When someone you love dies, you realise there is an end. Such a basic concept, part of life, but one we fail to consider until grief blows its chilling wind. Death of a loved one changes everything. It bleeds into every nook and cranny, stains memories and silences dreams.
Yet life rolls on, without hesitation, relentless and brutal and somehow still amazing. The shock can catch you months, no years, into your mourning. When you think you’ve got it licked, think you can breathe again and look for the light, feeling its warmth, a piercing blade will deeply slice, cutting you anew.
What holds you together are the people you love who still breathe. To know that they struggle and feel as you do, hold all your memories in their heads too. To be able to reach out and touch them, smell them, is just about enough to stop you from sinking. But the future will have changed, it’s different now. Because knowing there is an end, brings an understanding of joy along with a painful curse. You want to hold on tight, gather those you love and forbid them to move yet urge them to greedily consume fun and love until they burst.
The question of how long, is in all our mortal thoughts. Not to know is best; I’ve seen what the flip side can do. So think big, think great, think long - why not? But I know now to make haste, not to waste another moment. To look for the little bits too, the ones you’ll miss because your eye is on the giant plan, these are the bits you’ll cherish the most.
Who are we without the ones we love? They are the most important thing. Not the size of the house or the car, not the wink of the diamond or sheen of the pearl. Without our loved ones we have nothing, no witnesses to our lives. When you strip it all away the only important certainty is our relationships, it’s what makes us human.
Having a child with Down’s syndrome can be a bit like that. The slow realisation that you can never change what you were not expecting, however much you’d like to. That life can be brutal and cruel as well as magnificent and joyful. Usually it’s a mixture of both. It’s not that you don’t want the person with DS, it’s just a shock when you first realise and you’d prefer they had been given all the benefits everyone else enjoys.
Such benefits can be so different for each and every one of us and some just a jumble of skills we never even realised we should cherish. The gold star ones are what make us proud. And we cheerfully take them for granted too. We never consider the merits of a strong spine or a quick tongue. We never think twice about tearing open a bag of rice or slicing the bread with a razor sharp knife. We can all do that right? Not my son.
But the same is true for individuals with DS; they have skills, only they have fewer to choose from. They struggle, although I question whether we really notice how much. They are massive achievers, only we can’t see it. We judge them by our own goals and aspirations. They have goals and aspirations too, but they are forced to tailor their dreams, make them bespoke. Imagine how that must feel.
The shock never goes away, for me anyway. That’s not to say I’m in denial, I’m most certainly not. But I wish..... I wish my beautiful son could be who he wants to be. A father, a Director of films, an independent young man with a dog and a mortgage. Flip the coin, what’s so bad? – Who wants a mortgage anyway? Maybe nobody – but to have the choice, that’s the clincher. I’d like my son to have choices. We give him as many as we can, but I’m not talking about the choice of tomato ketchup or mayonnaise, or mashed potatoes or chips. I’m talking about the choice of whether to drive or walk, to stay in and read or pop out to a wine bar and meet friends. I call them premium choices. We’ll make sure he gets as near as he can to those premium choices, but my son will always know wherever we end up, it’ll always be a smidgen short of premium.
So we return to the most important thing, the ones we love. Plus those little bits in the nooks and crannies, the ones you’ll miss if you don’t watch out. It’s rather simple really, it irks me that we all require such extravagant wake-up calls. But once they’ve made themselves clear, it’s hard to ignore them. Just focus on the most important part of life, relationships. Ha! What’s to go wrong?
Friday 5 February 2010
Wednesday 27 January 2010
Two great passions
There are two things of great, but equal importance to Max, food and wrestling. Food just tips it. He has even confused the merits of religion, with the merits of food. Not particularly hard to do when you think about it. All religions seem to gather people together with the allure of a feast.
A few weeks ago Max came home from school declaring that he was going to fast the next day because of his religion. To be clear, as a family we are not religious, very welcoming of all faiths, and like Max, rather enjoy all the religious festivals involving food, but are not participants. Paul was born Jewish but has gone off the rails since then – for one thing, he’s married to me. I am not Jewish, but we are surrounded by people we love, who are. Many celebrate the festivals and all the delicious culinary delights this entails and Max embraces this marathon of eating wholeheartedly. I applaud such dedication, but I was unaware of any festival coming up on the horizon.
So I was puzzled, as well as astonished, when Max proposed to fast. With a little detective work I figured he must be talking about Ramadan. One or two of the boys (there are no girls in Max’s class) could possibly be Muslim, so I pointed out that it was probably a Muslim, not Jewish festival, but Max was having none of it. He was determined to fast for the day and that was that. I can only imagine that there had been a discussion of some great culinary reward.
The following morning I chose to ignore our conversation of the previous evening and I placed Max’s beloved bread and butter in front of him, and was met with his usual gleeful thanks. I’ll admit I was surprised, but made no comment, when later, after he’d finished his breakfast, Max made a big fuss about returning the contents of his lunchbox into the fridge, suggesting I was a very silly mum for forgetting that he was fasting for the day.
Carol and Pauline the driver and escort of his school bus, fell about laughing when Max declared he was fasting for the day. His reputation as a foodie is huge, but he was not amused at their jesting.
Later, when I arrived at Max’s school to take him to his tutor Julia, I was immediately greeted with,
‘Where’s my lunch?’
‘Oh, Max. I thought you were fasting my love.’
Wicked I know, but I just couldn’t resist it. And Max’s reply said it all in a grunt. Still, it was rather amusing and I suppressed a smirk as I handed him his packed lunch. He was soon munching on a favourite egg mayonnaise sandwich. Perhaps the path of dedicated religion is not for Max after all.
After food, wrestling does come a very close second for Max. He adores the whole drama and festival of the sport. My Grandmother was the same. I remember her raising her fist at the telly in triumphant adulation as Big Daddy was pummelled into submission. She too loved the drama and took great delight in verbalising her thoughts for all to hear. I just saw two old men with rotund tummies wearing big black pants. And that whole counting thing..... what is that?
Max has some wrestling idols. On Saturday he took a computer printout of John Cena (seriously important wrestler) to the barbers and demanded to be able to walk out looking like his hero. Very smart the result looked too. However I’m a little concerned about the tattoos these beefy giants rejoice in littering over their skin, (although I am attracted to such graffiti in a weird kind of way) but that’s a bridge we will have to cross when we come to it. For now, I’m happy to wave goodbye to Max and Paul as they pop to Brent Cross shopping mall to cruise along the aisle in Top Man looking for ‘bling’.
It’s a passion he shares with his mate Robbie. Thank goodness neither of them have been drawn to ‘acting out’ any matches. They both prefer to get right up close to the television screen and stuck into the pantomime. I’ve noticed that a great deal of interest is given to the female wrestlers and all their beauty. Suddenly Max and Robbie are keen to watch the girls strut about in uncomfortable looking leather and steel spiked swimsuits with dangling tassels and giant hair, just as much as the men!
They relish the full glamour of WWE, RAW and Smack Down, save up for DVDs and Wii games, proudly wear t-shirts with their idols full frontal and get over excited when something new is due to hit the shops. But they are also just as happy to buy tickets for the local wrestling matches held at the church hall up the road and refereed by the vicar, Father Benjamin.
Whatever Max’s passions, you can guarantee that he will pursue and enjoy them with gusto. He is completely nonjudgmental, embracing all that life throws at him, very sure of what he wants and determined to get it. Compromise is not a word he is comfortable with, but he soon moves on if it’s made clear to him that something is impossible or not appropriate. He is a joy to watch when he’s having fun. And it’s not because fun passes his way infrequently, on the contrary, but because he demonstrates a joy of life that we should ass share – we just need reminding. And thankfully, I have Max to do that for me.
A few weeks ago Max came home from school declaring that he was going to fast the next day because of his religion. To be clear, as a family we are not religious, very welcoming of all faiths, and like Max, rather enjoy all the religious festivals involving food, but are not participants. Paul was born Jewish but has gone off the rails since then – for one thing, he’s married to me. I am not Jewish, but we are surrounded by people we love, who are. Many celebrate the festivals and all the delicious culinary delights this entails and Max embraces this marathon of eating wholeheartedly. I applaud such dedication, but I was unaware of any festival coming up on the horizon.
So I was puzzled, as well as astonished, when Max proposed to fast. With a little detective work I figured he must be talking about Ramadan. One or two of the boys (there are no girls in Max’s class) could possibly be Muslim, so I pointed out that it was probably a Muslim, not Jewish festival, but Max was having none of it. He was determined to fast for the day and that was that. I can only imagine that there had been a discussion of some great culinary reward.
The following morning I chose to ignore our conversation of the previous evening and I placed Max’s beloved bread and butter in front of him, and was met with his usual gleeful thanks. I’ll admit I was surprised, but made no comment, when later, after he’d finished his breakfast, Max made a big fuss about returning the contents of his lunchbox into the fridge, suggesting I was a very silly mum for forgetting that he was fasting for the day.
Carol and Pauline the driver and escort of his school bus, fell about laughing when Max declared he was fasting for the day. His reputation as a foodie is huge, but he was not amused at their jesting.
Later, when I arrived at Max’s school to take him to his tutor Julia, I was immediately greeted with,
‘Where’s my lunch?’
‘Oh, Max. I thought you were fasting my love.’
Wicked I know, but I just couldn’t resist it. And Max’s reply said it all in a grunt. Still, it was rather amusing and I suppressed a smirk as I handed him his packed lunch. He was soon munching on a favourite egg mayonnaise sandwich. Perhaps the path of dedicated religion is not for Max after all.
After food, wrestling does come a very close second for Max. He adores the whole drama and festival of the sport. My Grandmother was the same. I remember her raising her fist at the telly in triumphant adulation as Big Daddy was pummelled into submission. She too loved the drama and took great delight in verbalising her thoughts for all to hear. I just saw two old men with rotund tummies wearing big black pants. And that whole counting thing..... what is that?
Max has some wrestling idols. On Saturday he took a computer printout of John Cena (seriously important wrestler) to the barbers and demanded to be able to walk out looking like his hero. Very smart the result looked too. However I’m a little concerned about the tattoos these beefy giants rejoice in littering over their skin, (although I am attracted to such graffiti in a weird kind of way) but that’s a bridge we will have to cross when we come to it. For now, I’m happy to wave goodbye to Max and Paul as they pop to Brent Cross shopping mall to cruise along the aisle in Top Man looking for ‘bling’.
It’s a passion he shares with his mate Robbie. Thank goodness neither of them have been drawn to ‘acting out’ any matches. They both prefer to get right up close to the television screen and stuck into the pantomime. I’ve noticed that a great deal of interest is given to the female wrestlers and all their beauty. Suddenly Max and Robbie are keen to watch the girls strut about in uncomfortable looking leather and steel spiked swimsuits with dangling tassels and giant hair, just as much as the men!
They relish the full glamour of WWE, RAW and Smack Down, save up for DVDs and Wii games, proudly wear t-shirts with their idols full frontal and get over excited when something new is due to hit the shops. But they are also just as happy to buy tickets for the local wrestling matches held at the church hall up the road and refereed by the vicar, Father Benjamin.
Whatever Max’s passions, you can guarantee that he will pursue and enjoy them with gusto. He is completely nonjudgmental, embracing all that life throws at him, very sure of what he wants and determined to get it. Compromise is not a word he is comfortable with, but he soon moves on if it’s made clear to him that something is impossible or not appropriate. He is a joy to watch when he’s having fun. And it’s not because fun passes his way infrequently, on the contrary, but because he demonstrates a joy of life that we should ass share – we just need reminding. And thankfully, I have Max to do that for me.
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