Iām so excited to celebrate Ruby with you all on Friday at @mission.e1 for the yoga and sound event I will be holding with @sonalthakraryoga
Itās a full house! But you can still join the waitlist and please if youāre booked but can no longer make it, kindly cancel your spot so someone from the waitlist can join.
The event is in aid of @cdg.uk and here I explain why they are such an important charity. So please consider donating to the fundraiser whether you are planning to come or not.
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#cdggogreen #cdgawareness #rarediseaseawareness #rarediseaseadvocate #medicalmom
Thank you to the @thetimes and particularly @aliceazania for continuing to support me in getting the word out about PMM2-CDG through the story of Rubyās liver transplant this past summer, where I was her donor.
You can read the full thing on the website (linked in stories) or you can go old school and buy a copy out today!
The future is bright for my darling girl, and she has shown me that I can do anything when it comes to fighting for her.
Iām just getting started!
For more info on Rubyās condition, make sure you are following @projectpmm2 and @cdg.uk
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#pmm2cdg #pmm2cdg1a #congenitaldisorderofglycosylation #raredisease #rareismany
Last night, Mission came together in support of CDG-UK, the rare disease charity connected to a cause very close to our hearts.
The room was full. The energy was enormous. And together, our community raised Ā£2,000 in honour of Ruby, @itselledaniel ās daughter who lost her life to CDG this year. Mission will match that donation, bringing the total to Ā£4,000.
Thank you to everyone who came, donated, moved, held space, and helped make the night what it was. Elle and @sonalthakraryoga together led a beautiful class.
Rubyās impact reached far beyond the people who knew her personally. Last night was a reminder of what community can do when it shows up together.
Trying to find the words to describe last night.
Firstly I have to say that I could not have done it without @sonalthakraryoga@mission.e1 and @gennywilkinsonpriest and the amazingly supportive community that made last night what it was.
We raised Ā£2k and counting! All of that goes to @cdg.uk and today is #cdgawarenessday so what better time to support if youāre wondering how you can help all the other Rubies out there.
It was such an honour to lead everyone through a class, followed by Sonalās magical bowls. Towards the end, we heard a Robin singing, which I know was Ruby saying thank you ā„ļø
The fundraiser is in my bio ššš
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#cdgawareness #alchemysoundhealingandyoga #raredisease #medicalmom
So delighted to bring back park yoga āļø starting from this Sunday!
I had to take time out from this offering (one of, if not my favourite) so that I could tend to my family.
But now, although the circumstances that allow me to teach it again are sad, I am also happy to be able to share this special weekly class once more.
I would so appreciate your support in sharing about it and attending if youāre free whilst I get it back up and running šš
elledaniel.co.uk/parkyoga to book your spot (or link in bio)
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#parkyoga #northlondonyoga #islingtonyoga #highburyfields #highburyandislington
I often ask āWhere has she gone?ā, because my heart and my soul havenāt yet caught up with reason.
I asked it the other night and immediately a song came on the radio; one that I used to sing to her every night. Sheās always showing me where she is, when I am willing to see.
More about this on my @substack which you can find access to in my stories.
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#grief #griefandloss #childloss #writingcommunity #rarediseaseawareness
Iāve been inhaling @katecbowler lately because she gives me so much vocabulary for all that I am going through.
In my latest @substack Iāve written about the important distinction between joy and happiness, because I know what Iāve been feeling alongside my immense sadness isnāt quite happiness, but something deeper.
Have a read š in stories ā„ļø
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#joy #joyoverhappiness #childloss #mourning #words
Every day is a new record for the longest itās been since Iāve seen her, thank god for photos and videos.
They have a way of showing me what I couldnāt see at the time.
Sometimes this is incredibly painful, because in those final weeks I was so focused on her survival I couldnāt see all the signs that she was ready to go, which I can see in the images now.
Other times I see a photo from a very scary time, and Iām always blown away by what I see - the way she is so often caring for me (last image).
There is a misconception that caregiving is a one way street. It isnāt. Kids like Ruby have an ability to transmit calm and trust in a way that many able-bodied, neurotypical folk have forgotten. She certainly reminded me, and she still does.
Iāve written about this over on my @substack I so appreciate you reading ā„ļø
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#caregiving #caregiver #disabilityparenting #disabilityvisibility rarediseaseawarenes
I just as superstitious as the next girl, and magpies was one I seemed to live by without questioning it.
Iāve written a longer form piece as always over on @substack about one of the revelations of grief, which is that a degree of sorrow is fine and necessary. Iāve even made cautious friends with it.
I appreciate you reading it ā¤ļøā¤ļøāš„š
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#oneforsorrow #superstition #magpie #grief #childloss
If someone had told me 2.5 years ago to the day that the baby I had just birthed would no longer be here, at least not in physical form, I think I would have stopped breathing there and then.
Iāve been thinking a lot about the meaning of the last few years and the life I am navigating now. Tempting though it is to place meaning on a personās passing, I think itās more an effort to control, which is not what being with death is about.
Death is about surrendering - it is the ultimate surrender, and it has shown me all the other smaller ways I need to surrender too, often multiple times a day.
Even when things feel really heavy, I also feel hopeful, because I know now that it is in fact possible to move through life gratefully whilst carrying a lot of sadness at the same time. Iām grateful for the duality and I welcome the lessons within the complexity.
Happy 2.5 Ruby ššā¤ļø
Longer reflection on @substack
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#childloss #childlosssurvivor #grief #griefandloss
Hopefully youāve listened to episode 2 of The Mission Position with @itselledaniel .
Weāre hosting a fundraiser to raise awareness and support families navigating CDG, the condition that took Rubyās life in January.
Join us. Itās free. Book via the workshops link in our bio. If you canāt make it but would still like to support, you can donate to CDG UK via the link in our bio.
Mission will match every pound donated.
