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.
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.