Thirty. The big 30! This year in April, we celebrated Kiaana's 30th birthday. Woohoo! What a milestone! When we got the diagnoses, we were told late teens to early 20s. And here we are still weight bearing (with lots of support), still taking steps (in my arms), still eating by mouth (mostly, though this week suddenly there's been lots of challenges with that), still sitting up on the edge of the bed (a few minutes every morning and night while someone catches her if she falls), still standing (in a standing hoist with legs straps), still smiling and laughing (even though we have a lot of days lately where there hasn't been as much as usual and that breaks my heart and has me terrified inside, always wondering when the last real happy smile will be).

 

We had a lovely, fairly simple and intimate celebration at home which was much more about connection this year than about the big parties that we have had for Kiaana previously. Previously we had big community events, loud live music, speeches, newspaper articles, asking for donations, raffle prizes and all that jazz, full of people that are close, people that we kinda know and lots of people we never even met. Because I was that Mum that hijacked her 18th and 21st birthdays to host big "Beats for Battens" community fundraisers and awareness campaigns for batten disease. They were amazing, and meaningful and memorable and absolutely worthwhile and I'm so glad I did them. Not just for the BDSRA, but mostly because it turned Kiaana from the angry, rebellious vision impaired girl that got bullied and was always getting in trouble at school, who didnt have friends to come to her birthday parties, (long before the diagnosis which for us came as late as age 16) into the inspiring young woman with an amazing sense of determination and courage who got up and sang Miley Cyrus's "The Climb" in front of 150 people, and was now recognised by people in the community who would come up and tell her what a moving night it was and how beautiful she is. It truly changed our lives and was incredibly cathartic.

 

So in the lead up to this year, I kept wanting to do something even more amazing than ever before, and I had all kinds of ideas floating through my mind, but suddenly the month was upon us and I hadn't done anything. I just didnt have it in me. I didn't even have it in me to do a big party just with friends, like we've done in the in between years. To be perfectly honest, this year, in many ways, I just couldn't wait until it was all over. So I hired a couple of support workers to organise a party for KIaana and let them take charge. It was lovely. We had a pass the parcel game where each layer began with a familiar rhyme or saying of Kiaana's to be read out, and a pot luck description of someone in the room, that would lead to who's turn it was next.When each person had their turn, they were given a little affirmation card, an Easter Egg and invited to come up and tell Kiaana and the group how they met her and share a favourite memory of her. It was just wonderful listening to each person speak so fondly of their memories of Kiaana and there was lots of laughter and lots of heartfelt tears. And Kiaana absolutely loved it, took it all in, and clearly felt the connections and the loving positive vibe that everyone shared. It was a wonderful afternoon. No strangers, no public awareness. Just the close family and a few friends, mostly who spent some time as support workers and really got to know Kiaana and some of her current team, and a few new friends from the drumming group we just joined. And no-one else mattered in the end.

 

Yet I've been so conflicted about even talking about it this year. And I cant really explain why. Thirty was THE BIG NUMBER. When Kiaana was little she struggled with maths, but she could always tell us all how old we would be when she turned 18, or 20, or 25, or 30, or any number in between. Every year, every day, she would count down to her next birthday, from the very next day after each birthday. And she was always talking about getting older, always counting the days all the way up to 30. Thirty. The details of those days are all long gone in my memory now, but this vague recollection of that girl that was so obsessed with wanting to grow up has been niggling at the back of my mind all year. I don't remember when the counting stopped. Many years ago now. I just know that talking about turning 30 this year didn't have the same impact that I thought it would. Kiaana didn't get to celebrate it within herself like I would have hoped for, because the truth is, Kiaana's ability to comprehend what that means has gradually faded over the last few years. Not completely, but she's definitely in what I call "her autumn years" these days. Some days she's still pretty sharp and switched on, and she definitely still has a wicked sense of humour and is just delightful to be around, but I see what's happening to her, I see her fading, I see her losing abilities, letting go more and more, both physically and metaphorically. So much so I can write this about her, without her, but this one I probably won't read to her, as wrong as that feels, because I would never do anything about her without previously, but now, I don't want to talk to her about what's coming. I don't know how to. Or if I even need to. I just need to make sure she feels safe and loved. And I don't want to allow the words that describe my fears, and my sadness to hit the air, I don't want that to be our story, or our focus, yet I constantly live with the weight of and the ever-clenching pinch of time, and honestly don't know if we have many birthdays left. So this one should have been the big one to celebrate the most, the one to remember, the one to put the greatest effort into. And it's hard to shake the feeling of guilt that comes with that. But I just didn't have it in me and I let it pass by instead, just grateful that I was able to hand it to someone else to make it small and intimate and special for us. And I follow Kiaana's lead and just let go, more and more of the things that just don't matter. I often find myself saying that not even I can imagine living the life we do. It's such an unusual existence, but I can't even describe it. Not even to others on the same path, struck with the same lightning bolt. We used to be the ones that gave others hope, or at least that's how it felt, knowing that Kiaana had a slower than usual progression of the disease and was out there living her best life, full of opportunity, thriving, busting down expectations, a real go-getter. And I've always tried to remain positive and grateful, and for the most part, I still am. But the truth is I'm tired, and I feel myself aging faster than I thought I would, despite all the funding we secured in the 3.5 year battle with the NDIS at the AAT that took everything I had within me. And I don't want this chapter to be my story, or Kiaana's. But this is how it is. It just is how it is. And caring for a beautiful young 30 year old woman with batten disease, in her autumn years, it's become all I know, even though every next new normal that we face, I find myself in unchartered waters, totally unprepared for the reality. Would I have it any other way? Absolutely. But despite it all, I do still feel very blessed to be Kiaana's Mum and to be given the opportunity to love and protect her. And I'm very proud of her and so so grateful that she made the BIG 30.