The one about finding people who get where you’ve been …

Let me be the first to say – this is by no means dissing any of my existing friends, especially those who are close to me and have been by my side throughout everything.  You are all wonderful, and I value you all.

3 years ago, I was struggling with the TTTS/TAPS diagnosis, endless doctors appointments, not knowing if my children would live or die.  I was in a country where I barely spoke the language, with only my husband knowing the full extent of what was going on, and our parents to a lesser extent.  A lot of my pain and hurt I hid from public view (this is part of who I am) and internalised.  On top of that, being part of this mysterious 10% that got a condition that not many people understand, and not being able to find good, reliable and easy to understand information about – things were stressful.  And it felt like I was alone. Very alone.  16,000 kilometres away from my family and friends, and very little emotional support.

There was the drama of going to endless ultrasounds, seeing so many doctors, uncertainty about different readings, some less than sensitive things said.  The emotion of emergency deliveries, of 6 weeks in NICU, of bringing one twin home before the other – so many things that it was so hard to share with people even in our close circle, just because it was so hard to share something so hard to understand.

They aren’t part of that 10%

Then came all the post NICU dramas, doctors, paediatricians, physiotherapists, dieticians, cardiologists, just to name a few.   Of endless appointments at hospitals and clinics, and the home visits.   It was all so isolating, because my freedom was taken. Again, our close circle was endlessly supportive and wonderful.  I am indebted to so many people for the love they gave us.  But you’re still part of this rare, unique 10%.  And even though you meet people with their own stories who can relate and give you empathy and love – you still can’t quite relate on a level of incredible intimacy that a shared story can bring.

This changed recently.  All this emotion, all the fear, all the loneliness of being part of this 10% that you never wanted to be part of anyway.   The feeling of being the only one you knew who was part of this exclusive, yet depressing club was made so much easier.  First I met Mary, the founder and driving cause behind the TTTS Foundation, who has made her story so visible and public in the name of raising awareness for TTTS.  Then through the Twin To Twin Transfusion Australia Inc page, whom I randomly messaged offering articles, I met Bec and Megan.   (Yes, I realise I’m technically not in Australia, but I follow them because they have great stuff come through). And over a placenta picture, we bonded.  (Because we all know what happens to me when placentas are in the picture!).

The best part is now I know I’m part of the 10%. That part  hasn’t changed, and will never change.  But the relief is now  – I’m not alone. There are more people out there like me. I knew this before – but now they have names.  Mary, Bec, Megan … and there’s more people to meet.  I’m not alone on this path anymore -there’s just more people to meet who have paved the path, and are clearing the bushes away so that we can raise the profile of this condition that is so widely unknown, and so that we can make the path smoother for people who are starting their journey.  The most important part is so we can make sure that these people don’t feel alone, or scared, or frightened.

This path is different for everyone, but we share one thing.  All together, we are the 10%, and we’re going to tell our stories to make sure the next person in this group does not feel alone.

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