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The skin she’s in.

R is scarred from her forehead down to her toes.

Some scars are barely noticeable, a flash of red or white against her skin tone. Some are raised and pink, with the hope that they will flatten and fade over time. Then there are the deeper scars. The burn scars like thick purple rope, curling round her legs. The bumpy scars that change colour, purple to red to white according to how much exercise she does. The ortho scars, violent marks across her skin caused by drills and hammers and pins. Massive dents that are now stuck to the bone and no amount of massage will free them.

Scarred skin looks hard and sturdy but it’s not and the fragility of it terrifies me. Every infection is an invitation for the skin to break down and disappear. The skin grafts and the skin graft donor sites are equally susceptible. She’s had so many infections. So many graft breakdowns and skin failures due to infections. Loads of infections that end in -monas. A few -coccusses. Some ending in -sis.

And because we have to look for the positive we celebrate that at least the infection leads to the best possible bed on a ward – isolation room. Ah, the joys of quiet and solitude.

Every rash that appears is examined closely. Is it a heat rash? Allergy? Eczema? Infection? Every eczema flare up has to be managed and monitored. What would normally be dismissed as a bit of dry skin is instead monitored and then moisturised until it’s under control. Anti-histamines are taken even day. She has flucloxicillin ready to take in case an infection flares up over the weekend or at night.

We have drawers full of creams and ointments, all called Latin and Greek compound words that mean sod all to me. One cream for her scalp. One for her face but not her eyes. One cream for her eyes. One for her neck. One for her body and limbs. And these also terrify me. She’s covered in paraffin creams and ointments and then sent out into the world. She knows not to go near anyone smoking, to stay away from the Bunsen burners in the school labs due to the fire risk, but you can’t guard against everyone.

Be aware. Stop, drop, and roll.

I throw away clothes after a month because of the paraffin build up. I change the bedding four times a week and boil wash it all.

Then there’s the reason for the creams. We decided early on to stay away from Doctor Google. She has access to the experts in their field. Her consultants answer emails and return phone calls and explain things to us as many times as we need until it sticks. Why use Doctor Google when we can talk to the best doctors in their field?

And yet …

When she wakes up crying in pain, unable to move because her skin opened in the night and then scabbed over again, that’s when I wonder. Whether the hour I spent last night creaming her and massaging her did any good. Whether all the blood tests and allergy tests were worth it. Whether the creams are the right ones. Whether the steroid creams are damaging her skin more than helping.

If there’s a better cream out there for her.

And that’s where all my resolve to heed the experts falls down. What if, what if. What if there’s a cream that will clear up her eczema, even out her skin tone, smooth out her scars, take away the pain. I want it for her.

Got any snake oil? I’m desperate, I’ll buy it. I’ll snatch your hand off.

The papers are full of miracle skin cures. Who am I kidding, it’s the Daily bastard Mail that’s full of miracle skin cures. The day they sang the praises of some baby moisturiser, I was straight down the chemist. I could have cried when I got there and saw a huddle of others round the shelf, all of us easy marks for these PR puffs disguised as news.

But what if it works and I didn’t try it?

Today I was at the Farmer’s Market. I had a tenner. I was going to buy some meat when I saw an olive oil stall. Front and centre was their cream. Natural olive oil, beeswax, rosemary. 7 quid for a tiny tub. Of course I bought it.

Because what if it worked and I didn’t try it?

Getting through the day pain-free is hard enough for R on a good day; but when her skin flares up she can’t even get out of bed. Between my desperation buys and the prescriptions, something has to work. All natural, organic, paraffin free, paraben free. Steroids, chemicals, perfected in the lab. I don’t care. Every square inch of pain-free skin is a victory.

When Rs skin is inflamed it’s not only the pain that keeps her in bed. She hates people seeing her when her facial scars are inflamed and wants to hide away. She does go out, but she sticks to the background and that is so hard to see. Being a teenager is hard enough, and this just adds another layer of hurt and awkwardness to it.

Rs skin will never be perfect. It will struggle to even be classed as good. The real battle, the battle she fights every day, is to love and accept the skin she’s in.

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Have you tried homeopathy?

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R and I were out for lunch. When she’s had a particularly shitey week only sushi and bubble tea will make it better, so off we drove to the nearest town.

We’re sitting in itsu and eating and bickering about having to share soy sauce and who gets to decide how much wasabi goes in the soy when a woman says “oh dear, that looks horrible. Poor you.”

She wasn’t talking about the sushi. That sushi was good. The woman is looking at R.

R looks down and the blanket covering her leg has slipped. She quickly covers it up, then smiles at the woman. I’m fit to be tied and ready to jump, but we’ve discussed these situations with the psychologist and he says it’s important that R handles them, and calls me in if needed. So I sit and wait, my Rictus Grin combining with my Paddington Bear Stare and let me tell you, the effect is not attractive. Oh no.

But R is a star and implements the “Explain, Reassure, Move On” method.

“Hi, I was in an accident. I’m getting better. We’ve just come out for some sushi.”

I’m watching like a hawk for R’s secret signal. R is so damn polite that she doesn’t want to hurt people’s feelings by saying she’s too tired or needs out of a situation so we have an agreed signal. Over time she became annoyed by me asking if she’s OK or needs me so then I made a signal too. 

No signal from R. Then the woman carries on. “Are you seeing a doctor for that?”

Still no signal from R. Rictus Grin and Paddington Bear Stare are now combined with Martin Freeman Are You Fucking Kidding Me Face.  R’s Martin Freeman Face Game is strong too as she replies,”Yes, he’s very good and pleased with how it’s going. He doesn’t think it looks horrible. I need to eat my lunch before it gets cold.”

Ooh, sarcy  R.  She’s eating sushi. But her sarcasm was delivered with Explain, reassure, move on and a smile. Then the woman says,

“Have you tried homeopathy or reiki?”

Now. R’s legs are scarred from hip to ankle. One of them is purple. Oh yes, and huge external titanium frame holding one of her legs together. Ffs.

The secret signals are flying by now. I want to jump in, R’s telling me to sit, I’m getting more emphatic, R’s holding her ground. We looked like extreme tai chi practitioners.

R cuts me off and shifts in her wheelchair so her leg is well out of sight of the woman. “No we haven’t tried homeopathy. We do science. Now I’m not allowed to be rude to an adult but …” and then just turns her back and carries on eating.

I’m absolutely bloody DESPERATE to say something to this woman but I don’t want to stomp all over R’s full stop to the conversation. I follow R’s lead but no lie IT’S KILLING ME and the two of us carry on eating sushi.  Eventually the woman takes the hint and goes away.

I don’t mind people looking. It is shocking, and the psych doc has explained why people look and how to handle it when they do. I don’t mind people commenting. I know it’s a way to express empathy and to acknowledge what she’s going through. But I wish some people would think about the language they use.  “Poor” and “horrible” and “awful” aren’t positive words and don’t help R’s mood. The wee old wummin that nodded at R and said, “Good girl, it will be worth it on the end” in the queue at fabric shop cheered her up for that day.

R goes for the soy.

“Are you mad at me, mum?”

“No! I’m proud of you. You weren’t rude, you were polite twice when she didn’t deserve it, and then you removed yourself from the situation.”

“OK. Thanks. Can I have the rest of the maki?”

“Course”

“Thanks.”

And finally she smiles. 

Mother’s Day is different this year.

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This past year has been some year.

This past year marked me becoming older than my Mum ever was, and living longer without her than I ever did with her. This time is all time that she never had.

I’m a different mother this Mother’s Day than I was last year. Everything is different this year.

Everything pre-accident seems unreal. Facebook memories keeps  showing me old pictures that I don’t know if we’ll ever be able to recreate. R standing on my shoulders in the garden. R lying flat on her stomach, face pressed against the floor on the first day of school, joking that she wasn’t going. But they’re only pictures, I concentrate on the fact that we still have R here. She’s so tall now that there’s no way she could stand on my shoulders anyway – I’d buckle. Nostalgia has to be tempered with reality, or I’d waste my day with sadness and what ifs.

I’ve spent a lot of time with R since the accident. Six weeks in hospital and six months at home. I like me and I couldn’t even spend that much time with me. She’s just cracking on, putting up with the physio, the 14 operations, the skin debridement, the whole works – and putting up with me.

We’re actually happier this year than we were last. We’re a bloody cliché but I don’t care. We appreciate more, want less, and don’t take anything for granted. It’s not Pollyannaland though. It’s been a shite seven months, and it’s not over yet. We have no option but to keep battling through.

Today we’ve drank tea, sat on the couch watching Old Hollywood films and just been lazy.  What a great day.

I’m a different mother this year and it’s because of my daughter. I feel very, very fortunate.

Being positive about not dying is going to kill me.

I have many unattractive qualities. I like eating Maltesers in bed. I have a tendency to gross untidiness. My foul language would lead to a docker high-fiving me with pride. The one unattractive quality I hate, and that has crippled me at times, is excessive worrying.

I’ve managed to mask it and build up little coping mechanisms. One is – don’t bloody tell anyone. Some of the worries are so ridiculous I don’t even give them voice. Instead they fester in my head until logic finally kicks in and I realise how stupid they are.

Another way is just get rid of them with sense. My friends are used to me disappearing for ten minutes whenever we go to a new pub or club – scoping out the toilets, the fire escapes, how busy it is. Once that’s done, I can relax a bit.

Japan was a fucking laugh and a half for worries. Number one was Earthquakes. That was numbers one through ten actually.

All my worries disappeared three months ago. Out of nowhere something I had never worried about, had never even given a second thought, malfunctioned and nearly killed us all.

I had no time for worry or panic in the immediate aftermath. All I could think about was getting to R. Once I was with R I just wanted to be calm so as not to worry her. I knew how close I had come to dying – I remember a thought in my head saying, “Get up; if you stay down, you die” – and seeing R I knew she wasn’t completely safe yet. So we sat and I kept her awake and joked about my burnt hair and to all the people watching we must have looked insane as we smiled and laughed as if this was how we spent a normal day.

And I’m thinking, Stop shaking darlin please stop shaking R that’s shock and shock’s bad. You can be shocked but don’t be in shock. Look at me darlin, look at me talk to me.

I had no time for worry and panic when the emergency services turned up. I knew for a fact that freaky screamy me would not be allowed to stay with R, and the only thing I wanted at that moment was to stay with R, so I was calm. And because I was calm I knew I had to get out of the cramped space we were in to let the paramedics in to treat her. And I knew if I went to the hospital with her it meant I was bumping a very highly trained medic. So I had to let her go to the hospital without me.

And I’m smiling and I’m promising her I’ll see her soon and she just waves and says, OK, bye mum! and the pain relief has her off her head and I’m so happy because she isn’t in pain but fucking devastated so just do as I’m told and get on the heart monitor and put on the oxygen mask and get in the ambulance and wonder when the hell they wrapped my legs in clingfilm because I can’t remember it.

I had no time for worry or panic at the hospital because I just wanted to get checked out and to get to R. So I let them do their X rays and their scans. They kept finding other things to bandage and scan and scope. A nurse said to me, “Oh dear, you’ve had a bad day, haven’t you?” and all I could say was,” No, this is the best day of our lives. We all lived.” I even surprised myself; worrier, negative, moany, me believed it with all my heart. I still do.

C came to the hospital with me but he went straight to R when we arrived at the hospital. We all met up at Xray. What a crew we must have looked. R and I covered in black soot. Our hair singed off. Both of us with our burns covered in clingfilm. C and R both on trolleys because neither could walk. All of our clothes burned, fallen, or cut off. But we were all still here.

I still haven’t had time to be anything but positive. Keep positive when R nearly lost her foot. Keep positive when they saved the foot but then thought she’d lose her leg. Relax when they saved both. Keep positive when the skin grafts failed. Keep positive when her wounds went chronic. Relax when there was a slight improvement.

To worry and panic now seems almost rude. To worry and panic keeps me away from sitting with R playing scrabble. It stops me enjoying the time spent coorying in together as she draws. It fogs my brain as I try and write down all the questions for her team of doctors (She has 8 consultants. They are all lovely and brilliant but Christ even remembering their names stretches me. And that’s the least I can do seeing as these are the people we’re relying upon to get her walking and burns manageable. Oh, and saving her life as well.)

Worry and panic would stop me remembering all her physio and pharmacological regime, and that’s what I need to remember because they won’t let me keep her at home without it. It would stop me sitting beside her, marvelling as she screams with laughter at Parks & Recreation, or the two of us lying in her hospital bed and waving our arms in the air at our midnight raves to Taylor Swift and Fall Out Boy.

The nurses complement us on how calm we all are and how we keep our heads and our sense of humour but ffs I feel like a big old fake because how do you deal with this. I’m one piece of bad news away from unravelling but maybe I’m not. Maybe I’m one of those people that’s good in a crisis but shite at normal life.

We’re still here. We’re smiling and happy and looking to the future.

R laughs at me when I push the rocking chair up against the bed as a makeshift barrier when I say goodnight to her.

“Really mum, really? You’re worried about me falling out of bed?”

I’m allowed one little worry.

A scar and a message.

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(I just found this in drafts. It was supposed to be posted at the beginning of August )

R didn’t have the easiest of entrances into the world. When she finally arrived after a lot of intervention her head and face was cut and bruised and swollen.

The bruises faded, the swelling went down, and the cuts healed. The worst cut left a scar, a huge frown shape carved into the top of her head.

Our family only makes bald babies and then bald children. Our shelves are full of pictures of kids starting school with not a hair on their heads. Until R was five this scar was seen every day, but then her hair grew and covered it, and everyone forgot.

She’s 13 next week. The bald baby has long hair to her waist. For her birthday she asked me to make her a bag to carry her drawing equipment.

So I made her the bag. Underneath one of the seams I wrote a message for her. No one will ever see it but it’s there. No one knows where it is.

A scar and a message. Both only known and remembered by me.

I can’t sleep

Three in the morning is a wee fucker.

Two in the morning, not so much. You can pretend it’s a late night; a little extravagance. As those hands sweep round the clock, nearer and nearer to three then you can’t lie any more – three in the morning is full blown “I can’t sleep.”

It’s not nice. Three in the morning gambols round the inside of your head, searching for all those thoughts that you’ve been hiding and pulling them out for you. The tasteless joke that you told is waved in your face, the hurt expression of a friend replayed over and over again. The time when you thought you looked lovely at a party, but then saw a photograph and you looked like something that had been dug up and reanimated. The screw up at work. The parenting failure. Three in the morning loves dragging those out. You’re never clever enough, never funny enough, never good enough for three in the morning.

Three in the morning loves mistakes. Can’t get enough of them. “Do you remember the time you thought it would be a good idea to do this?” it crows. It loves setting out all your mistakes in front of you, showing them off like precious diamonds. All the while you lie there and feel your stomach contract and your cheeks burn. Three in the morning loves failure.

Three in the morning doesn’t give a shit about successes either. It enjoys playing “What if …?”. What if that scan had came back positive? What if that van hadn’t swerved and missed the car? Then it sits back and watches you as the scenarios in your head become a waking nightmare.

So you lie there, praying that the thoughts in your head become the nonsensical jumble that means sleep is on the way. That three in the morning will piss off out of your head. That it won’t come back.

Three in the morning is a wee fucker.

Cartwheels now mean goodbye

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It started raining as we left her service. Not just a gentle pitter-patter either; this was full on, “Shit, where did we park the ark” rainfall. Coats and cardigans were raised above our heads as we ran to take cover.

We laughed as we looked behind us, a fast moving flock of black filling the space. We laughed as a release, “Typical J!” someone said, as if that gave the rain a meaning. The whole service was everyone struggling to find a meaning and failing as we knew we would. There was no meaning in this, nothing could make it feel better. We just came together to say goodbye.

We all knew a different side of her. Her friends told stories about nights out with drag queens, about champagne and shoes. Her work colleagues told stories of a woman who smashed sales targets in a male dominated industry and organised team building events for her colleagues that really did build teams. Her mum and dad knew a daughter, her brothers a sister.

Her girls didn’t come to the funeral but arrived at the reception at the hotel afterwards – two whirlwinds in black and pink, smashing through the room, their presence announced by half-sobs and intakes of breath from people as they saw her daughters. The girls ignored us adults and barrelled into R, jumping into her, grabbing her arms, not looking at anyone as they collected her up and then the three of them disappeared out of the double doors at the end of the room and onto the lawns.

They disappeared up trees, through fences, into bushes. “Come and explore!” they shouted. The spell was broken. The mood lifted. We sat on the hotel verandah like we did on the sand dunes and watched the three girls as they reminded us of other days with their mum and aunty.

“Isn’t Gee like her mum?”
“Oh no, Ell isn’t allowed to eat that, her mum didn’t allow it”
“R was as tall as her, did you know that?”

And then the girls started to do cartwheels.