Why #WorldPrematurityDay Matters if you have EDS

I’d like to introduce you to TinyPants. Because once upon a time she was tiny.

Way back when I had no idea what EDS was and all I knew was that my back hurt and my pelvis wobbled way out of shape, a tiny person decided that they’d had enough time cooking and made a rather dramatic entrance. At 35 weeks cooked, it took 52 hours of screaming labour, a head stuck in my pelvis, attempting to knock myself out with ineffectual gas & air, an epidural that didn’t work and an ER style c-section, and a Beanpole was born.

16 months later, in a less dramatic fashion, but equally unexpected a TinyPants arrived. She was grey and slimy and 32 weeks cooked to the day. She gave an almighty yell then promptly stopped breathing. If I’m honest, it probably would’ve been quite useful to know that EDS comes with early membrane rupture. Oh, and a resistance to all things local anesthetic (that would’ve really helped).

Luckily for us, the medical staff whisked her off and put her in a box. We don’t have many early photos of her. I guess we were just too caught up in having two babies and didn’t want to jinx anything if we took photos? I don’t know. It was all a bit of a blur of tiny nappies, chapped nipple and milk donations.

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After coming home, the apnea continued and my tiny wriggling frog wore a remote control to warn us that she’d stopped breathing for a further 6 months. We were warned when my waters broke suddenly one day that she wouldn’t be able to breastfeed, that she may have health issues, that her sight may be affected & that she would be developmentally delayed.

They clearly hadn’t bargained on my daughter.

By 9 months she was trying to walk. And was still had a breast obsession to rival her father’s.

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Her vocabulary was perfect for her birth age, but what was most remarkable was (is) her ability to wrap everyone around her little finger with head tilt and a smile or a squeezy hug.

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As she got older, it was clear that she was leaving academia to her sister, even though she was perfectly capable. Her love of all things arty started early with painting her sibling, colouring everything (including my walls) and drawing elaborate art on her own body by sneaking felt tips under her bed. She also taught me that gender is fluid – there’s nothing wrong with wearing a tutu whilst also weilding a sword and demanding curly hair. Then later asking for it all chopped off to look like Willy Wonka (actually, it really worked).

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As she got older, she proved everyone wrong by being strong, insanely healthy, and head strong  (with 20-20 vision).

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So, a decade ago a tiny little frog emerged from my belly and has not stopped wriggling, shouting, and generally letting the world know that she’s going to kick it’s arse since.

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Good luck world. I’m going to have to unleash her on you soon!

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