome but parents who know, that there is no cure, no special medicine, no therapies to help our children live as productive adults in our world. We feel blessed if our children reach 20, even then their challenges become so difficult that we, the parents, need to make decisions, decisions no parent ever wants to make….we must choose between quality of life and quantity of life. It is a decision, I know awaits me.
Without facebook, without ‘meeting’ parents of these children, I believe , despite the massive support my friends have been, I believe I would be on medication myself, I would have no one. No one to talk with me, via instant messenger( God bless it!). No one who is with me on this path. No one who knows the depth of heartache I feel when my son forgets a word. No one who has sadly been there, lived through it and is still helping parents go through it. These parents are my kin, they are my friends. I’ve only ever met three sets of these parents. They are far and few between.
When we met ‘our kind’ of parents, we drink, laugh and have fun like any other friends, but there is a bond there, an understanding. If I mention Ethan having a limp, they know my mind has jumped to anesthetic~ there is a certain comfort in that, which I simply cannot put into words.
So yes, Facebook to ‘parents like me ’ is far , far more than social networking site that takes us away from the mundane day to day of life…to ’ parents like me ’ it is indeed a life line .

The second post, a friend, who is a mammy to three beautiful children, all of which have type three of my sons condition. She recently buried her second child. She posted a beautiful poem in honour of her son. I had wished to be near her, so many times over the past few weeks, but Facebook is the closet I’ll ever get to her and her family.
The MPS community is a tight one. We know. We know things parents don’t want to know. We know things our everyday family and friends don’t want to know or talk about. We don’t want to be ‘that ’ friend, ’ that’ family member who is always going on about their children and how hard it is~ christ, does anybody?!

Today, underneath her beautiful poem, a ‘friend’ of hers, posted the following comment~ Stop.Just stop. Stop talking about your son. Stop.~

Imagine being that mammy. Imagine having a ‘friend’ like that.

The post exploded with MPS parents weighing in. They were there, from all corners of the world, at all times of the day and night, appalled at the callous comment made by this ‘friend’.

My heart broke as I witnessed the inhuman, heartless comment made to a grieving mother.

Is this our world now, if you don’t live with it, you loose all compassion, empathy and sympathy for those who have no choice but to live it?

The world just got darker for me in that moment, and christ, it was dark before that.


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