A wheelchair ramp has now been fully installed at the back of the house. It’s huge! Paul and me were stood in the garden the other evening contemplating how we could improve the remaining space and make it into a nice place to sit during the Summer (assuming we get one).
“We’ll have to bring the paving out further” I said. “The ramp now covers the existing slabs and we need a place to put furniture. “
A discussion ensued about the logistics of it all. Jack had been hovering in the background for some time and I could see he’d got his own thoughts on the matter in hand.
“Don’t worry Mummy. We can just put everything back to normal when we don’t need the ramp anymore” he said, quite matter-of-factly.
The implications of what he had just said flashed through my mind as I glanced over at Paul. He had an amused expression on his face which began to turn into a large grin.
“Ohhhhh that’s right Jack!” he exclaimed. “When Daddy’s dead you can have it however you like!”
He laughed at his own dark humour. Jack laughed too as he wondered back into the house; “Well it’s true” he muttered to himself, knowing he had a perfectly valid and reasonable point.
You see, we’ve been honest with the boys right from the start. They know the future outcome of Daddy’s illness and they are processing it every day in their own separate ways. If they ask questions we give them truthful answers. Nothing is sugar-coated. We don’t hide anything. When we are sad, we cry. When we get angry, we shout. When we are happy, we laugh. And because the boys see us this way they are open with their own feelings and emotions and will express themselves without worrying about what our reaction might be.
During the past year I’ve learnt that kids are tough. They adapt to circumstances far better than adults. We grown-ups over-think everything. We over-analyse and worry about things that haven’t happened yet and may never happen. Kids don’t. They take each day as it comes and live in the present. The beauty of this is that it makes any given situation much less scary or stressful because they are simply dealing with their current reality and not 100 different imaginary scenarios.
I have tried to take a leaf out of their book. When people say to me “I don’t know how you cope”, I simply say it’s because I have no choice. We have to play with the cards we have been dealt and get through one day at a time. One thing I’ve most definitely become aware of is that everyone is fighting, or has fought, some kind of battle. It’s just most of us are too wrapped up in our own woes to realise. But by taking it day by day and not thinking about 6 months or a year down the line, we stay happy. And we are happy in the midst of it all. This road we are walking has forced us to appreciate each other and everyone around us more than ever before. And not sweating the small stuff we have the freedom to be happy, together.
Which leads me on to tell you how important our friends and family are in the midst of all this. Especially considering how difficult it is for them too. In fact, if you’re reading this, you’re probably one of those people I’m talking about, so I’m going to address you directly, because I haven’t up to now.
Thank you for everything. You are amazing. Whether you have organised events, donated your hard-earned cash, participated in sponsored activities, given raffle prizes, or spent your time and energy helping us no matter how big or small the gesture, we want you to know it is appreciated so much. Your love and support helps us get through every day. You are the best, and I hope that knowing how much you are helping us makes you feel good about yourself, because you should. Thank you so, so much.
To keep you in the loop, the next steps for us now that the ramp is in place and the fancy loo seat is up and running (if you ever use it expect a full tutorial from Max including strict instructions not to press the ‘turbo’ button*), is the installation of the through-floor lift and wet room. The council have (unexpectedly) approved the funding for a disabled elevator from ground floor to first floor, and the builders have started work already. We have quotes in for the bathroom to be made into a wet room, and the Robert Sinclair-Davidson Foundation has kindly offered to cover the costs of that, which is amazing. This means that Paul will maintain his independence as much as possible and be able to move freely around the house. Something you take for granted until you can’t do it anymore.
So, that’s our news so far. Paul is cracking on with life and fighting every step of the way. He’s breaking all the plates. He’s spilling all the drinks. He’s banging into all the doors and walls. He’s insisting on feeding himself even though it takes him an hour. But at least he’s doing it.
*PS: The ‘turbo’ button is an enema. Don’t press it. “It shoots right up your bum hole”, Max says. Just so you know.