How to make the most of life

gratefulforhelp_2

Flora_Poste wrote: »

I have that sort of ' make the most of life ' attitude anywY so I have a kind of rolling sixth month plan of what we are doing. I try and fit in five (FIVE!) holidays a year. Obviously not big ones but lots to look forward to. Camping, which I hate but everybody else loves, staying with relatives, tesco rewards vouchers for a cheap hotel. Then one family holiday in the summer. I also make a big deal out of Halloween, Easter, bonfire night, birthdays etc. Invite friends and family round for a themed tea party, bring your own fireworks etc, make cupcakes. Also drive out somewhere and fly kits on the beach with a picnic or wade in a river and get really muddy. Generally there's something doing every other weekend.

Amazing energy :T:T:T:T:T

Flora_Poste

I know, cant help myself. I am driving the rest of them up the wall.

Don't do that much housework tho :-)))

make_me_wise

I really admire your strength OP. I cannot imagine being in your shoes hun. If I were, I think I would just want to make the most of every moment. Do things that you enjoy; live, love and laugh your way through each day. Dont sweat the small stuff. Take photos, make recordings.

I hope they find a cure and that you will never have to look or listen to them to bring comfort.

caitlyn22

Hi Nicklepic, I remember your post from this time last year, can't believe it's been that long, it sounds like it's been a really tough year for you.

I second what everyone else says about making the most of each occasion - I go a bit mad over birthdays/Halloween/Christmas etc, just because I want the family I have left to be together and enjoy every moment. What I'm probably guilty of in all of that (besides driving everyone a bit mad with my planning Christmas in March!) is some time for myself. I find it really hard to relax because I am caught in this cycle of planning, always feeling as if life is going to smack me sideways again and so in truth, I'm probably missing out on the very moments I'm trying to create.

I've found just a day or an evening to myself once every couple of weeks is enough, a night of TV to myself, a good book, a long walk, the odd weekend away with my OH, all really help me. I still care for my mum and the guilt of leaving her to have 'me' time is terrible but I'm better for it when I go back to her. I can imagine it will be much harder for you when it's your little boy, but it's still something I'd urge you to do.

You have put one foot in front of the other to get to this point and now you recognise you want to be living life again, I can't tell you how strong that makes you.

Don't know if you know it but there's a book by Jostein Gaarder called Sophie's World, about a young girl who learns about life/philosophy and in it, there's a section where life is described as this big magic trick:

"A white rabbit is pulled out of a top hat. Because it is an extremely large rabbit, the trick takes many billions of years. All mortals are born at the very tip of the rabbit’s fine hairs, where they are in a position to wonder at the impossibility of the trick. But as they grow older they work themselves ever deeper into the fur. And there they stay. They become so comfortable they never risk crawling up the fragile hairs again. Only philosophers embark on this perilous expedition to the outermost reaches of language and existence. Some of them fall off, but others cling on desperately and yell at the people nestling deep in the snug softness, stuffing themselves with delicious food and drink."

It's a nice way of describing philosophers but I think all of this can also be said of people who face the kind of cr*p life is throwing at you - you might have been nestled down but you're back at the tips of the rabbit's fur and you can see the whole trick, and know the importance of enjoying it, while you're here!

Best of luck to you all and well done, because there's nothing harder than *just* surviving sometimes.
x

Make-it-3

I agree, it would be easy to make a wish list of expensive things to do or places to go - but for me it would be the time spent together as a family, laughing, doing things as a team. Carving a pumpkin for halloween, making Christmas decorations, a snowman, splashing thru puddles in the rain, making real hot chocolate on a winter's day. Celebrate the festivals, holidays and seasons. Make sure everything you do makes him feel as included as possible particularly if his condition already alienates him from some activities.

pendine50

Just something I did with my son and a few other mums and their children.
we let them stay up until midnight and then dressed up in Halloween gear and went for a walk through the local woods carrying torches and candles.
Very simple and no cost but the children loved it!!!
Home after 40 mins or so hot drink and bed.
They still talk about it now ....

meritaten

Yes, make the most of time, DO all those things that you have vaguely planned. you know, the trips to disneyland, seaside holidays etc - but dont try to pack a lifetime into the next ten years! normality is good too! never lose hope - otherwise you will start to mourn, and thats not healthy.
your child may need recovery time between trips too - so dont try to pack too much in! exhausting your child is not a good idea. pace yourself - and dont make the child feel everything is its last chance to do things! oh - and dont forget that simple pleasures, like a favourite DVD with popcorn and all the family having a laugh and joke, can turn into precious moments.