Running for Rett
I started Running at the beginning of the first Lockdown.
Before then I hadn’t been a runner. I had tried it a handful of times but found it utterly painful and horrendous and parked it in a corner of my mind as “not my bag”.
When we suddenly all found ourselves restricted to our homes , I was overwhelmed by the feeling of being trapped. I’m sure a lot of others felt the same.
Life is pretty intense for us anyway, it’s not so much Niamh’s disabilities that create the intense-ness. It’s the process of the journey. Learning how to do life in a way that is most definitely not the norm. it brings up a lot of emotion. It’s a journey that I have come to realise will continuously push me to confront every aspect on my being. But it is intense at the moment. The newness of it means currently we are in the “Bedding in” phase. We have to get comfortable with it being really fucking uncomfortable.
So this “lockdown” situation happens, and within the feelings of trapped-ness I had an overwhelming desire to run. Move my legs as fast as I could and get out.
Ok , so I am definitely no Forrest Gump.
We live in the hilliest place possible. My first week of running was mainly me walking up hills whilst coughing up a kidney and sweating out of my eyeballs. It was absolutely awful. But for some reason something inside me wouldn’t let me stop.
After two weeks something clicked. I managed to be able to run up a hill without breaking into a walk. I use the term “run” loosely , my dogs would walk beside me whilst my legs were going at double speed on what felt like the spot.
But I finally got it. I understood why people love to run.
Since then I haven’t stopped running. It’s become quite an important part of my life.
It has become quite meditative, I can find myself in a bit of a trance as i go.
It is also a time where I can release. I’ve cried a lot whilst I’ve run. I have found myself reaching the top of a hill and sobbing.
When you are running alone you only have your thoughts, its you and you. And that can be quite intense at times. The conversations I have had with myself whilst running have been in some cases thoroughly therapeutic.
The other huge thing for me is the fact that my body is able to run. My body is able to place one foot in front of the other at “speed”.
My daughter’s body doesn’t let her do that.
I watch children of all ages freely run/walk/skip/roll/throw themselves around without a single thought. Magical.
Niamh has to work so hard to make one foot go in front of the other. It isn’t a subconscious thing. It’s a conscious effort that takes dedication and determination.
This has become something that I carry daily. In all aspects of life, but when I run, it makes me push myself that little bit harder, it keeps me going when I want to walk and it makes me go that little bit further when I want to stop.
A part of me runs because Niamh can’t.
Last year I put myself forward to Run the London Marathon For Rett UK.
The combination of Running and for this specific Charity makes my heart sing.
Rett Uk are there to support those with Rett syndrome and their families.
They are at the end of the phone or the drop of an email to help with anything you need.
When I took Niamh up to London to be diagnosed we walked into a room with a group of people sat in chairs waiting for us, each one a Rett Specialist of some kind. On the last chair sat a lady smiling at us. This lady was Becky Jenner, the head of Rett UK.
The Doctors asked a million questions and assessed Niamh. They officially diagnosed Niamh with Rett Syndrome then and there, in the room.
Becky Jenner came over and took my arm, looked me in the eyes and said “We are here for you. If you need to talk to someone , if you have any questions. We are on the end of the phone.”
At a time when the world is collapsing around you it is a glimmer of light to let you know you are not alone.
I will forever be grateful for Becky Jenner being there in that meeting.
Rett UK is a family. Full of knowledge and support. You can lean on them as much or as little as you need. They are steadfast in an incredibly complex journey.
Rett is a rare disease and that makes for quite a small community. Rett UK need as much support and light shone on them as possible, to help them be able to continue what they do for us.
Its exceptionally easy for smaller charities to be drowned out by the larger ones. Yet what they provide is just as important, if not even more so.
So I am running for them in the London marathon, on the 2nd October 2022.
I am running 26 miles to raise as much money as I possibly can for them.
Not only is October Rett Syndrome Awareness month, but the 2nd October is Niamh Birthday.
Oh how the Stars align!!
I’m going to run my socks off, for Niamh, in honour of her 7th orbit around the sun, for Rett UK, and all those who have Rett syndrome.
I am running for Rett.
