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)
Method
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.
Dawn Tucker - I’m glad you can use this space to vent and let out your feelings. And I hope you don’t spend too long feeling guilty because you’re going through a bad patch. I would rather you could feel proud sometimes about how well you’re all coping – but I can well understand that doesn’t come naturally as a Mum, much easier to feel guilt than pride.
I hope you had a good anniversary and enjoyed the cake 17 made. We ‘celebrated’ our 23rd anniversary at the end of July. Months earlier we had applied for some Olympic tickets and the ones that came up in the ballot were for the football at Wembley that same day. Four of us were up there for two matches and, with everything going on, we all forgot it was our anniversary! We both remembered about three days later and realised it was the first time ever that everyone in the family had forgotten. I hope that’s not the case in two years time!
Thanks for the apple cake recipe, my son says he’s going to try making it this week – will let you know how it goes.
Penbleth - Thanks Dawn, someone I met on Saturday was needing to know they were not alone in parenting a special needs child and feeling overwhelmed at times, she and I had a good talk. Later I thought someone reading might be helped to know that others feel the same.
I hope you enjoyed your trip to the football, the Olympics were fantastic. Make sure you let me know how the cake turns out and a belated happy anniversary to you and your husband.
Lynn
Wendy - Hi,
Thank you for this post. I’ve been reading your posts for quite some time (having a good laugh or cry, depending…), relieved that there’s another mother out there who struggles and isn’t perfect and doesn’t have all the answers — and has a sense of humour! I’ve never commented but I wanted you to know that I’m so grateful for your honesty… Thank you thank you thank you…
I wish I was as confident as you that this has made me a better person, though. I just don’t see that yet. Maybe I will someday. I’m still in the anger phase, I think (over her condition and the frequency/intractability of her seizures, etc.) Maybe some cake will do me good…!
All the best,
Wendy, Canada
Penbleth - Wendy, thank you so much for your comment. I am glad you get an occasional laugh, dear me, I most certainly am NOT perfect. I get crabbit and tired and fed up and annoyed over little things, I let other things slide that should be dealt with. It is easier today because today has been easier, if it hadn’t been then I would be right back in the middle of all the down feelings.
All the very best to you too and to your daughter,
Lynn
Weekend round-up. - [...] Since today was a work day and it is now late I was going to leave this post as just being a pictorial edition of The August Break, then I saw Wendy’s comment on Saturday’s post. [...]
Emily - Lynn,
Although you wrote this post a month ago, I imagine you have fits and spells of the same in cycles. Hugs and cake.
Although I’m not a mother to a child disabled or otherwise, I can empathize with you and your writing as someone who takes care of herself in the midst of multiple disabilities. Before becoming ill, I worked as a Behavioral Consultant for individuals with special needs which I sorely miss. Seizures, vomit and all. Because, even in the worst of the worst of it, there always seems to be a twinkling eye, a smile, a moment.
Like you wrote about in your post today: to be welcomed home with hugs.
For me, like you, I do allow myself these moments of seemingly utter collapse. Knowing that I’ll get back up again later or tomorrow and continue going. Because there is frivolity (yay for your new nail polish!), glitter, a photo to take, a warm mug to sip and apple cake. As I read and type, some homemade chicken soup is simmering on the stove.
While each day to day can be (and often is) awash with unknown “knowns,” it is a life that (un)fortunately not everyone is privy to understand. Sometimes I think living life knowing the things we know is a blessing and other times – AUGH.
Perhaps that’s why you take photos (a question really, not a statement). As for me, I find the gift of photography a metaphor to living a life such as this: we need, not choose, need to focus on what is most important given the nature of the contours of our lives. With photos, we can choose how we compose an image – changing the focus of the lens (of life) in a way that that allows us/me/you to SEE.
Whether others do or ever will: I just don’t know.
Know that from my own perspective, I see and understand.
xo Emily
Penbleth - Thank you Emily for this and all your lovely comments, they are very much appreciated. Those who live with their own issues or look after someone with extra needs know how this feels. The good and the draining accompanied as they are by gifts we cherish whether because or despite how we receive them. You are spot on about the photography, the focus on what is important to us, the reshaping and altering, all make certain times and images alive and give us some control as well as some perspective on our lives.