We don’t often talk about what it’s like for us - being parents in the middle of all this. Most of our updates are about Liv, and rightly so. But the truth is, these past four years have taken an enormous toll.

It’s hard to find the words when your batteries are completely flat, when there’s never time to recharge, and when you’re constantly stretched thin just trying to hold everything together. You go through every emotion in a single day - joy, frustration, love, fear, exhaustion - and then wake up the next day to do it all again.

Yesterday was one of those days where it all hit extra hard. Liv was smiling - she was happy and shining like she so often is. And I felt completely broken (which happens a lot now). I was overwhelmed with sadness, frustration, guilt… even anger. Angry at how we always have to fight for every bit of help from the council. Angry at the way stress creeps into our relationship and causes silly arguments that wouldn’t exist under normal circumstances, although arguments do happen even in normal circumstances (but not like this), but let’s say, they are extremely elevated here. And then there’s the guilt. The feeling that I’m not doing enough, not being the parent I want to be. Not being the partner I should be for Vitalia. Words cannot describe or mend enough right now. There’s so much to say, yet never time or the energy to write it down.

And yet, through all this, Liv keeps smiling. She’s the one going through unimaginable pain and change - and still, she’s the one carrying light and joy. That contrast is hard to bear sometimes.

We’ve been running on empty for far too long. We’ve taken on so much to make life better for Liv, and hopefully for us too - but doing it mostly alone stretches everything out, and leaves very little room to breathe. That’s why we haven’t been able to update as often, or get back to messages, or even just talk with friends and family. Most of our days are spent with doctors, nurses, therapists, and officials etc. - and most importantly- training Liv as much as possible every single day of the week without interruptions while trying to do domestic things as well. What used to be simple hassle free is now a mountain to climb, it certainly does feel that way sometimes, more than less. We really miss life - seeing friends and family, going out, doing art, see life from a café, go to a restaurant…you get the point - for 4 years it haven’t been possible at all, for me (not withstanding 2 years of bloody Coronavirus circus). We miss it more than you know. I’m sure only people who has or going through similar, knows just how it is.

I wish I had some proper words of wisdom but I don’t right now.
We are getting a blog done for Liv with the help and initiative from Chris Elliott⭐️, which we hope to use as new platform for everything Liv and us, but we also haven’t had the energy to write the last things yet (sorry Chris❤️ but soon) and through there - we hope to share much more, and maybe help others going through similar and we also hope, we could maybe help back through there and dish out a little more wisdom and insight how it really is to have your world turn upside down in such a way.

Still, we hold on to hope, although it does take a dive now and then as well as we believe things will get better - we simply must, and believe this. And we are endlessly thankful for the incredible support we’ve received. We truly wouldn’t have made it this far without you.

From the bottom of our hearts -
thank you again ❤️

Love, L

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