So tomorrow there is an awfully big chance that I will look a massive tatie on TV. I took the opportunity to talk about Nate being undiagnosed on ITV North East and the impact of SWAN UK. It's being shown tomorrow. And all over the country local news will feature an undiagnosed child from their area. Videos of 2 families are being shown on Daybreak, and hopefully the gorgeous Eiden makes an appearance on Daybreak, if he's well enough. Though this shows the unpredictable health of our little swans. If this doesn't raise awareness I don't know what will!
When Nate was first born I was desperate for support. And, to be frank, there wasn't any. No one could tell me about life with an undiagnosed child, though at that stage we were expecting a diagnosis, and I don't think we were even aware you could be "undiagnosed". I tried setting up an online support forum. We got a few members, but I was a bit clueless as to how to get people onboard who were in a similar situation. I didn't know how I could reach people. Then SWAN UK reactivated. A lifeline. Finally people who understood. People willing to talk openly about their experiences. New friends. I can't explain what it means to me to be able to check FB or twitter and see what everyone is up to. To read their stories, laugh and cry with them. I often feel my family are on a boat, floating, just about. On occasion that boat develops a leak, we panic, then plug the gap. Support from every source available helps plug that gap, and SWAN is one of those places.
And that, my friends, is why I dont mind looking a tatie tomorrow.
Xoxo
I'm not sure what a tatie is to be honest? Must be a north-east thing :) but I am sure you will be amazing and I look forward to seeing all the Swan's family stories, though I suspect I may cry.
ReplyDeleteI was only thinking the other day how we 'met' randomly through Bounty wasn't it? And then you set up your forum and found Swan and suggested I join. All a lifetime ago. Look at us now eh? Who'd have thought?
Well done Mrs. You, the gorgeous Natie and all the other Swan families keep me sane and stop me from drowning too. I feel genuinely proud of everyone involved today.
Group hug anyone???
Huge congratulations to all of you who agreed to be filmed for this. I managed to catch a bit of the lunch time programme but missed the rest and the ITV catch-up is not available in Ireland. A pity because it would be good to share it here too. It's fantastic that you have all found each other, I remember feeling so alone with Smiley when she was little as we didn't even have the internet until 1998 and even then there was very little on it. Great how much things have improved xx
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