Some days it’s incredibly hard to say things, to write things, emotionally you’re torn up about how to say something the right way. Today is one of those days, and the only way I know how to deal with this is through total open honesty. This is a very tough post for me.

Three little angels passed away recently and a deep emotional sadness descended on the community. A sadness that makes it very difficult to talk about this subject. I want to pay my respects, but I also want to respect the despair that these families are dealing with right now.

I know very few children who have passed away, but I do know some. I think of them often, for the girls that I do know, I make them a Profile Avatar every time I make a new set. That might seem like a strange thing to do, but I do it because I sometimes struggle to find the right words to say, or comfort, I do it because I want them to know I think about them, and their parents.

The subject is belonging.

In recent weeks I’ve been speaking to parents I didn’t know previously, who’ve lost a child to Rett syndrome prior to ever talking to me. I didn’t have the privilege to get to know them, or their daughters, until some time later.

Not only are these parents dealing with the loss of their daughters (and sons) but in some small way, they worry that they might be losing the strength and friendships provided by this community too.

For many people in this community, there is a deep solace and comfort in the bond of friendship and support that is forged through sharing your life with Rett syndrome. You find comfort in sharing things with people who understand and accept everything you are and every challenge Rett brings.

Who you have become, because of the trial of Rett syndrome, has shaped you and there is always a place for you in this community. Not just because you have us to lean on, but also because at some point, we are going to need you. Your caring, your wisdom and your strength. You belong here, you will always belong.

From me personally, whatever I make, there will always be something for you and your child. Please, don’t hesitate to ask or share anything.

Thank you to Melinda, Sara and Shayne who helped me find the right words and as always to Faith who makes sure I put them in the right order.



I’m in the room

love-stampI don’t have a child with Rett syndrome, in fact I don’t have a child. 

I have many God-children, many nieces and nephews and many children I wish were mine (some are not even children anymore – they’re just old enough to be mine). Every single one of them is so very special to me, unique and wonderful.

You’re probably wondering why this is relevant? It’s relevant because every meaningful relationship you have is based on getting to know someone, spending the time and sometimes the effort, to connect.

This is very much the case for a child with Rett syndrome. You need to spend the time, and be more patient than usual. I promise if you are, the rewards will be worthwhile.

There’s nothing difficult about treating her the same as you would everyone else. Talk to her, not at her and listen to her. When I talk to Carys’ I take her hand and hold it. I do it because then she knows that she has my attention and I give her my attention, until she acknowledges me and either smiles or looks away. I let Carys decide whether she wants my attention or not.

Why am I talking about this stuff? Well because far too many friends, who have children with Rett syndrome (or any disability for that matter) have told me how much they hate the fact that some people ignore their child or gloss over them.

One of my friends was talking to me today about the frustration of people that look after her daughter, but don’t really look after her daughter, they don’t connect. Well I’ve got some information for those people, it’s you who isn’t worth her time. A person who has so many hurdles to overcome when communicating, does not waste energy on someone who isn’t worth it. So that moment she does, that moment you connect, it’s more precious than any conversation you might ever have.

She is as precious as every other child in your life, your relationship with her should be as rewarding. Don’t assume she doesn’t get you, don’t assume when she’s not looking at you she’s not listening. She is smart. Pay her attention and respect and she will do the same to you. Pretending to look after her or care is not doing her any favours, she can see right through you and she will behave accordingly.

I always ask Bon and James if there is something Carys needs, but for her birthday and for Christmas, I like to choose her gift. I like to do it because it means I need to really think about what she might like and by doing that I really need to think about Carys.

You can’t lie to her, she spends her entire life listening and reading body language, if you’re fake, if you don’t truly make an effort, she will know and she will show you that she knows.

If you’re getting nothing, it’s because you’re giving nothing.

I’ve also had the opportunity to meet fantastic people, who surround these children with love and attention, who listen to, speak to and focus everything on her. They treat her the same as they do all the other “regular” kids, with the same adoration and/or respect. In America recently I met so many fantastic people taking part in the Disney Half Marathon, but the image that really stuck with me was of grandparents looking after their grandchild, with so much love and caring.

The reward is visible in the way she looked at them and them at her, love is mutual, love is symbiotic. Love makes us all stronger and better, it makes us better people.

So when you meet a child who has difficulty communicating, 90% of the problem is you’re not listening.

She is in the room, isn’t it time you showed up?

I’m in the room