This post was first published on KCNQ2 Cure Alliance on 15 August 2022.
It takes so much more energy
When you love and live with someone who has a rare condition like KCNQ2, the day to day grind can feel overwhelming. How do you keep creating and capturing beautiful memories? Here, KCNQ2 mum Claire Audibert shares her thoughts on focusing on unique and small moments of happiness, and what lies beneath a perfect picture.
“You look so happy”
Like many families, we use an instant messaging platform to share daily updates of our two sons’ progress, pictures of our weekends, little trips and big holidays.
A few weeks back, a family member said “It’s wonderful to see the pictures you share, you always look so happy on them”. He then went on: “But I also know things can be hard and the pictures don’t show this”.
It got me thinking. It’s not exactly that pictures don’t show how hard things can be, living with KCNQ2. Sure they don’t show the messiness of it all, the fears we harbor, the hopes for better and simpler days. But more than that, my view is that they fail to convey just how much work goes into creating those precious moments of happiness.
When Eliott was born and got so sick, having multiple seizures in the first few days of his life, we agreed that we would try and keep our lives as normal as possible. It quickly became apparent that the ‘normal’ life we had dreamt of was not an option, but we vowed to find a new normal. Part of that new normal was finding a way to keep traveling and to take him on little adventures.
It has been much harder than we could ever imagine. Like most kids with KCNQ2, Eliott thrives on routines, and struggles with transition and uncertainty. Fortunately, he loves to discover new places, and new activities, so we’ve tried to keep going. We know he enjoys himself and it’s good for him to be able to do new things and be exposed to new environments. But it takes more preparation, logistics, there are absolute necessities we have to take with us, like his medication, you can’t just wing it.
When we go away, we need to adjust, pivot, and adapt a lot more for Eliott than we have to for his little brother. Sure, traveling with little ones is always a challenge, and involves a lot of logistics and preparation, but traveling with special needs can be another level.
We took the boys to Disneyland Paris last Summer. It was one of our best trips. We have so many fond memories of the few days we spent there. So many pictures showing the boys having the time of their lives. But it took so much work and preparation. And it took even more adjusting and pivoting while we were there.
As soon as we booked the trip, I emailed guest services to explain our situation. We had to send a copy of his concession card and other paperwork. Explaining our circumstances is still a painful process for me. Guest services were great and sent lots of information on the support that would be offered, and they provided a card that Eliott could use to access the priority queues.
We planned everything around Eliott’s needs. The time at which we were to leave home to travel there, what we would eat, and when we arrived, how we would set up in the room. We went to restaurants where he would be comfortable, went to the park early and retreated back to the hotel pool during peak hours to avoid the crowds. That means we probably spent 3-4 hours in the park itself every day. It may not seem like much, but that was enough for him.
At times, it felt frustrating for his little brother and for us, but it’s a balance we all have to accept. It’s recognising that he enjoys new experiences and we don’t want to deprive him of it, but he doesn’t yet have the tools to tell us when it’s too much for him. It allows us to provide our whole family with that much needed holiday while respecting how much Eliott can manage.
Overall, he loved it, we all did, but even with all the adjustments, the stimulation was too much at times. Between the heat, the noise, the excitement of seeing his favorite Disney characters, and the fun from the rides, it became overwhelming. He lost it a couple of times over the two days. The first time, we managed to calm him down in the middle of a staring crowd, the second time we simply had to “extract” him from the situation. I left the park with him and we went for a long walk just the two of us. Those were not your normal toddler meltdowns, but they’re moments of real life, our real life.
These ‘high pressure’ moments when it gets too much for him can happen anywhere; at the supermarket, at the local swimming pool, at home when he’s tired, in a restaurant, or at school. If it becomes overwhelming and he needs quiet time to settle and reset, we have to listen. He can’t be talked into doing things differently, because it’s physically and emotionally impossible for him to do so.
We’re getting a lot better at listening to him, recognising the signs, and anticipating the moment when he will shift from fine to overwhelmed. That split second when it can all shift. We don’t always get it right, and it is hard to hold onto the dream of maintaining normal activities when episodes like this happen. But we keep going, day after day, moment after moment.
Capturing moments of happiness amongst the chaos
But how could we keep capturing those moments, and share those memories in the form of pictures with our families? Pictures of everyday life, but also the small and the big moments? Too often, the pictures reminded us of the whole day, the good parts as well as all the challenges that we had faced.
How could we keep taking pictures that wouldn’t in time risk becoming painful reminders of all the hoops we had to jump through just to get there?
Shifting our mindset
We had to shift our mindset. I had always viewed pictures as a way to remember a bigger experience. Seeing a picture of a family dinner would invariably be accompanied by a comment like “oh remember that day, we had spent such a nice afternoon at the beach”. But that way of thinking became dangerous when the picture of a smile on a fun ride was suddenly bringing back memories of hysterical screaming earlier in the day.
Now, we view pictures for exactly what they are: single moments in our lives. A split second of happiness. They’re proof that single moments of happiness can co-exist with crappy days. We try to capture perfect moments.
We try to make sure they represent what we’re feeling at the time, right that second. A moment of fun we shared on a water slide, some stolen time baking a cake on a Saturday afternoon, a laugh, a cuddle. We capture small and unique moments of happiness.
That brings much needed respite into our lives. Our lives are a lot different to those images we had in our heads. We’ve had to accept that our day to day will not be picture perfect. But that doesn’t mean we can’t have lots of moments of happiness. After all, who can lead a picture perfect life? No one. KCNQ2 or not.
Yes, the picture will fail to show how much effort went into making sure we could get on that ride, but they capture that one second, that single moment when we’re all laughing, and that’s the exact feeling I want to remember.
The pictures may not tell the whole story, they never do. But they reflect those perfect split seconds when we’re in the present, when we catch a break, and capture that stolen time.
Claire’s first book, The Letter E, chronicles her family’s journey after their eldest son Eliott, who is a KCNQ2 warrior, was born. The Letter E will be published in June 2022. You can get updates from Claire’s instagram account @allthelettersofficial