To the Lake District, Glastonbury and back again.

The last couple of months have been a bit of a whirlwind. Our 100km hike came round far too quickly at the beginning of June. We walked through day and night to hit the finish line where we were joined by our little lady and her walker. It was a weird couple of days full of all kinds of emotions. My feet still haven't quite recovered and we were hit with a real wave of darkness afterwards. It wasn't at all how we expected to feel, but I think it hit us both that although we had raised tonnes of money for Reverse Rett, it doesn't actually immediately change anything for Alba. Of course we never believed it would, and funds going towards the Rett Clinic and finding a cure are so important. Between the 5 of us that walked for Reverse Rett, we've raised over £20,000 including Gift Aid. Which is incredible, and thankyou so so much to everyone who sponsored us! But I feel like as well as raising awareness of Rett Syndrome, we now need to focus on some additional fundraising that can specifically help Alba with equipment and additional therapy. We have set up a Go Fund Me page for friends who want to help but didn't know how. Our first goals are our intensive therapy trip to Lanzarote next Spring (with SwimLab) and a new wheelchair/buggy for Alba. I'll pop the link at the bottom for anyone that wants to help out.

Two weeks after our mammoth walk we jumped straight into Glastonbury. After some last minute dramas with childcare, we're so lucky that all of Alba's grandparents stepped in to look after her whilst we were away, and she had the best time being doted on by them! Since Alba was born we've made sure we both get time out alone, whether it's to exercise, see friends, shopping or whatever. But it's harder to make sure we get time out together, especially as we mostly rely on family due to Alba's needs. Glastonbury felt like such a treat, to wake up each morning and not have to worry about packing snacks, nappies, wet wipes (although they would have come in handy!) and just generally not having to think about someone else before your own needs and wants. We steward so don't quite get the full weekend as a total break, but it felt so different this year to previous years. Unintentionally, I felt so at peace just being there. I guess I also felt so lucky that we have family who can help us out with Alba. I managed to just switch off from the Rett world (mostly anyway!) and felt no pressure to see anyone in particular (Dave and Elton excluded of course). The sun shone, we enjoyed the music, chilled out in the healing fields, ate some great food and spent time with some fab friends. We set off this year thinking it would be our last time at Glastonbury, not really knowing what the future holds for us as a family and how Alba's care needs may change. But we came home adamant that we'll be back!

We got home Monday afternoon, showered and scooped Alba up from my parent's house. Tuesday morning we were in London by 9am. 10/10 would not recommend straight after a festival! But it was an important trip to the Rett Clinic for Albs. She was a superstar as always, stealing everyone's hearts. With Alba's seizures under control on a day to day basis with medication, our focus for this visit was to enquire about starting some meds for her breathing. We're still not sure when this may be possible, but hoping it will be soon. There's also no guarantee it'll make a difference and not cause negative side effects, but all we can do is try.

Typically the Thursday of that week Alba had her booster jabs which caused her seizures to flare up over that weekend. Anything now that lowers her body's tolerance can cause breakthrough seizures. I was kind of expecting it but it was still horrid to watch after 8 weeks seizure free. As always our pocket sized sunshine was smiling in between episodes and happy with her Julia Donaldson films. I'm often in awe of her resilience. We could all learn a lot from Alba. She's not been herself since those jabs (2 weeks ago now) so I'm hoping she'll start to pick up again soon. It's always harder on us than it is her, but it just doesn't feel fair. We had a conversation the other night about the fog that never lifts. Usually when something bad happens or you feel uneasy about something, you know it will stop or can be resolved and that fog lifts. Having a child with Rett Syndrome is like living in a world where that fog will never disappear. Sometimes the sun breaks through, or it rises a little higher, but it's always there.

I read some news this week that halted me, filled my eyes with tears, turned my legs to jelly and made my heart want to jump out of my chest. I follow quite a few 'Rett families' on Instagram find comfort in their words, learning about different therapies and seeing how other people move day to day within our world. But this week a darling little girl lost her battle with Rett Syndrome. She was 4 years old. She was medically far more fragile than Alba but it's shaken me to my core. As we know too well things can change in an instant. And it's filled me with a new level of terror. I cannot even begin to imagine what that family are going through and how difficult it must be for her parents and brother. I'm focussed more than ever on keeping Alba happy and healthy, and am desperate to bring a cure closer for her and all the other girls dealing with this horrid condition.

Moving forwards I also want to go back to recording and remembering the good from each day, week and month. This life is so far from the one we'd imagined but it's not always doom and gloom. So here are a few things that I'm grateful for/have made me smile over the past few weeks...

• My lovely friend for chatting to Alba as she would any other child. People often just speak to her as if she's a baby, but she's 3. She understands you. She laughs at fart noises. She gets angry if you put the wrong film on. She'll pick her cheese and biscuits off the plate before anything else. She doesn't like getting undressed or dressed. She'll swipe food from you if you turn away for a millisecond. She loves dogs. She'll often give you a kiss if you ask. And she bloody loves Gruffalo chat. So thankyou El, for doing something so wonderful that you probably didn't even realise you were doing 🖤

• The company I work for - Hobbs House Bakery - have temporarily renamed their flapjack as 'Alba's bar' to help us raise money for Reverse Rett. I feel so lucky to be surrounded by people at work that genuine care. A family business that extends the love to employees.

• Our families, showering us with love and support as always. We genuinely couldn't do this without their help. Big love to each and every one of you.

• My best pal is always there in a flash when I need her. Last weekend she had Albs for a few hours in the crossover between Dan coming home from a family party and me heading to a hen do. It meant we didn't have to choose, we could both do things for ourselves that weekend knowing Alba was safe and happy 🖤

• Despite the struggles Albs is going through on a daily basis, she never ceases to amaze me. This week she's said 'Mama' way more than I've ever heard. I'm convinced she said 'Papa' last week, I repeated it and showed her a photo of my Dad and her face lit up. And yesterday she was blowing in her drink and I told her she was blowing bubbles. Or of nowhere she said 'Bubub'. Hearing her little voice chatter away is something I crave so deeply. To have a totally random, nonsensical conversation with my 3 year old. We're not there, but I treasure these sounds. I don't know when or if they'll come out of her mouth again. But we are making great progress towards getting her an Eye Gaze machine. More on that another time!

And out from me for now. I don't really look forward to weekends at the moment so here's hoping this one is brighter ☀️

www.gofundme.com/albas-fight-against-rett-syndrome