The Same House, A Totally Different Home

Just over nine weeks ago, we walked through the hospital doors with Eira in our arms. I don’t remember what the weather was like that day, or even what I was wearing. But I remember the way the world tilted—how the floor didn’t feel solid, how the hours stopped making sense, how my breath felt tight in my chest for days. For nine weeks, we've lived in a new kind of world. We learned new languages, medical terms we never knew existed. We lived off hope, and some days, just momentum. and then...

On Tuesday 17th June, we heard the news we were hoping for, that we had pretty much begged them for, "you can go home now". Initial feelings of joy, relief and excitement were soon overshadowed by doubt, uncertainty and dread. What was home? After being away from 'home' for over 9 weeks, only setting foot inside on rare occasions to collect things we needed, the fear crept in. The fear of the unknown.

As we carried our little girl through the door, the same one we've walked through hundreds of times. But this time it felt like walking into someone else's house. Everything looked the same and the memories instantly came flooding back, the shoe rack where she would put her shoes, the carpet we would play jigsaws on, the table and chairs she would eat her meals on, but we weren't the same. This wasn't 'home'. This was just where we lived. Seeing the hospital bed in the living room, the boxes of syringes and other medical supplies, we soon realised, 'home' would never be the same.

There's a quiet in our house now that doesn't feel peaceful yet, no beeping, no nurses, no nothing, and that silence is somehow louder than all the noise we left behind. Of course, Angharad makes up for any void of noise there may be. We are grateful to be home, but we are also exhausted, raw, and a little broken.

Coming home should feel like the end of something, of the worst part. And in a way, it is. But it's also the start of something else. A new kind of life, A new kind of parenting. One that comes with more fear, more awareness, and more uncertainty. We may be out of hospital, but we want people to understand that Eira is not 'better'. Eira will never be 'better'. Every minute of Eira's life is going to spent being uncertain, uncertain what the next minute will bring, will it be good, will it be bad. Every breath that Eira takes could be her last, and we will never know when that time may come.

People say 'you must be glad to be home', and we are, we want to be, but the truth is, we're scared. Scared of what we've lost, Scared of whats ahead. This house holds memories of life before - before the diagnosis, before the tubes, before we watched our child fight for every breath. Walking back into it now feels almost cruel. Like a reminder of a time I desperately want back, but know deep down, we never will.

I look at Eira laying in her new 'temporary sleeping space' alive and strong, and so, so brave - and I'me overwhelmed with love. But I also look back at her and see everything we endured, everything we still don't know. There are more appointments ahead, more 'wait and see'. There are no guarantees. No Cure. Just this moment, this fragile, precious now.

Adjusting to 'home' life has been extremely difficult on all of us, being reunited with Angharad brought joy to us as parents, a sense of being a complete family again, but on the other side, Angharad being 10 months old, doesn't understand. We think Eira does, and thats the difficult part.

Our first week has been spent mostly adjusting our 'home' to suit the new normal. With visits from various professionals from Hywel Dda who are now in charge of Eiras care, and visits from family, the weekend came and we wanted to do something as normal as possible - A visit to Aunty Hayley's and Uncle Josh's house.

We laughed, we reflected, and as usual we overstayed our welcome, but this was something we've done countless times before, before this. This time though, there was a difference, and it was clear, as we walked through the park, there were questions, questions that no 7 year old should need to ask, But Harri did. "Why did this have to happen to Eira? Out of everyone this could have happened to why did it have to be Eira?". I didn't have an answer to that one, just a single tear running down my cheek. I ask the same question to myself every day, accompanied by more than just a single tear. Although cousins, and not brother and sister, the bond between Eira and Harri is definitely one of brother and sister, before and now. I'm sure there will be more questions, more inquisitiveness, from both Harri and Leo, but as Harri said "We will still love Eira just as much as we did before".

Now we're at home, we're learning through the unknown. Learning that joy can exist next to fear, that progress and setbacks can live side by side. Since being home Eira has been moving her hands more freely, making new noises (some that sound like mam) and even moving her eyes more. These positives shuffled in amongst days of being unsettled, of adjusting, of not knowing.

So here we are, standing in our own living room, trying to remember how to be a family outside of hospital walls. Trying to be gentle with ourselves. Trying to feel joy again without the guilt. Trying to hold the tears back and be 'okay. People see the that we're 'home' and call it the end of the story. But it's not. It's just a new beginning we didn't ask for. One we're not sure how to navigate.

The Same House. A Totally Different Home.