Real life Rett


#realliferett was born in a moment of deep frustration, a ‘screw you all, this is what I have to deal with’ kind of moment in the midst of yet another hurdle in the life that is Rett Syndrome.

I was lying next to Lily in her ‘sick bed’ that we set up in our bedroom for times such as this one, when Lily is unwell and we need to have her close, to hear her breathe, to comfort her, to make sure she gets through the night.

It was late afternoon and still in my pajamas, hair unwashed, black circles under my eyes, Lily crying in her bed beside me, I began scrolling through Facebook and Instagram to escape for a moment, see what the other half are doing. Every photo depicted a friend living a carefree, healthy, happy and footloose existence. I felt so alone in that room, in that moment.

It got me thinking. Why, as a community, do we feel the need to portray our lives as though they were perfect and without flaw? Why do I, more importantly? Why am I sparing my friends from the reality that is Rett Syndrome?

The answers are deep and probably universal for most of us as a general rule, but for me as a Rett parent, they are deeply ingrained in my psyche and they are things that are confronting and controversial to talk about, even to others in the same position.

That in itself is unusual because we have this amazing kinship as Rett parents. We get each other. We can talk about almost anything with the assurance that someone else, somewhere in the social media world of Rett Syndrome, will have the same question or the same thoughts.

But the things we don’t talk about to anyone, not even to each other are the feelings of shame and guilt associated with having a disabled child. Sometimes we feel brave enough to let down our guard and express our anger and resentment, but shame and guilt are taboo feelings in anyone’s world.

The guilt is probably easy to explain. It’s just very, very difficult to talk about. It’s a painful and raw place I don’t like to go to often. But the shame, for me, stems from a fear of being judged or my daughter being judged.

Sometimes, it is more than I can bear.

Call it ego if you will, unfortunately I do have a big one in spite of trying very hard to channel the principles of Eckhart Tolle, but mostly it comes from the despicable way in which our culture has come to treat people with disability as second class citizens. As less than, as somehow, having missed out on something the rest us were blessed with.

The judgement placed on not only people with disability, but the stigmatism attached to being a parent or a carer of child with disability is a hard mould to break.

It’s something that as a community, us Rett parents are trying very hard to break. We want the world to see how exceptionally beautiful our children are inside and out. We refuse to have our children be seen as one of those people you don’t want your typical child to stare at because they look different or because they dribble, or scream at the most inappropriate times, or because they make funny noises, or they invade your personal space and make you feel uncomfortable or they eat with their mouth open and spill their food all over themselves, or they fart and burp or even relieve themselves as they need to.

Society doesn’t want to ‘see’ that. Society wants everyone to be perfect and so, that is what we give them.

October is Rett Syndrome awareness month and it is a time when Rett Syndrome parents feel they can freely express their frustrations and challenges without being too much of a downer to all our friends and family, but the truth is, this is a bloody tough life this Rett life. Don’t get me wrong, I consider myself blessed and the luckiest mother in the world to have my precious girl. But it’s tough, both emotionally and physically.

The hashtag #realliferett gives us permission to be real anytime of the year, not just for October. To dispel the belief that we do this job with ease, that we were born for it. It allows us to give a real and true account of the confronting things that our daughters have to live with and what we as parents are challenged with every single day.

Being ‘real’ can be our contribution to dispelling the myths and relieving the discrimination somewhat. After all, each and every one of us is only a ‘moment gone wrong’ away from having a disabled child or being disabled ourselves.

Let’s be real and embrace all human beings. Let’s show the world not only the good, but the bad and the ugly as well!



We’ve created a set of Profilomatic frames for #realliferett, you can find them here.

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