Food Allergy & Intolerance Week runs from 23rd to 29th January and is looking to raise awareness not just of the physical effects of these conditions, but the social impact they have. Allergy UK will be providing help and support throughout the week for the millions of sufferers in the UK.
Mum has asked me to write something relevant for Food Allergy and Intolerance Week, the only stipulation being that it had to be different to her post!
I have decided that, instead of writing about how the kids’ lives are affected by Bob’s food allergies (which mum does regularly anyway); I would write a completely and utterly selfish post about how my life has been affected by them. First of all, I want to point out that I love my kids, they are my whole world, and I would walk to the ends of the earth and back to make them happy. The only thing I would change, if I could, would be to make Bob a normal, healthy 5-year-old (oh, and possibly make us a little bit richer……..), however, I can’t do that, and all that I can do is try to make his life as easy as possible for him. So, this is my story.
I have a friend, who lives round the corner from me. She has a normal family, husband, two kids (roughly ages with mine), dog, car, etc. She drops her kids off at school at 9.00am every morning, and her time is her own until 3.00pm, to do with what she will. She and her husband go out for the occasional evening, to the pictures, or the pub, leaving the kids with a babysitter. She does her weekly shopping at the supermarket, takes the kids out for dinner once in a while, takes the kids to their various after school activities, drops them off at birthday parties. Pretty much a normal existence for a mum, and probably the same sort of life as 99.9% of mums out there.
I drop the kids off at school at 9.00am ( Bob only goes three mornings a week, currently), and then sit on a knife-edge, waiting for the phone call from school to tell me something has happened to Bob, or he’s been sick, or he’s got a funny rash, or he’s in floods of tears, and will you pick him up please?, until 12.15, when I go to collect him from school. That’s 3 hours, 3 days a week, in which to get anything done I need to get done, shopping, housework, take the car to the garage, get that important form filled in that should have been done a fortnight ago, etc. The other mums arrange the occasional lunch out, or coffee in town, and I can never go, as I don’t have the time.
A trip to the supermarket takes hours, I have to read every label on every item I pick up (I even read the label on the milk carton the other day – you’d be surprised to learn that it contains milk!), and one supermarket isn’t enough. Bob’s yoghurts and rolls come from Asda, his pasta, biscuits, chicken nuggets, sausages from Sainsburys, bread from Morrisons, cheese from a little health store, egg replacer from another health store. In a normal week, I visit at least two supermarkets, sometimes more. Bobs food also costs a fortune – for instance, his rolls are £2.08 for four, they are tiny, and he eats two at a sitting. If I run out of something, I can’t just nip across the road to the corner shop to top up; it’s another trip out to the supermarket. There are lots of things that I just can’t get locally, and have to order online, which costs even more, due to delivery costs.
If I want to go out anywhere, I have to make sure I can leave the kids with my sister, or the one friend who is willing to look after Bob, or wait until a Monday night when the kids stay at mums, I can’t just leave Bob with a baby-sitter. This means that, most of the time, if I get invited out, I have to turn down the invitation, as I just can’t arrange childcare, which means, in turn, that people stop inviting me, because I can never go.
If Bob gets an invitation to a birthday party, I have to stay with him (and spend the whole time panicking); as I can’t expect someone else’s mum to look after him, and make sure he is safe, in the middle of the insanity that kids’ parties always turn into. This means that I have become one of those parents, who normally turns up at a party with an extra child in tow, as I can’t leave Bob at the party, and can’t really leave Fifi in the house, or the car, on her own (tempting though it is, I’m sure it’s illegal!). I also have to take along his own food and drink, after discussing with the parents what other food they are putting on, so that he has roughly the same as the others. There are other parties that I just say a flat out no to – there is no way I can take him to a make your own pizza party for instance.
I can’t just turn up on a friend’s doorstep for coffee without planning it first – what if their kids had peanut butter sandwiches for lunch? Or they are sitting eating chocolate cake?
I have to fill in countless forms, for school, hospitals, doctors, out of school activities, etc., all saying different variations of the same things, and, every time something changes, they all need to be filled in again.
I know the best route to every hospital in the area (and the locations of hospitals all over the country, from John O’Groats to (almost) Lands End), which ones sell the best coffee, and the one that sells the instant that smells like it’s been stored in the porters dirty socks for a week. I have loose change stored permanently in the car, so that I can get something to eat and drink when Bob gets admitted to hospital, and can throw together an overnight bag for the two of us in less time than it takes an ambulance to arrive at mine. I have arrangements made with a few friends which mean that I can drop Fifi off at any time of the night or day if I have to rush Bob into hospital, and have been known to turn up on someone’s doorstep at 1.30am, with Fifi still in jammies, and almost asleep, to launch her out of the car and wheel spin away.
I have minor panic attacks if the car has less than a quarter of a tank of fuel – I know that a quarter of a tank is enough to cope if Bob is in hospital for a day or two, and, if the car shows any sign of something being not quite right, it is whisked away to be fixed, just in case. (I have a recurring nightmare that Bob gets really ill and the car won’t start.)
I have really strict rules about food in the house – no food or drink in the front room, no nuts in the house at all, and for crying out loud, be careful with that milk! The kitchen sides and table get washed down in a certain way after every use, the floor is hoovered after every meal, pots and pans are washed in a specific order, and any plate or bowl with milk or egg products is rinsed before it’s loaded into the dishwasher. I have separate cupboards, and a fridge and freezer for Bob’s stuff, to reduce the risk of cross contamination. If there is anything spilled on the floor, it is wiped up, washed down, and then mopped straight away. Any child that eats in my house gets scrubbed afterwards, and small children just get given Bob-safe food to make my life easier!
There are very few convenience type foods that are safe for Bob to eat, so the majority of meals in this house have to be cooked from scratch. There are not many sauces that are safe for Bob either, Spaghetti Bolognese is so much easier, cheaper, and quicker when you can open a jar of Bolognese sauce and throw it in the pan. I like us all to be able to sit down for the same meal, as much as possible, but that often means I have two pans of pasta to cook (one lot for Bob, one for everyone else), or separate oven trays, and sometimes even separate ovens.
Days out have to be planned meticulously – food and drinks have to be taken with us, wipes to clean surfaces before Bob touches them, the location of the nearest hospital noted, medication taken if we are going to be out when they are due, a buggy squeezed into the boot for when he gets tired, a change of clothes just in case they are needed – there is no “Let’s just jump in the car and see where we end up” anymore. Holidays are even worse – it has to be self catering, and the place is inspected with a fine tooth comb when we get there – I once found grated cheese on the floor of our caravan. The car is loaded with more drugs than the local pharmacy, Bobs own bedding is packed, sometimes I think shoving wheels on the house would be easier!
And then there are the other, random, unimportant things that I lie awake and worry about, for instance Bob now weighs just over 16kgs, his buggy (which he needs when he gets too tired to walk, or his asthma is bothering him) is designed to hold up to 15kgs, as are most of them. It’s now starting to look as though it’s going to fall apart (although for a £5 sale buggy, it’s lasted about two years), but where do I get another one? I know I can buy one for disabled kids, but is it worth spending all that money on something that is probably not going to fit in the boot of the car, and not get used that much? I can’t buy a second hand one, as who knows what’s been spilt on it.
So there you go, a little bit about me and my life. It sounds bad, and there are days where I wake up, realise I’ve got to get Bob to two hospitals that day, and have to manage to collect Fifi from school, and get to the shops, and I want to roll over, bury my head, and block out the world, but Bob wanders in, climbs into bed, and gives me a kiss and cuddle, tells me he loves me, and begs for breakfast, and I know things will be fine.
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