2019 ZUK Family conference

So it’s that time of year again, no I don’t mean Christmas. It’s the Zellweger uk annual family conference. A weekend filled with fun & games for all, fantastic speakers and special time with my ZUK family.This is my 2nd year going to the conference but I’m overjoyed to be a part of the organisation rather than just a participant. The amount of work that goes in behind the scenes is phenomenal, the big tasks like putting the agenda together to the smallest of things like making sure everyone had the right size t-shirt. Every second of work is worth it when you see a room full of families on the same journey.

Arriving on Friday; mum & baby Layla are in tow and I’ve got my organisation hat on, I can feel the nerves fluttering in my tummy. I’m a little bit nervous as this is MY first ZUK event as part of the team and I don’t want it to go badly (I want to be invited back to help next year). On arrival I see the ZUK banner and straight away I find our boy. Evan and his gorgeous big blue eyes, I’m reminded in that moment that none of my ZUK family got to meet Evan which is met by a sharp pang in my chest. Seeing my fellow organisers is comforting, we’ve spent HOURS messaging, conference calling etc to get ready for this weekend. Hugs are traded and jobs agreed …. things are going well!! Time ticks on and suddenly it’s go live time …. the conference rooms begins to fill and the mic is on! Excitement overcomes me and as the words Health & Safety are uttered I see the excitement drain from the audiences faces. Friday goes to plan ….. one day down but the big one is tomorrow. Saturday AM early start for everyone, luckily I have a 12 week old baby so there’s no chance of a lie in for me. My room is filled with excitement, Faith & Imy chattering about what activities they’re most looking forward to, Layla babbling away & my mum building herself up to take on Group B (ages 7-11) for the day. After breakfast the conference room once again begins to fill, what an amazing feeling seeing the ZUK family all together. Full room means mic to Alex, I have to say this is one of the only times I’ve had a mic in my hand and not started singing an 80s power balled …. the audience would be so lucky! Introductions done, carers and groups are off to their first activity and we’re pretty much on time (at this point I’m internally high fiveing myself for pulling this off). The conference is underway, the first speaker is up, tea & biscuits are on hand and everyone appears happy.

The day is going well (so far) and we’re reconvening for the annual conference photo & bubbles session. The bubbles have been handed out, pictures taken and now I’m up, The bubbles poem, words about remembering our lost children, I’ve got this …… or not!! As the words start to leave my lips I can feel my voice trembling and my eyes welling. Why is this so hard ? It’s hard because I see the faces of parents that are without their precious children as I am without mine, it’s hard because I see them too holding back tears & trying to be strong. In this moment it dawns on me that the beauty of this family is that you don’t have to try and be strong, you can be sad, scared and distraught, there is no judgement only understanding. Bubbles are blown and tummies are rumbling, lunch is followed by more speakers & exciting activities such as archery, shooting, pedal karts & music sessions. I think I’d rather be a child I’d like to try my hand at archery, but there are jobs to be done.

Our fabulous speakers continue to wow us with their knowledge of PDBs and passion for our children. As the day draws to a close we share memories & pictures of our ZSD warriors, some are funny, some are proud moments and some are heartbreakingly sad. The last item on the official agenda is quite possibly my favourite, we have the absolute pleasure of watching a FANTASTIC video (well done Tash) showing so many happy moments had by ALL of our children. The room is again full of people both smiling & crying but this is a safe space, no judgement only understanding & support. The raffle signals the end of a fantastic day, 3 tired organisers (Kerry & Tash you’re both incredible) and many a happy family. Children (more so the carers) are worn out after a fun filled day of activities and families all come together in our stunning ZUK T-shirts’ for a last supper.

The final meal of the day closes the door on 2019s family weekend and starts turning the key in the lock of the 2020 conference. As I sit in my room and reflect on what I felt was a very successful day (another internal high five for me) I’m filled with mixed emotions, I’m glad I’m at the conference, I’m super happy to be a part of team ZUK, but I’m also sad that the reason I am part of this (and every other family is part of this) is because we’ve either fought or are still fighting the ZSD battle. I think of all the love, courage, bravery, strength & resilience that I’ve seen in all these families and I’m so proud of the fact I’ve got to spend my weekend in their presence. I have so much admiration for my ZUK family there isn’t a word good enough to do it justice.