Story of my life

and through it all...
and through it all…

I’ve been writing blogs for some time now, but this is possibly the hardest one I’ve had to write. I want to give you a small glimpse into what it is like to live with Rett syndrome.

Rett syndrome is a complex genetic disorder that affects the connections in a person’s brain, robbing them of their ability to walk, talk or use their hands in any meaningful way.

Rett is a domino effect that plays havoc with so many things; the symptom list is just heavy reading and seems to go on forever. Locked inside her body with no traditional means to communicate, she is literally a hostage to her DNA.

Rett syndrome is something that will profoundly affect your life and the lives of every one around you.

Right now Rett syndrome is a life sentence for him or her.

But for everyone else, the truth about living with someone with Rett syndrome means that nothing is easy any more. All the things you expect your child to grow up and do are not even on your list any more. A simple thing like tying a shoelace, is replaced by lacing them into ankle supports.

I’m not telling you this for sympathy, I’m telling you this for understanding.

The first thing a Rett parent does when they wake up is think about their child and the last thing they do when they go to bed is worry about them. Not “normal” parental worries, rather things like what happens if she chokes in her sleep or has a seizure, how does she call me? They then spend the day worrying about everything in between. There is no respite from the worry, it’s a constant, consuming companion.

For parents of children with Rett syndrome, life passes you by as you care for and share your child’s life, fighting for tiny wins. Those small quick calls to friends, those minutes where you could just dash out to the shop, they’re gone. Not temporarily as you wait for your child to get to an age so you can do it again. They are gone. You can’t just dash out anymore, and chances are you won’t be able to in future, it’s just not an easy thing to do. There is no dashing, there is only meticulous planning and loads of packing. Making sure you have medication, food, supports, wheelchairs and various other every day necessities.

Rett syndrome is a paradox of fragility and toughness, for the people affected by it, it means frustration, pain, and the need for constant care and supervision. The problem here is that as we learn more about it, so we discover that the mental abilities of the people affected by Rett have been severely underestimated.

Walk a mile in my shoes...
Walk a mile in my shoes…

I can tell you that despite all these horrible things they have to deal with, in spite of all the obstacles that Rett syndrome throws in their way, these people are happy. They’ve learned patience that comes with being locked in. They live, love and laugh, they inspire people, bring out the best in people. They make us cry, laugh, live and love. They teach us to take joy in little things, to take pride in small details.

There’s been rapid progress in the field of Rett syndrome since we discovered the gene responsible for it; a few clinical trials are on the way and many more hopes are in development. The only thing that stands between this life sentence and setting them free, is money.

That is the simple fact.

Everything we do on the awareness front is aimed at raising enough money to make a meaningful impact on the progress to treatment and a cure.

There is something you can do for people and families who live with Rett syndrome, you could be just a little more patient, because they need their friends more than ever. It’s not that they forget you, or don’t think about you, it’s that all those precious seconds get stolen and before they know it, it’s the end of the day and they’re just praying that when they wake up tomorrow everything went okay.

This album for this blog is going to be different, it’s slow progression of images over the next few days. I want to take the time and care to explain this, what it means. From the simple space these things occupy, to the knowledge that extends with it.

My friend Mimi spoke about being a Rettologist, I hope to show you how in pictures.

If you want to be part of this story, send me your pictures.

The picture album is here : Story of my life

Story of my life

Say Yes

I fight for Avery.
Avery’s Army will be taking on the Spartan race soon. Every person that pulls a Spartan shirt over their head is making a statement that they are there to fight for her.

It’s strangely coincidental that a discussion with Kelly a couple of weeks ago has led us both to blog about same event, but from a different perspective. Kelly was telling me how she hated feeling helpless and having all her wonderful family and friends coming around to help her for the simplest things was so frustrating.

I told her we need it, we need her to ask for help, because that’s how we can give.

I want to talk about saying yes, and the art of giving.

Giving is possibly the most wonderful thing we can do as people, not just to give for things we are invested in, and not just to give money. Just to give. I believe that giving is one of the things that makes us human.

When we give, we chose to open ourselves to someone and say, you matter, or your child matters, or your cause matters. It’s a very special thing. It’s special because when you give to others, you give to yourself too. You can’t help but feel like a better person for making someone else feel better. We are designed like that, for whatever the reason, giving stimulates our satisfaction cells.

When someone wants to give, let them, say yes. Whatever they can give, let them be a part of this.

I didn’t start Army of Us with a plan, I started Army of Us because I needed a place to do the things I love doing, like Birthday Cards and Profile campaigns. As it developed, it became apparent that there was something else the Army of Us could provide. How to enable families.

What do I mean by that?

Friends and families take some time coming to terms with the diagnosis too, for many of us, we take even longer, as we are not immersed in Rett syndrome from the outset. I know that this is not about us, this is about you, but in many cases we need you to tell us how we can support you.

What we can do is take care of the physical, the practical. We just need jobs, but it’s also all new to us too. There is no manual on how to be a good friend to someone who has received a Rett diagnosis.

When one of us asks you if you need help, we need you to say yes. We need you to say yes because we don’t necessarily understand how to help. So when there is something obvious we can do, this allows us to start supporting you.

With that tiny action of saying yes, it includes us, and we get to learn more about Rett syndrome and what we can do to help.

So if we say, can I lift that, can I move that, can I come around for tea, can I bring tea. Say yes. Your friends want to help, they want to support you. They want to surround you, and show you how much you are loved, they just need to know how.

“Elianna’s diagnosis became the ‘elephant in the room’. Nobody really wanted to ask how things were, not because they didn’t care, because they thought they couldn’t do anything to make it better.” – Anna

So how does that relate back to the Army of Us?

The Army of Us has grown to strengthen your circle of support. We want to give you ideas, plans and even goodies that allow you and your friends to do something about this. We want to enable your circle. To enable them to raise awareness, raise money, create a unified team spirit. We want to do this by showing you what other people have done, and listening to your ideas.

We want to try create a genuine grassroots movement that is centred around the families first, to enable their support system by giving friends and families the tools to help. To be part of the story, until they get to the point where they understand the story (that sounds patronising, but I’m speaking from experience here, it took me a long time to understand Rett syndrome). To be an activist organisation, that does things, rather than expects things.

We’re having a lot of successes too, we already have many tees, pins and ideas in the pipeline. In fact one family has sold 115 Shirts already (here’s looking at you Kristy). With the next big order going through, we will have been responsible for over 800 shirts since we started (not very long ago at all).

We don’t print them all ourselves, if you look in our tee folder we only do one design right now (available soon – we are just setting up a US shop). We create designs for families who take them to their own local printers. These things we design are your things, they are your designs, they belong to you.

You can see some of the community tees here in this album. They are only some of the designs, there are more out there and more coming to the album over the next few weeks.

We want to support your story, and let me make this clear, it is always your story. This is not about us, it’s about you.  That’s how we believe we can enable families, by giving your networks access to things they can do. Right now.

We don’t accept payment for the things we make, designs are free. The physical things are generally at cost. We are not building this to make money, we are doing it because this is what we can give.

That brings me full circle.

Say yes.

To see the album for “fight for her” click here

I want to quote Anna in full because I think she says exactly what we are hoping to be.

“You are so right about what you said regarding enabling families and communities to support these girls. Friends and families feel helpless, especially with a rare disease diagnosis…what are they supposed to do? Nobody knows anyone that can relate, none of my friends and family came flying over with stellar advice on how to deal…they couldn’t.

Elianna’s diagnosis became the “elephant in the room”. Nobody really wanted to ask how things were, not because they didn’t care, because they thought they couldn’t do anything to make it better. Then you designed a Team Elianna shirt. It gave a lot of our loved ones, friends, and family members an answer to their loss. They finally had a role to play, a way to support Elianna and her family without having to have all the answers.

So many people came forward to join the team, help us spread the word. It really does make us feel encircled and held up at times when we need it the most. They have been empowered to help and now I have friends that want to manage fund raisers, hold benefit dinners, donate silent auction items, etc. Sometimes it just takes a little nudge :)“

I say yes, I say yes to fight, I say yes to fight for her. I fight for her to get her stronger.


I fight for her
Special edition Spartan “I fight for HER” Tees for Avery’s Army.
Say Yes