Please scroll to the bottom and play the incredible Fink song Yesterday Was Hard On All Of Us. The lyrics are written in italics throughout the post. UK recording artist Fink and the Royal Concertgebouw Orchestra collaborate for a stunning one-off performance in Amsterdam’s prestigious Concertgebouw to a sold out crowd. Conducted by Ivan Meylemans and arranged by Jules Buckley. My favorite band, one of my favorite songs and an Orchestra of unparalleled excellence.
Where do we go from here
Where do we go
Is it real or just something we think we know
It was May 23rd 2008 that my daughter Emlyn was diagnosed with Rett Syndrome. Emlyn is almost 7 now, but on the day we learned she wouldn’t likely ever walk, or talk, she was only 2 years old. That was the day I learned she would suffer from epilepsy, scoliosis, and breathing irregularities. She was 2 when the future I envisioned for our family exploded and shredded our family with shrapnel. It was the worst day of my life…May23rd 2008.
Where are we going now
Where do we go
Cos if it’s the same as yesterday you know I’m out
Just so you know
When I woke up the next morning – just for a minute – my shattered mind erased the truth. It was a nice minute. I thought about little things. Like how I needed to get downstairs and put the coffee on. Like how the birds were singing outside my window. I thought about letting our dog Maggie out, and getting Emlyn up….and then the world fell apart again. I could barely catch my breath, and I can’t say for certain…but I think I groaned
In the beginning it took all my effort just to get through the day. A pattern emerged. Wake up and for those few precious seconds Rett Syndrome didn’t exist. The cruelty of truth reasserting itself baffled me…how could it keep hurting with that fresh sharp pain?
Because
Because
Our paths, they crossed
Yesterday was hard on all of us
On all of us
Learning about Rett Syndrome was a trial & error of internet horror. It all sounded so grim! I didn’t know what to believe or who to talk to. The professionals didn’t appear to have the answers, some of them hadn’t even heard of Rett. Those were hard days, for all of us. Ryan, Grace and Cam – our older children – were confused but didn’t want to ask questions when they had a good idea they wouldn’t like the answers. A diagnosis of Rett Syndrome is hard on everyone. Parents, grandparents, brothers, sisters, aunts, uncles, friends – the grief is universal.
Who can we trust from here
Who can we trust
The feelings of loneliness that settle in after awhile….man, they’re a killer. It’s isolating when people don’t know what to say, so they say nothing. It’s hard to comfort others when they’re trying to comfort you and you can just feel how uncomfortable they are. It’s exhausting putting one foot in front of the other. It’s scary, and dreadful and overwhelming. Everything seems off kilter – I stopped trusting even my own instincts for a while – and you sort of scramble around trying to find your balance.
Where do we go from here
Where do we go
How do we get out
How do we move around with all these eyes on us
Tell you what, you go first
Almost like it’s kind of rehearsed but
It’s not, no
For me the turning point came when I reached out and asked for help. It was one of the most courageous things I’ve ever done. Some of my readers know me well, but some of you don’t – so I’m going to share a little secret – I kinda like being in control of myself. I’m not a control freak….well, not by my definition of control freak….I can let other people do what they need to do without interference, but I like to think I’m fully capable of doing what I need to do without assistance. I’m a recovering self-sufficiency freak.
Anyway, asking for help wasn’t my default setting. But I am soooo glad I did. I called Paige Nues – Director of Family Support at IRSF – and we spent hours on the phone. Hours that made the most profound impact on everything that’s come since. Hours that gave me back my confidence as a mother. Hours that gave me a burning and sustained curiosity about research. Hours that surprised me…Paige laughed, she sounded happy, she sounded…well, normal. I thought normal was off the table, but Paige sounded like her life was still full of joy and fun. She sounded like me, me before Rett.
Paige gave me hope.
And she gave me the desire to pay it forward. It’s been over 4 years since the 23rd of May 2008. Those have been productive years.
Last month saw the launch of Cure Rett, a new charity with a very cool mission. From Care to Cure. From the diagnosis onwards. The Care mission of Cure Rett is to help families. To help them in the early days as they come to terms with a new diagnosis. To help them in practical ways if they want to become more active in fundraising and advocacy. To help them reach out and connect with others in the Rett Community. To enable them to play a part in directing funds to the research that will hopefully Cure Rett. I feel extremely honored to be a part of that. I hope I can give someone a small part of what Paige gave me.
Because
Because
Our paths, they crossed
Yesterday was hard on all of us
On all of us
So, why am I telling you all of this? Because I’d like you to join us.
I’d like you to visit our website, and check out our infographics created by the amazing Elizabeth Halford of Gracie May Photography.
I hope you’ll visit us on Facebook and click ‘Like’ & then ask for a Cure Rett avatar like this….we’ll make it for you, whatever your name is.
And I’d be delighted if you would follow us on Twitter.
Because
Because
Our paths, they crossed
Yesterday was hard on all of us
On all of us
