In Liverpool where I grew up the phrase “I am on the edge” is much bandied about. It is a brilliant statement that has evolved to comedy status over the years.
- The chippy was shut and I was starving. Then he couldn’t decide on Maccies or Chinese. I was on the bloody edge.
- There were 15 kids at that party on Sunday. The noise. I swear to God. I was on the edge. The edge! I tell you.
You kind of get the point. It sums up all the day-to-day stress that comes with having children and busy lives. How you often find yourself on the brink of becoming a mad ranting person. Most of us are not really on the edge though. We’ve had moments for sure. Life deals us all blows and then some, yet we largely bounce back.
For lots of families though ‘on the edge’ is a living reality. And this includes many members of SWAN UK, a charity that supports families with undiagnosed genetic conditions. In this world ambulance rides and acute emergency admissions are par for the course, as is trying to build a life around children who are not only life threatened but life limited.
I’ve been a member of SWAN UK for three years. I wish I’d found it earlier during the dark days of testing, but I am forever grateful I have it now and the many new friends it has gifted. Without this group I would be alone in this. I’d have to wait for consultant appointments to get the answers to my many, many queries. My fears would not be squashed in a minute, but would build. Who knows what road that would take me down.
It is for this reason that I was elated (gobsmacked and honoured) to be shortlisted last week by judge Miriam González Durántez as Best Campaigner in the Mumsnet inaugural blogging awards for my post for the charity’s Undiagnosed Children’s Awareness Day.
SWAN UK is not a huge charity. It doesn’t have piles of cash, nor can it shower us with equipment and resources (as much as they would like to). Instead it offers lots of useful information and a place to chat in private (via Facebook) with people whose children are facing similar battles to your own. A welcoming room you can enter when you need to, put your feet up with a brew, and ask all the questions that have been keeping you awake at night.
The compassion and generosity members show when the sh*t hits the fan for another in the group never fails to take my breath away. My good friend had awful news recently and the group came together like a warm blanket leaving her messages, littering the board with candles in honor of a life that flickered all too briefly.
But listen, don’t get me wrong. This is not just a place of doom and gloom. It is a group that bubbles with hope, small achievements and huge triumphs. There are also laughs aplenty. Last year I was trying to encourage my sister to come on a night out with some of the mums. Her face said it all. Really! A night out with your support group. Fun times. But these people know how to party. With kids like ours getting out OUT is a military operation. They do not squander these nights away. She ate her words and has been asking ever since when the next ‘women on the edge night out’ is.*
But many families do not even know SWAN UK exists. They do not realise that they can come and lay down their bruised and battered souls with us for a while. Rest up. We will share the load until the point when the load doesn’t feel so heavy anymore. There will be a point when they don’t need us so much, but they are forever welcome to pop back in for visits. This is the one place you can brain dump and go. We’ve got you.
But first we need to find you.
On Undiagnosed Children’s Awareness Day members come together as one to try and make ourselves heard above the din of people’s lives. To try and reach the people that need us. This year how we yelled. The wonderful SWAN UK bloggers poured out their tales in some of the most brilliant writing I have ever seen, hoping to resonate with other families going through similar things. Members spammed their Facebook feeds and plagued local newspapers. A few brave souls spoke on the radio and TV. The creation of a post for the first ever undiagnosed children’s nurse was the cherry on the cake.
It was immense. I loved it. And more importantly it worked. We got a fresh intake of members. New friends.
Mumsnet have been amazing supporters of SWAN UK and named them as one of four charities in their Giving Week this year. So to help us raise the profile again with this blogging nomination is incredible. We can’t thank them enough.
I am not the only SWAN UK blogger though. There is a group of amazing mums who by sharing their most personal stories, giving away pieces of their hearts that are still healing, keep the campaign and awareness going every single day. If they reach just ONE more person and pull them out of a deepening hole, then that is a good day’s work.
You can read all the marvellous Undiagnosed Children’s Day posts below.
If you get a minute check out the two other amazing finalists in the category. Two women who have been on the edge and jumped back. There is the wonderful Hayley Goleniowska, founder of Downs Side Up, which was one of the first blogs I ever read when my son was born. She offers a wealth of information and support to parents facing lives they never expected.
Then there is the awesome Cash Carraway from The Comeback Mum, whose writing makes me want to cheer and cry in equal measure (and then buy a new dress), who wrote about her experience of getting kicked out at 16 and being expected to survive. If you do nothing else today read her Seriously Awkward campaign piece for The Children’s Society.
Standing next to these two great women, I don’t feel like much of a campaigner. But the nomination is not really about me, it is about the children at the heart of SWAN UK. And it is about the exhausted mums and dads trying their best in the most challenging of circumstances.
On the edge is a terrifying place to stand alone. No one should have to do that.
*I do of course mean men and women on the edge – but that sounds a bit rude. Soz lads
More information on the Mumsnet blogging awards can be found here.
Undiagnosed Day by the SWAN UK bloggers
- Definitely not the Waltons – What a difference a day makes
- The Long Chain – The Wobble
- Dylan’s Story – When you wish upon a star
- The inclusive home – Monkeys and swans
- Orange this way – Undiagnosed day is not just for us
- Little mamma said – Undiagnosed
- Mumsnet guest post – Emma Murphy
- Firefly Garden guest post – As Alex grows up
- SWAN guest post – Jo Burt
- Things are never as they seem – How we feel about being undiagnosed
- Reben’s journey as a SWAN – Years flying past
- SWAN songs – The invisible child
- Gingerbread and Sunshine – White wine and patchwork
- Special Needs Jungle guest post – Sarah Ricketts