Liv's Blog

Liv's Blog

Liv's blog is a compilation of posts from the GoFundMe site, created initially by Jess Cope - a long time friend and collaborator with Lasse Hoile during their work on projects for composer and musician, Steven Wilson. Many of the posts will contain moving contributions from Lasse, Vitalia and their colleagues including video clips and photography of Liv's brave progess through her treatments and life at home with her parents. We hope you will learn from their experiences and help to spread and gather support for Liv and other children in similar situations.


A little update from here
A little update from here

A little update from here

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

Bit of week, but a little ride into something new.
Bit of week, but a little ride into something new.

Bit of week, but a little ride into something new.

This past week has been a bit of a tough one.

The final stages of Liv’s new therapy space are taking shape - and while we’re so close to the finish line, it’s also taken a lot out of us. On top of everything else, we’ve had to remove our old bathtub to make space for a roll-in bath, so we can safely and comfortably bathe Liv without risking our backs. Until it’s installed, we’re using a mobile shower/toilet unit out in the garage, and… well, let’s just say it hasn’t made life easier. But we keep reminding ourselves why we’re doing this - and that the end result will be worth it.

Liv has also had her latest round of blood tests. Her phosphate levels were a bit too high, so we’ve started giving her something to help reduce that in her food. She also received her last vaccine and a shot of epo, which means that medically, she’s now ready for a kidney transplant. The only thing holding her back is her weight - it hasn’t been gaining as much as the doctors would like, but we’re hopeful that she’ll reach her goal in time. She’s still having some stomach trouble and hasn’t been sleeping as well as usual. We’re hoping to get an endoscopy soon to finally get some answers - this has been ongoing for years now, and we just want her to feel better.

But in the middle of all this, we had a truly beautiful moment: Liv got to ride a horse for the first time ❤️ It’s something we’ve been hoping to do for a long while - recommended by her physiotherapist to help her balance and cognitive abilities. Though she was tired, she absolutely loved the experience. Being outside, doing something new - it meant the world to us all. And when the weather is nice, we’ve been having little picnics in the garden - something simple that brings Liv a lot of joy. She even had her first taste of pink lemonade recently, and she was so curious and delighted We’re really looking forward to finishing her new therapy room soon, so Liv can begin more extensive training in a space made just for her needs.

We know how much it’s going to help her - and us. Thank you so much - from the very bottom of our hearts - for helping us make this all possible.

Much love from, Liv, Vitalia & Lasse.