Say What You Need To Say

 

I’ve been a bad blogger. I’ve let all the words build up in my head with no outlet for far too long. This post might be a bit rusty and overly verbose but given the topic I think that’ll be ok.

 

It’s not that I haven’t wanted to blog, it’s not that I’ve had nothing to say – I’ve just been really busy listening instead. My new job’s filling up a lot of my time…and I love it. I love my job!! How many people get to say that? For anyone who doesn’t know what I do, here’s a brief description.

 

I’m the Director of Family Support and Advocacy for a very special Charity called Cure Rett. Cure Rett was created to address 2 important needs in the Rett Syndrome community. We provide care for families dealing with a Rett Syndrome diagnosis. We also raise funds to support researchers in their efforts to develop treatments and find a cure for Rett Syndrome. This is a pretty incredible task so we have an awesome team working super hard to makes those goals a reality.  Some of the team have daughters with Rett – like me – and some of the team do it because they know and love girls with Rett. Everyone does it because they really believe they can make a difference. It makes for a pretty inspiring work environment.

 

So what does the Director of Family Support and Advocacy do? Why does there even need to be a Director of  *insert long-winded title here*? Well, mainly it’s about having someone to listen. It’s about having someone who’s been through a similar situation and can relate compassionately to what you’re going through. It’s about having someone on your side. It’s about being able to say what you need to say.

 

 

Say what you need to say

Say what you need to say 

Say what you need to say 

Say what you need to say

 

 

Why is it important to have all that? Because sometimes the words build up – the pain and frustration, the sorrow and fear, the anxiety, the guilt – the words piling on top of each other like bricks as they go unsaid for days, weeks, months…years. Clogging up in your throat until you’re choking on thousands of unspoken words.

 

Walking like a one man army

Fighting with the shadows in your head

Living out the same old moment

Knowing you’d be better off instead,

If you could only . . .

 

Say what you need to say 

Say what you need to say 

Say what you need to say 

Say what you need to say 

 

 

When you speak a fear – it losses strength. When you speak of pain – you share it’s burden. When you let the words fly out of your mouth – they stop choking you. This is especially poignant for parents of children that can’t speak. Having a child who struggles to communicate through unconventional means, who has no spoken words – like Emlyn – makes me so aware of the power of speech. It makes me appreciate everything I say, and the fact that I have this ability makes me determined to use it for good.

 

So when I have the opportunity to speak to the parents of a child with Rett Syndrome – I value each one of their words. I listen, without judgement, to their fears. I listen to what they can’t say as well, hoping that as time goes by, and they gain confidence they’ll be able to say what they need to say.

 

Say what you need to say 

Say what you need to say

Say what you need to say

Say what you need to say

 

Eleanor Roosevelt said ‘You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’

 

Curing Rett Syndrome is as much about the journey as it is about the destination. Even if the hope we have for a cure were to become a reality tomorrow, I would consider the journey only partly over. The struggle would go on. The rehabilitation would be extensive. The steps forward – though filled with joy – would be arduous. The cure wouldn’t be the end,  but it would be a brighter beginning to the second half of the road trip.

 

If this is a journey, it’s vital to pace yourself. It’s vital to stay healthy physically and emotionally as you go the distance. Saying what you need to say – when you need to say it – is a big part of staying healthy.

 

 

Have no fear for giving in

Have no fear for giving over

You know that in the end

Its better to say too much

Then never say what you need to say again

 

 

It’s not always the easiest thing in the world to pick up a phone, or write an email to someone you don’t know. It’s scary to show your vulnerabilities to a stranger – but once you’ve taken that step the stranger can become a friend. I’ve seen it happen time and time and time again. I’ve been on either side of the coin. I’ve been the one with a mouth full of words, a pounding heart and a phone clutched in my fist as I worked up the courage to make that call. I’ve poured out my heart to a stranger, worried about being judged and worried that if I started to cry I wouldn’t be able to stop. I’ve mentioned this before but it bears repeating – that stranger is now my good friend Paige, and phoning her was one of the best decisions I’ve ever made. I’ve also been on the other side of the phone, listening to the tentative first words of a broken-hearted mother. I’ve watched that mother grow in confidence as she learns, is heard, and has a chance to say what she needs to say.

 

 

Even if your hands are shaking

And your faith is broken

Even as the eyes are closing

Do it with a heart wide open

 

 

Say what you need to say 

Say what you need to say

Say what you need to say

Say what you need to say