Hey. How’s things, newly diagnosed self? Actually, you don’t need to answer. I know.
Let me tell you about my few days…you listen. It’ll help – bit like a shining light from a dark tunnel. Wondering if you’ll ever get out…
This week we spent a few days in Cornwall. I know that seems light years away from your life right now, but it’ll happen. You cannot imagine it, I know. Feels like all you can do is to remember to breathe, I know. But you will one day breathe without it being an emotional effort, and this week you breathed beautiful Cornish air with ease.
Feel reassured….you see our two babies sunbathing under their own phototherapy lights right now, in their plastic boxes and accompanying wires, they went too….all together as our little family of five. The twins swapped those artificial lights for the warmth of the summer sun. They swapped their incubators for little beds with white bedspreads. They swapped the alarms that make your stomach lurch with fear for the dulcet tones of the ice cream van. They swapped all the wires that surround their tiny bodies for buckets and spades.
I can remember the thoughts that you are experiencing now, that life will never be the same again. ‘Holidays are long gone’… well, yes it won’t be all inclusive trips with Caribbean swim up bars. It certainly won’t be walking holidays in the valleys or sight seeing trips to Ancient Greece. You will see many a photograph via social media of other people’s holidays during half terms, and I’m not gonna lie, for a second you’ll wish you could do those trips – but, just like all areas of our ‘new life’, you adapt and react. This is just part of accepting that this is how things were meant to be. You and I weren’t destined for the dizzy heights of New York or lazy days by a spanish spa. I’m not sure how we will ever get on a plane. That all seems very complicated when you can’t sit up on your own. But, what we have in our life is just as beautiful, albeit different and definitely not as glamourous. Holidays aren’t priority but when we do get chance they are wonderful, (with some days the unwelcome thrills of medical adventures which give you the adrenalin of a fast theme park anyway, but I won’t freak you out now with that). You find ways to make things work and by learning as you go along, things work out just fine.
Our ‘just fine’ was a few days in Cornwall which was perfect. No, we can’t afford big trips (and to be honest we don’t have the balls to do one yet anyway …) but we are lucky that cousin Rik has a place in Cornwall we can escape to once in a while.
We only went for 4 days as Reuben was called in for an MRI scan, (no results yet, newly diagnosed self, but I’ll keep you posted. However, you’re about to go through the process of Reuben’s very first MRI, so you concentrate on that one and I’ll manage this one. This new life is all about one step at a time). Some people might grumble that they only had 4 days away this year. However, it’s what you do with it and how you see it that counts.
We packed up the car to make our ‘hospital/home from home’ when we got there. Wheelchairs and drugs and equipment and medical supplies took most of the room in the luggage. Long gone are the days when most of my suitcase compromised of heels of various heights and sets of swimwear. There’s always that small sweat on where you worry you’ve forgotten something, but you’ll learn that you have to become even more organised than the entire British Armed Forces, so no fear. You’ve got this.
The trip in the car is always interesting. Trying to manage Zach’s ASD traits was pretty much an epic fail in the four hour car journey. You can now recall the words of ‘History’ by One Direction better than the band themselves, having had it on constant repeat for the whole time, so to avoid a backseat meltdown and a ‘Zach shaped’ rebellion against travelling. All this whilst wondering when the next service station stop should be to reposition Reuben in the absence of him being able to move himself or when to feed him mid journey to avoid choking.
When we crossed into Cornwall, I almost felt a wave of stress just disappear. That’s even after the blood pressure inducing trip as described above. It’s our happy place. You will feel that one day soon, Newly Diagnosed Self. A place where we relax and recharge, and although we take the conditions and the diagnosis and all that stuff with us, it is our time when we slow down. A time when we sit back and realise even more how well the twins are doing and how lucky we are that these 3 incredible little boys are ours. How yes, things are tricky but how grateful we are for them. When you slow down and not join in the rat race of real life, it’s easier to notice the tinier but more precious important things.
The children love it there. Let’s face it, it’s not school and it’s not a hospital. What’s not to love?!
They love the weather. This week we were blessed with beautiful sunshine, but even in the wetter weather they love watching the storm across the sea.
They love the ice cream. Those words you are hearing right now, Newly Diagnosed Self, about Reubs never being able to eat?? Yeah, that’s a load of rubbish. That boy downs a cornetto like it’s becoming extinct.
They love the little arcade that’s near the sea. The wonder of the neon lights. (You may wanna start collecting your 2p pieces now as I’d feed my life savings into those machines if it meant I could see the smiles that creates on their gorgeous faces every day).
They love the beach. Zach loves digging (and throwing sand at people, but that’s work in progress). Harry builds Reuben a little seat out of sand in a hole that Zach digs, so he can sit up unsupported a little to play. It’s a brotherly trio of team work. They play imaginary castles and there’s always a pesky dragon who lives in said castle. I want to be the princess in the castle but we never get that far. So outnumbered we are, Newly Diagnosed Self! All these boys!
You see, there is a light at the end of that dark tunnel. All of this will seem so impossible, but it’s not. Anything is possible if you try hard enough.
And we do try hard. We do try hard to make this life as great as it can be. No, holidays aren’t easy. They take a lot of effort. There’s no hoist, no local hospital who know our names and nothing is particularly easily accessible. We have learnt that we have to pull the wheelchair across the sand as the wheelchair gets stuck and tips. We have learnt we need to take a specific tent with us so Reuben can hide away with us a little if things get too much. We very quickly learnt we need to have the eyesight of an eagle with the speed of Bolt in case Zach does a runner. We pack a picnic with special contents so Reuben can enjoy it and join in and not choke. We learnt the medicines take up as much room as the food. Mike, super daddy, has learnt the back pain of holding a 22kg Reuben up for ages so he can feel the tide across his toes. I learnt to try not to let my heartbreak every time Reuben watched the other children running in and out of the waves, asking if he can do that too.
I love the peace. No phones ringing to check you are aware your appointment schedule at the clinic. No emails checking the latest care plan. No letters dropping through the door with the next surgery date.
I love watching their faces experience everything. Such different faces to the ones I see in hospitals or clinics. Faces of awe, not fear or exhaustion.
I love it when they are tucked up in bed after a day at the beach. Little sun kissed faces with hair smelling of sea salt. Sand still between their toes.
Cornwall is good for our soul, Newly Diagnosed Self. A soul which has, and often still is, troubled. It’s been a place and time to reflect on events of the past 6 years and ponder on events that are yet to come. Just like you, Newly Diagnosed Self, I’m about to embark on more procedures and admissions for the twins. It’s a scary thing, and we’ll always have that in common but the main difference between us is that I’ve made my peace with it now.
Many a year I’ve spent so angry at Mother Nature since the twins arrived. Yet, in Cornwall I felt closer to her than ever. On the balcony in the evening, a light breeze across my face, the sound of the grasshoppers in the long grass accompanied by the heavy thud of Herringgull’s webbed feet on the roof. I watched the big red sun set across the vast open sea in only a way I have seen in that part of the world and really realised I wasn’t in charge. The power of Mother Nature decided this destiny for the twins, but in turn, that decided our destiny too. It resonated with me this trip, that that is ok. And once again, Newly Diagnosed Self, I was sent a reminder that you and me are gonna be just fine.