A two-part post today.
Today I spoke to a woman whose situation shared some similarities to my own. She has a profoundly disabled child as well as an older one with no learning difficulties. Through our conversation I was reminded once more how important it is and how helpful it can be to speak to someone who knows.
The disability might be different, your family circumstances might be different but at heart there is a common bond, this wonderful child whom you love, who is the centre of all you do and who is, through no fault of theirs, it’s just how it is, incredibly demanding.
It might not be a child, you could be looking after a partner, sibling, parent. I am thinking of someone who needs constant care, constant attention.
Your life changes when this happens. Your plans, your intentions, your hopes all shift and are replaced with a new reality. You have someone who truly needs you, is totally dependant on you, all day, every day and every night.
Parenting isn’t an easy job, it’s a full-time endeavour however you decide to do it, someone has to be responsible for a young child. The difference is, they grow, they become independent, you get back some of your freedom. This keeps you going during those wakeful nights, the crying days when your baby has colic, when your toddler brings home a stomach bug, when your school age child brings home a cold, chicken pox, lice. Ack.
For many the opposite is the reality for the parent of a disabled child, your horizons narrow, life closes in on you. Those qualifications you slaved to get? Pointless as you have to give up your job to be home with your child, because you cannot say for definite that they will always be well enough to go to school. Or it’s fine while they are but you have to stop when they finish because there is nowhere for them during the week any more. Nights out with your partner or friends? Only if you have someone on whom you can rely to watch them. They are few and far between, the family and friends, neighbours, who might babysit children with no learning problems aren’t interested or are afraid to be left in charge of someone with such high levels of needs. Who wants to have that responsibility? Who wants to change the nappy of a teenager or adult? Who wants to be left with someone who might have a seizure, or whose feeding tube might block? Or who needs lots of medication at a set time?
Your friends are talking about their lovely holidays? Great. You don’t begrudge them but boy how those distant shores call you. Other countries, other places, you can no longer go because your child can’t travel that far. So you listen to the stories of their trips and then the gall as they ask why you don’t go anywhere and you want to scream at them, can’t the SEE? Do they wander around with their eyes closed?
Someone mentions a job that would suit you, it’s just the thing with your qualifications and skills. Great. Someone else can do it, you have your full-time job.
Sometimes, in the quiet of your mind you whisper, “I wish.” “I wish I could take that job.” “I wish I could take off on a trip.” “I wish I could go to bed when I want and be sure of a night’s sleep.”
Sometimes, in the quiet of your mind you whisper, “this is hard, I don’t know if I am able, I don’t know if I can go on, today is so hard I won’t be able to do tomorrow.”
Sometimes in the not so quiet you sit and weep and it’s not over anything specific and perhaps you do feel a bit sorry for yourself, this isn’t how you thought it would be. Then, then you are riven with guilt.
Your child, your parent, your partner, your sibling, whoever it is for whom you give constant care, you love them. They love you, they need you, you would not be without them for anything. They have made you one hundred times better than you were before. You know what’s important and it’s not what is this year’s nail polish colour, although there’s nothing wrong with knowing that. You know as well that treating yourself to this year’s nail polish will give you a little fillip when you most need it, why shouldn’t you have your moments of frivolity?
What I took all this time to say is, it’s not wrong to admit it is hard. It’s not wrong to say you don’t always know if you can keep on coping. It’s not wrong to wonder what the future will hold and admit it scares you. It’s not wrong to admit you are only one person, a person, not a super-person and that sometimes you need help.
Here’s a truth, if you feel that, at least one other person feels the same, me.
There are good days when everything is wonderful and nothing is a problem and why were you even worried. There are not so good days when it is bleak and black and draining and you can barely put one foot in front of the other and even the smallest knock will set you on your behind.
And now for something completely different.
The recipe for the apple cake, because I was asked.
APPLE LAYER CAKE — Oven 160℃, 325℉, Gas 3 — 1½ hours
150g/5oz soft margarine
2 large eggs, beaten
225g/8oz golden granulated sugar
1 teaspoon almond essence (I used vanilla because 17 doesn’t like nuts)
225g/8oz self-raising flour, sifted (this is cake flour, not Plain/All Purpose flour)
1½ teaspoons baking powder
350g/12oz cooking apples, peeled, cored, sliced
25g/1oz flaked almonds (I sprinkled the top with Demerara sugar, see note on nuts above)
Place margarine, eggs, sugar, almond essence, flour and baking powder in a bowl and beat thoroughly till well combined. (I creamed the butter and sugar, then added the eggs and vanilla essence then the flour, BP powder plus 1 teaspoon cinnamon, ½ teaspoon All Spice because I like a bit of taste, very yummy). I added 2 tablespoons (15ml) of milk at this point as it seemed a little tight, see how yours goes if you need to add 1 or 2, no more as the apples make the cake very moist.
Spread half the mixture in base of 20 cm/8″ loose-bottomed cake tin (make sure you grease and line it). Cover this with sliced apples then add the rest of the cake batter. Sprinkle the top with flaked almonds (or sugar or both, why not?) and bake in a moderate oven for about 1½ hours until evenly golden and shrinking away from the sides. Use a thin skewer, uncooked spaghetti/linguine/vermicelli to test for doneness, it takes a while and remember the apples will make this moist. Turn out and cool on wire rack.
© 2012, Penbleth / L. McG.-E.. All rights reserved.