A couple of months back I made a huge deal about how you should stay tuned, my blog was coming back … and how this year was going to be AWESOME because I was 40 and everything was under control.
And then… Life happened.
My girls started school, I started working, and all of a sudden life was lost under a massive cloak of ‘OH MY GOD I DON’T HAVE ENOUGH TIME FOR SLEEP LET ALONE A BLOG!’ … and so I kind of let things lapse.
Today is the 25th of October. Just another autumn day for most people.
4 years ago, at around 10am, this day took on another meaning for me.
I went to my regular checkup, and found that baby A had barely any fluid, whilst baby B was swimming in her fluid. We had suspected, then confirmed later, TTTS. This day was horrible – I had so many ultrasounds, talked to many doctors, including one that told us we should make funeral plans for our babies. The next few days were spent in shock and tears, as we came to grips with what was happening.
Today is our D-Day. Today it’s 4 years since we got the diagnosis that changed our lives, and makes us count our blessings.
I look back at everything we went through with uncertainty, and the ongoing fear of the worst, and I can’t believe that we came through with our sanity and sense of humour intact.
The constant travel to and from Leiden, the endless appointments, the sometimes brutal honesty of the situation really did take its toll on us. Then the weeks in the NICU, followed by months of therapies, as well as getting used to having 2 babies in the house… I seriously don’t know how we did it.
I know I make light of the situation at times, but please don’t ever think I don’t take what happened to us seriously. I wake up each day and am so grateful that I am in this country, that I had access to the best doctors and the researchers. I’m acutely aware of how lucky we are. Every day I see new cases and I see stories that are so similar to mine, and yet so many different and sometimes sad outcomes.
4 years has taught me patience. It’s taught me that my writing is important. It’s taught me that it’s important to share my story.
I’ve met some awesome people and met some amazing friends on this journey. I hope I’ll meet some more. I love using my voice and my writing to help people understand my journey.
So here’s to another 4 years of memories, and facing each October 25th and staring it in the eye 😉
It’s been 76 days since I posted about Fuckyou Mouse, and the battle lines are still drawn in our house.
So far the furry little fiend has bypassed every sort of trap we have bought, turned it’s nose up at all food groups, and has taken to sitting in the middle of our kitchen, cleaning itself in full view of everyone. The mouse has serious balls. (Literally, and figuratively). Continue reading The update about the mouse …
I kind of vaguebooked yesterday about what was going on and why I was at the LUMC, and also to my friends who mentioned that I didn’t sound ok with what happened yesterday – I want to reassure you I am fine. Thank you for the messages and the love xx
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. Continue reading The one about finding people who get where you’ve been …
Anyone who knows me knows my love of coffee. My best friend Michelle jokes that I know only 2 words in the morning – “Cof fee”
Today is one of those rare days where not even coffee is motivating me. 3 cups later and I’m still feeling lethargic and tired and not even ready to face the next hour, let alone grocery shopping and taking the monsters to kindy for another attempt at that drama.
So, whilst going to bed last night with a dream of writing the latest installment in the poo saga, as well as an update of all the things going on here … I won’t. I’m going to make cup number 4, and I’m going to try to wake up.