Speaking out

I want Carys to tell you about Rett Syndrome, I want her to tell you more than anything, because that would mean she could talk, but she can’t. 

I want Carys to write about it, so you can read what she has to say, but she can’t. 

I want her to point at things to tell me what she needs, but she can’t. 

She can’t nod her head properly, she can’t point at letters, she can’t sign or type. 

She can’t tell me if she wants to dress up like a princess, she can’t tell me that she wants to play with dolls. She can’t form the words to tell me these things. 

Does that mean I don’t know her, or know what she’s trying to tell me? When I give her Christmas presents and she smiles and giggles, am I imagining that she’s happy with my choice? 

Carys is not even my daughter and I know what she’s saying. I know she hates when I put sport on the tv instead of Handy Manny, she doesn’t have to tell me, or write to me, she only has to look at me. 

I know she doesn’t want anymore of the banana bread I made her, because she closes her mouth and frowns at me. 

I don’t need Carys to say what she loves or hates, because she says it just as eloquently as I do, with her actions. 

When my father died, I didn’t need him to tell me he loved me, because his actions throughout my life proved that he did.

How do you communicate with someone who can’t speak, sign or write? You do it by learning from them, you do it because you don’t need ears to listen.

Just because someone can’t speak, it doesn’t mean you stop listening, it means you try harder. You spend your life putting words in their mouths, because you’re trying to associate meaning with action, because at the base, you are learning a new language. 

I learn what Carys says by the consequences of my actions and the lessons are quite easy, it just means I need to be aware. 

A word exists for this form of communication, empathy.

I will never apologise being positive, I do what I do because I’m positive we will find a cure. My message is positive because I believe you get lead by your tone. That is how I work, it’s my nature. 

Life is not just shit, and I won’t shut up and get by, I won’t because if a little girl who can’t talk and walk can muster the courage to smile and laugh to let me know me when she’s happy why can’t I be lead by that example? 

I don’t need Carys to say she loves, she tells me every time she cuddles me. 

Speaking out

Goodbye 2012

2012 has been a great year for me in many respects, one obvious reason has been my personal health. I ran my first half marathon this year, the time wasn’t that fantastic, but it it was still great considering just over a year and a half ago I struggled to walk a couple of miles without wheezing like a broken train. It wasn’t the only half marathon either and not the last, I have at least 3 lined up for this year.

We also completed the National 3 Peaks, and several other challenges along the way, some tough, some not so tough but lots of fun. All in all I walked over 1000 miles and ran nearly 600 miles according to my various GPS devices. As a result I shed weight, I’m fitter and healthier then I have been in a decade.

That’s been a byproduct of other successes, my friends and I contributed to a hefty total over £30k which was raised through Cure for Carys for RSRT UK.

Even more important, three months ago we launched our own charity, Cure Rett. Only three months, we’ve only just finished our first quarter. That’s just over 90 days, it seems like we’ve been around so much longer.

In that time my friends list has exploded, so much so that Facebook keep blocking my ability to make friends because I make them too fast or something. To quote Cartman “Screw you Facebook”.

Being part of Cure Rett has been amazing for me, not just the people I work with, Bonny, Elizabeth, Kori, James and Rob, but also the people I work for…anyone affected by Rett Syndrome. Our team is effective in the sense that we have a wide spread skill set, we operate as a collective, a team. Although we all have strong opinions on certain subjects, the will of the group directs us more then any single person. As time passes the team will get even stronger, experience and knowledge will only increase our effectiveness.

It’s easy for me, you see my work all the time, I draw the pictures. What you don’t see is the reams of effort the rest of the team put into it. You don’t see the people staying up all night wrapping cards and posting mail. Or the ones missing work to attend the meetings with corporates to talk about us, or talking at church and scout clubs, going to coffee mornings. Those people make my stuff easy to do.

I have so many new friends, who’s lives touch me daily, I see their triumphs and their struggles, I marvel at their strength and determination and try to support them in the best best way I can.

We’ve already had successes at Cure Rett, massive successes, the amount of people we’ve reached through our Facebook and Twitter engagements is staggering. The important thing to me has been the “thank you” from the families who’s lives we’ve had a real impact on. That is a real, tangible success right now, it comes from caring.

When we started Cure Rett, I always knew the “care” aspect was important, I always believed it was a vital piece of what we did. Not just vocal support, but to actually be there for parents, families and friends when they needed us, what I didn’t quite fathom was exactly how important that is. Kori has been fantastic, it’s been a process of enlightenment for the rest of us. She was always the person who saw the whole picture in this regard, supported by all the people in our care groups, who share, advise and support each other. She drives the care part of Cure Rett, she fields the calls, speaks to the families and makes sure we are on top of things.

I think the most important thing I’ve learned from her is not to let a new diagnosis rule your life. Care to Cure Facebook group is not just about Rett Syndrome, sometimes it’s all the rest of the stuff that is “almost” more important. It’s comforting to know there are people around you who know exactly what you are going through, and sometimes seeing these people laugh, and share simple things unrelated to Rett Syndrome, helps you keep perspective.

Long discussions with Paige Nues and Dr Steve Kaminsky from IRSF, confirmed how important that care aspect is, and what it means. Care is not just about Rett Syndrome, it’s about all the side effects, it’s about the emotional strain on people, the financial drain. It’s about having someone to talk to, even when you don’t need to.

We don’t want our first engagement to be “What can you do for Rett Syndrome?” We want it to be “What can we do for you?” We all want to beat this and yes we need their help, but we also want to help.

We knew that there would be some people opposed to our views, people are entitled in to their opinions and I respect that and will never interfere with their choices. Our position has always been we are happy to talk to anyone who disagrees with us, we are happy to explain our position. My only hope is that they treat us with the same courtesy and respect we afford them, that as we continue down our chosen paths that we work together on our common goals rather than belittle and bemoan our differences.

We’ve already established relationships with other charities in the UK and abroad, and we help where we can, not just in the Rett Syndrome arena, but in other arenas too. I hope that we can strengthen our ties with these charities in 2013 and continue to work together and hopefully we can form new bonds with other charities too. It’s going to be a lot of hard work, but as long as we keep focused it’ll be successful.

I want to thank all the people who’ve supported me and Cure Rett over the last year, it’s truly appreciated. I look forward to rewarding your trust with results in 2013. I hope you all have a fantastic year, and if you need anything, I’m just a message away.

Happy New Year.

Gnome out.

Goodbye 2012