Find Your Tribe

Before you, I assumed This Wouldn’t Happen To Me.

Before you, I assumed that if it did, I would be prepared. I would know what to expect when I was expecting.

Before you, I assumed I wouldn’t cope.

After you, I assumed that we were one blood test away from closure. One blood test that would make the connection.

After you, I assumed we’d never find our place. I searched and searched, I denied and denied.

After you, I assumed my life would be full of more worries than happiness.

 “When you assume, you make an ass out of you and me”

 

But here you are, my little blonde pixie.

Rufus-49.jpg

Here’s what I know;

You haven’t caught up. You have no recognisable words. You have legs like twiglets that don’t support you well.

That one blood test took 4 years of many many tests, and it has taught us nothing more than we had already learned so far.

That one box is never enough on any form. Nor is the answer to “what’s his diagnosis?”. Or less politely “what’s wrong with him?”. That’s unlikely to get a favourable response.

More of you doesn’t work than does.

Here’s what I’ve learned;

The true definition of quality of life. You try with your whole. When you love, you love with all of you.

You have enriched us all. Not just us as a family of four, but wider family and friends.

That every goal you achieve, no matter the scale, is enough. You are enough.

That you are a pure soul with the heart of an early 90s raver: there are never enough flashing lights or tunes.

That some days are harder than I could have ever have assumed. But not because of you, but because I have to hold you down when you’re scared. I have to let people prick and poke at you. I have to quietly shush in your ear so that I don’t cry. When I see people look at you and not see what I’ve learned.

That I have a fight in me I never knew was there. How to truly advocate for another.

That sometimes there are more questions than answers. That life doesn’t always get worse even when the chips are down.

That we are not alone. We weren’t alone when Undiagnosed. We are still as supported in a community now we have some answers as we were when we had so few.

We found our tribe. Unconnected by symptoms and level of ability. Connected by a feeling of otherness, of feeling and finding our way through the unknown.

SWAN UK is more than a support group, they have a Big Ambition:

  • They want to ensure every one of the 6000 families that have a child born with a Syndrome Without a Name every year, have the support they need, when they need it.
  • They want recognition that being Undiagnosed is not always a temporary stage.
  • They want every child and young person with a Syndrome Without a Name to receive high quality coordinated care and support both in hospital and at home, regardless of diagnosis.

That Big Ambition needs financial support. As our fourth annual Undiagnosed Children’s Day approaches, please help us support it by donating any amount to:

https://www.justgiving.com/swanuk/

Text: SWAN11 (amount) to 70070

 

And if you are a family needing that support:

 

info@undiagnosed.org.uk

undiagnosed.org.uk

undiagnosed.org.uk/blog

020 7704 3141

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