Some people say that the internet community is not really composed of actual friends. I always felt that wasn’t true, and now, after yesterday’s experience, I know it.
I’ll admit I was fragile yesterday. I know if I had reached out into my physical locality, I would have found love and support from my ‘real’ friends, but I actually couldn’t face facing people, if you know what I mean.
So I poured it all out here, and you rallied round. It was amazing, and humbling. Something I am grateful for, and will never forget.
But what you really want to know is, how is Carys?
Well, she is a little star! Daddy brought her home about 1pm. She looked like she’d been in a war zone, she was covered in blood, and I mean, it was everywhere! But she smiled, she ate and drank, took her meds, played, interacted and was completely and utterly charming, as if nothing had ever happened.
But wait till you hear what they did to her! Removed 9 baby teeth, because they were obstructing her adult teeth and preventing them from coming down; four fillings, and snipped the skin flap which joins her bottom lip to her gums, because it was too small and tight.
Poor little girl!
Anyway, thank you for all your kindness, support, caring comments and love for Carys. Have a great weekend, everyone. xxx
It’s 630 in the morning, and outside, the sky is dark, but not so black as my mood. Carys is on her way to the children’s hospital in Dublin, and I’m sitting here, chain-drinking coffee while my heart breaks.
It’s only dental work, but it’s never ‘only’ something for children like Carys. There’s no way she’s going to let a dentist look in her mouth, or go anywhere near her, thank you very much.
A year ago, it took five of us to hold her down while a dentist gave her some temporary fillings. No needles or drills involved. It was a traumatic experience for everyone involved, not least poor Carys herself, who has absolutely no comprehension of why we’re doing that to her, except that it’s bound to be something she’s not going to like. Or hurt her.
So today, she will be having a general anaesthetic, and I’m scared, really scared. GA always carries a risk, but for Carys, with her bloated fragile heart, it’s a very serious risk, and I’m terrified she won’t wake up.
I know she will have an excellent anaesthetist. I know he will have read her file. I suspect her cardiologist will have been consulted. I know she is in good hands.
But she’s out of mine. My hands have always held her, but not today. I am home with my boys, and Carys is with her Daddy, and I am riddled with guilt. I can’t leave the boys here on their own, but I should be with Carys and Conor.
Yesterday, I was in such a state with this hanging over me, that my youngest son asked me why I was so angry and doing so much cleaning. Sounds funny, right? Conor said it would probably be best if he took her to the hospital.
Carys is always calmer with her Daddy. She’s a Daddy’s girl. She sleeps in his arms. I do the feeding and the nappies and the hair-washing and the therapies. I do the activities, the work and the fun stuff. With him, she feels safe and relaxed. I am in a stressed and emotional state. Today, I am not Carys’s best advocate.
I know this, but still I feel guilty. Not only am I not there for Carys, but I am not there for Conor. He will have to make that long walk down the corridor to the operating theatre with Carys in his arms, alone. I have condemned him to hold Carys while they administer the first drug which puts her to sleep.
If you have ever had to hold your child while this is done, you will know it feels like watching them die.
And then, while you are still in this extreme condition of terror and bemusement, they snatch her out of your arms and manhandle you out the room too quickly for your mind to register what just happened.
To wait, while some butcher takes a knife, or in this case a drill, to your precious baby.
Of course, they’re not butchers, they are life-saving angels, and two of my children are alive and well thanks to these very special people. Words can never convey such gratitude. ‘Just doing my job, ma’am.’ They really think it’s just a job.
Last time we went through this, Carys was only four months old, and she had a complex surgery to remove her haemangioma. It took four hours, and I remember sitting on her hospital bed, waiting, holding her blanket to my face and breathing in her baby scent. I remember how helpless and desolate I felt.
Today’s procedure is only a short one in comparison. But I’ll still feel the same. The risks are just as great. Conor is on his own in Dublin, and I am alone here. And we’re waiting. Just waiting. And hoping. And while Conor is being a good parent, I’m feeling like a bad one, because I’m too weak and too selfish to be there in his place.
And I’m so afraid that she won’t wake up. That her weak heart can’t cope. That after everything we have been through together in the last ten years, we could still lose her.
I’ll let you know how it goes.
And please, if you want to leave a comment, say anything at all but not what a good mother I am. I can’t handle that today.
My tree does not have an angel on top. No, what it has is a rather plain, very slightly sparkly silver star.
But it does have angels on it. Four of them. These smiley faces belong to the angels on my tree.
Their names are Craig, Jacob, Brody and Charlie. They had the same syndrome that my Carys has, and in just over a year, they all earned their angel wings. I got to know them through their lovely, brave mothers on facebook. Their lives were short and bittersweet, but full of love, and in that time they taught us so much. I can’t believe they’re gone. RIP little lovelies. Gone, but NOT forgotten.
This post is part of Hugh’s Charity Christmas Topper Photo Challenge. Hugh will donate £1 to The Dogs Trust for every Christmas Tree Topper photo that is posted here on Planet Blog up to a maximum of £250. The challenge is open until Tuesday 5th January 2016 and he will publish a post on Twelfth Night, January 6th, showcasing everybody who participated in the challenge and letting you all know how much we all managed to raise.
If you want to participate and help Hugh raise £250 for The Dogs Trust, here is what you have to do;
1. Take a photo of what sits on top of your Christmas tree. 2. Create a new post on your blog entitled “Hugh’s Photo Challenge: Week 8 – Charity Christmas Tree Topper Challenge.” 3. Add the photo(s) you have taken to the post and tell us a little about what you are showing. 4. Create a pingback to his original post or leave a link to your post in the comments section of his original post so that other participants can view your post.
Happy Christmas, everyone! Only one more sleep to go…
I watch my children launch themselves gleefully at the pile of presents under the tree, but take no pleasure in their joy. My heart feels cold and hard as a stone, and the bitter taste of guilt catches and won’t wash away in the back of my throat.
Sarah is the oldest. Always the thoughtful one, she organises her younger sister to sort the parcels into three piles, one for each of them. It’s meagre pickings, I think dismally, but they don’t seem to notice. Caitlin normally resents Sarah’s bossiness, but on this occasion normal hostilities have been temporarily cast aside. Jojo, not even a year old, crawls happily through the chaos, more absorbed in the crunch and rustle of the bright paper than what it conceals.
My brave bold trio, who already in their short lives have seen a side of it no child should have to witness. I won’t have their childhood stolen away from them, I just won’t.
I pull Jojo onto my lap. She wriggles, trying to free herself.
“Girls,” I say. “Open some pressies for your little sister.”
They show her how to tear the paper, and she cottons on quick, squealing with delight, shredding the paper and mashing it into a squidgy mess with damp, pudgy hands.
When all the secrets have been revealed, it is Sarah who comes to me with a hug. I am surprised to see sadness in her eyes.
“But Mammy,” she says solemnly. “There’s nothing here for you.”
I gulp back the lump which has formed in my throat, and force a cheery smile. “Santy only brings presents for the children, didn’t you know that? Anyway, your Nana will be over later, and she will have a little something for all of us.”
“Hooray, more pressies,” whoops Caitlin, who has overheard, and Sarah rolls her eyes.
“You’re so materialistic,” she says smugly, and I stifle a grin as she stumbles over the unfamiliar word, my first genuine smile of the day.
I set Jojo back down, and go to the kitchen to prepare breakfast. The window is a black square; it is still early, but I can see lights twinkling vaguely in the windows of some of the neighbouring houses, and know that inside, the same ritual will be playing out, only without the guilt.
I lean on the worktop as panic overwhelms me. I am gasping for breath, my heart hammering so hard, that for a moment, I fear a heart attack.
It was the worst thing I have ever done, and I will never forgive myself, but if I have to, I will do it again. For my girls.
“Is Dad coming today?” Sarah is standing in the doorway, clutching her new Barbie. Of the three of them, she was always closest to her Dad, and his leaving hurt her the most. He hadn’t even said good bye. Just woke up one morning a couple of months ago and said he’d had enough, walked out the door as casual as if he was heading to Tesco.
I can’t say it surprised me. He’d threatened it many times, but I never believed he was strong enough or desperate enough to see it through. And at first, I just felt… relieved. No more rows, no more accusations, no drunken violence. To be fair, all of that only started after he was laid off the previous year, and couldn’t find work. I’d thought we’d muddle through, that love would lift us up above all that. Of course, I was wrong. Everything always comes down to money in the end.
Then the relief faded and reality kicked in; Christmas was coming, I had no man, no money, and no one to turn to for help. But I was fiercely determined to make Christmas special for my girls.
I sold my wedding ring, paid the gas and electricity bills, and bought a frozen chicken and a Christmas pud. The girls wouldn’t notice the difference between a turkey and a chicken. They probably wouldn’t even eat the pud, but Christmas wouldn’t be Christmas without one. That left precious little for gifts.
Nevertheless, I was drawn to Toys R Us, even though I couldn’t afford to buy anything. I drifted up and down the aisles like a ghost with big, hungry eyes. Sarah wanted the latest Barbie. And there she was, the last one on the shelf. I gazed at her longingly. She was beautiful, layers of puffy princess-pink organza wrapping her svelte tanned form, an impossible confection of overblown feminine perfection smiling blankly from the chaste prison of her box. I reached towards her.
“Excuse me.” An arm snaked past me and snatched the doll from the shelf. Outraged, I turned to glare at the thief. It shouldn’t have mattered; I couldn’t afford it anyway, but for a few moments, in my head, that doll was Sarah’s.
A woman in a grey coat with a fur collar and very pink lipstick deposited the Barbie on the summit of a mountain of toys in a shopping trolley, and wheeled it past me. It was full of girl toys, all the things I would have bought my daughters, if I could. Next to Barbie nestled Frozen’s Elsa, which had been top of Caitlin’s wish list. Tears stung my eyes.
I rushed out the store, mind in a turmoil. What was I going to do? My head ached, and I leaned against the cool shop window, thoughts fluttering as wildly as my heart, searching desperately for inspiration.
When the woman in the grey coat emerged with her purchases all bagged up in the trolley, I followed her. I didn’t know what I was going to do. I didn’t have a plan. I was just obsessed with the over-indulgence of her shopping spree, and the unfairness of it all. Her daughters were getting too much, while mine were getting nothing at all.
She had parked in a far corner of the car park beside a crumbling brick wall. Badly, I noticed contemptuously, as the wheels of her car protruded into the neighbouring space. I lurked behind a big four wheel drive, watching. Tall whispering evergreens shielded us from the main road beyond.
There was no alarm on her car. She piled the bags in and locked up, pushed her trolley back to the store, and then headed towards TK Maxx.
As if you haven’t spent enough, you bitch, I thought, made irrational with jealousy.
In that moment, my passions consumed me; anger at my husband for abandoning us, fury at my helplessness, jealousy of this woman’s affluence, fear of my children’s disappointment on Christmas morning, repugnance at my inability to provide for them.
These terrible, powerful emotions took control, they moulded me into the shape of someone I barely recognised, an aspect of myself I abhorred, but did not resist. I thought of my daughters’ happy smiling faces, and that was all the motive I needed.
I worked a brick loose from the wall, and hurled it as hard as I could at the passenger door window, more from rage than anything else. The glass shattered. I didn’t expect it to, but it did. I knocked some of the shards out till the hole was big enough to fit my arm through, then reached in and unlocked the door. It clicked open.
I stared at the treasure inside in disbelief. It couldn’t be that easy. But it was.
I didn’t take everything; I couldn’t completely destroy their Christmas. I just grabbed two bags and ran, hoping one of them contained Barbie and Elsa. When I got home and emptied them onto my bed, there they were, glorious and bright and beautiful.
But as I wrapped them, my hands trembled, and with the adrenaline gone, feelings of self-loathing began to push at the boundaries of my mind.
Dad does not come, but Nana does. The girls jump on her immediately, and give her no peace until she laughingly hands out her gifts.
“Where’s Pete?” she asks, looking around and noting his absence. “I bought him a book. Does he know how to read?”
“Mam, don’t,” I protest, and burst into tears.
She wraps me in her arms for a moment. “I’m sorry love. But he does wind me up, the way he treats you sometimes.”
I push her away and retreat to the kitchen. The chicken is roasting, pots bubbling away on the stove, giving the false impression that I am in control. The window is lined softly with steam, whilst outside a grey sky drizzles relentlessly.
“He’s gone,” I say, and the whole story comes out, a torrent which cannot be dammed. Only when the flood has abated am I able to stop and sip at the mug of hot, sweet tea Mam places in my pale, shaking hands.
“Oh love, why didn’t you tell me all this before? I could have helped. You’re not alone, you know.”
“You’re a pensioner, Mam, struggling as it is. I couldn’t burden you with my problems too.”
“I know. There’s nothing I can do about it now. I can’t give them back. I have no idea who she is.”
“If I ever get my hands on that rotten good-for-nothing husband of yours…”
“Stop it, Mam. He’s still their father.”
“I know. He doesn’t deserve them. Or you.”
Our conversation is interrupted by the ring of the doorbell.
“Daddy,” shriek the girls, rushing to answer.
“Talk of the devil,” Mam mutters darkly.
But it isn’t Pete. Two tall policemen fill the doorway. I feel so weak, I think I will faint. The girls gaze up at them shyly, clutching the evidence. Behind me, I hear Mam’s sharp intake of breath, and am aware of her scooping Jojo off the floor.
My heart sinks. CCTV. The car park must have CCTV.
“You’d better come in,” I say, leading the way back into the kitchen. “Mam, make another pot of tea, will you please?”
“Sorry to do this to you, Sue, today of all days, but we’ve got Pete again. He’s in the nick now, drunk as a skunk,” says the elder of the two.
I sit down quickly, before my legs give way. So they haven’t come for me after all. I let out a long, shaky breath.
“He walked out on us, about two months ago, Ed. Haven’t seen or heard from him since.” How many times has this happened in the last year? So often, I’m on first name terms with the local coppers.
He left, I say to myself. He is no longer my responsibility.
“You’ll want to come and get him,” Ed replies, taking something out of his pocket and laying it in the middle of the table. A little square of paper.
“It’s a lottery ticket,” bursts out the younger officer, face pink with excitement. “That’s why he’s so drunk; he’s been celebrating. He’s only gone and won the lottery!”
Ed scowls at him, but then directs a smile at me. “It’s true. We checked. I know that man has taken you to hell and back over the last couple of years, but he’s asking for you and the kids. Maybe he can finally clean up his act, with your help.”
I can’t speak.
“Do it for the girls.” Mam’s voice comes out as a croak.
But I can’t, even for them. They are my life, yet I will not be bought. I have hit rock bottom and committed a crime. I won’t make things worse. I won’t condemn them to a life with a drunk and aggressive father.
“What will happen if I don’t help him?”
Ed shrugs. “He’ll get turfed out when he’s sober, cash in his winnings, and use them to drink himself to death most likely.”
There is a sob from the kitchen door. It is Sarah.
“Mammy, is Dad dead?”
“No darling,” I soothe, opening my arms and enfolding her. “He’s just not very well, that’s all.”
“We can look after him,” she says, wiping her eyes, and pulling away to look at me hopefully.
Ed clears his throat. I know what he’s thinking; the money will make everything better. “It’s a considerable sum,” he says.
I level a cool stare at him. “I married Pete for love, not money. He was the one who let money come between us. Keep the ticket. We don’t want it.”
“Susan, no,” gasps my mother, but my mind is made up.
The two men gape at each other. Raw, ugly greed darkens their features as they weigh up my offer. Ed pockets the ticket.
“What ticket? I don’t know what you’re talking about,” he says, getting stiffly to his feet.
I shrug on my coat and kiss the girls. “I’ll be back soon,” I say to Mam. “Take the chicken out of the oven at three.”
I hold my head high as I step out the door, fully aware of all the neighbours’ curtain twitching.
As we leave, Ed ruffles Sarah’s hair and winks. “All I wanted for Christmas was the day off.”
“I asked Santy for my Daddy back. I’d rather have him than a hundred Barbies,” she announces.
“The big man was obviously listening.”
She nods solemnly. “I’ve been very, very good.”
He looks uncomfortable, can’t meet her steady gaze. “Well, that’s more than can be said for the rest of us.” Then he follows me into the police car.
It’s not that I don’t trust you. It’s not that I think you won’t take proper care of her, or that I think I’m a better parent than you. It’s nothing arrogant like that at all.
But there is a lot of potential for things to go wrong. In particular, Carys could go into heart failure at any time. It’s a fact we have to live with, although to look at her, so robust and full of life, you would never think so.
She also has a tendency to stop breathing when she coughs, or a little bit of food lodges in her throat, or she takes too big a swig of juice, because her little system is too weak to cough up effectively.
I know that you are just as capable as me in dealing with situations like that. Every parent knows what to do when a child coughs or chokes. Every adult knows when they need to call an ambulance for events they cannot deal with themselves.
So that’s not it either.
My friends are precious to me, because I know I am not an easy person to be a friend of. I’m a bit of a loner, I spend a lot of time tapping away at my computer or visiting ancient piles of stones in the middle of nowhere, when I could be socialising.
Or Carys is sick, or like now with the Wilbargar Therapressure, going through something which can’t easily be managed outside of the home.
My friends are precious to me, because I have no family around to help out when things get tough or I’m not coping very well. I know I lean on you quite a lot at times.
But still I don’t ask for you to mind Carys.
The reason for that is something I feel sure many other parents of children with special needs will understand. It’s because my friends are precious to me that I won’t let you mind Carys.
Maybe that doesn’t make sense… I mean, who can I trust more than my nearest, dearest friends? But it’s not about trust. The thing is, I don’t want to lose any of you.
If you minded Carys for me, and something went wrong, I know that you would never forgive yourself, even if I did, because that’s the kind of person you are, and that’s one of the reasons I love you for.
And even though I know what the risks are with Carys, and even though I know you would have done everything humanly possible for her, there would still be a nagging doubt in the back of my mind, a doubt I would not want to acknowledge, but which would gnaw away at me from it’s little dark corner forever.
You would feel guilty, and I would too; for leaving her just so I could go and have fun, and for putting someone I care about in such a horrendous position.
I don’t want to do that to us. I value my friends, and don’t want anything to come between us. And that’s why I won’t let you mind Carys.
I hate that word. Not that there’s anything particularly wrong with it as a word in itself. It’s just that, when applied to people, it’s so negative and judgemental. I mean, is it just me? When did it become good and proper and acceptable to define people by what they can’t do, by what they’re not? We don’t apply that concept to any other section of society.
Here is a definition of the word ‘disabled’ according to the Oxford Dictionary;
(Of a person) having a physical or mental condition that limits their movements, senses, or activities.
Really? Is that all they are, persons limited by their conditions?
Ok, we know that children and adults like Carys are different from the majority, and we have to have a way of referring to them. Don’t we? Because we like labels; they make things nice and clear, and everyone knows where they stand.
Well, this may come as a bit of a surprise to some, but my daughter Carys is NOT disabled. I don’t define her by labels, especially not negative ones. She’s not a cripple because she’s in a wheelchair. She’s not a mute because she doesn’t talk. And she’s certainly not ‘slow’, or a retard because of her mental abilities.
The first time I heard the R-word applied to Carys, I was shocked. I had honestly never perceived her in that way since the day she was born. It shocked me even more that said assessment came from the mouth of a friend. The second time I heard it, I was better able to handle it. (In a firm but polite manner.) The R-word has been denounced and rejected by society, and rightly so.
I don’t like the term ‘special needs’ either. Her needs are not special, they are the same as everyone else’s, to love and be loved, to be nurtured, kept safe, have access to food and toys, a roof over her head, education, to be accepted.
I have heard people saying of her to their children, ‘We have to take care of Carys, she’s special.’ Well yes, she is, but no more special than all our children. I know this is meant well, but have you ever had to explain to your five year old why its Ok for a certain person in his class to pull his hair, because teacher said she (the person who did it) is ‘special’? I have. Not only is that wrong on the teacher’s part, but it is not an excuse for bad behaviour.
I define Carys by what she CAN do; in spite of all her challenges, she has overcome great suffering. She has learned to crawl and walk. She loves music and singing and dancing, and can actively partake. She has the most brilliant smile. She is cheeky and feisty, demanding at times. She laughs… a LOT. And oh, she has an infinite capacity to love.
She doesn’t judge people by the colour of their skin, how they look, what car they drive, or how big their house is. She doesn’t care about any of that. She willingly shares her food and toys. All she asks is a bit of attention, a full tummy, somewhere comfy to sleep, and as many hugs as you can spare.
What she has, is a rare syndrome. It’s called Cardiofaciocutaneous Syndrome. That is label enough. It’s completely true. It’s not insulting. It is a fact. It doesn’t make her special, just different. She’s not a victim of this syndrome, or a sufferer of it, or a patient. She is not impaired. She is not handicapped. It is simply something which is a part of her.
The most appropriate label to use is usually the one given by the parents.
In our case, that would be Carys. Carys is a Welsh name which comes from the word ‘love’ (cara’). I believe it is also very similar to a Greek word meaning ‘happy’ or ‘joy’ (περιχαρής / pericharí̱s). You can’t get more appropriate than that!
Carys, like all people with syndromes, is a human being, just like you and me. I think there are many so-called ‘normal’ people out there in the community who are far more disabled and non-functioning than Carys will ever be.
On Friday, Carys finished her last week of school for the year. It was a really sad day, because next term, she will have a new bus driver.
Edmund has been taking Carys to school for five years. Come rain, hail, fog, frost, snow or shine, he reliably turned up every morning with a smile and a joke, and there was no one else I would rather entrust my special little girl to. I always knew, from the first moment we met, that Carys would be safe with him.
He loved all the kids on his school run, knew them all well, their little moods and quirks and funny ways, what made them tick, when to pander to them, and when not. They all loved him. Carys was always happy to see him.
No matter how sleep-deprived the previous night had been coping with Carys’s needs or health issues, Edmund always cheered me up. He loved the kids, and he loved his job. Where disabled children are concerned, being their bus driver doesn’t mean simply driving a bus.
He hasn’t retired. He isn’t ill. His bus hasn’t conked out. He hasn’t lost his drivers license, sold his bus or emigrated. Every year he dutifully put in his tender for Carys’s school run, and every year he was forced to shave it back if he wanted to keep the business. This year, someone somehow managed to massively undercut his bid.
Strangely, he’s not the only one, and there has been quite an outcry. It is yet another example of disabled children being treated without regard. And I am concerned that someone who can slash costs so readily may be more interested in pursuing their own profits than the well-being and safety of the vulnerable special needs children entrusted into his care.
I cried when I said good bye to Edmund. I watched him say good bye to Carys, and my heart ached. It might as well have been goodbye till next week, or next term as far as she’s concerned. Although her lack of understanding may protect her from sadness, which arguably could be a good thing, it also keeps her locked in the dark. In the future, she may well wonder where he is and why he has abandoned her, yet not be able to express it.
I know that people drift in and out of our lives as often as clouds drift across the sun, bringing their light, or shadows, with them. Some leave an imprint behind as they move on. And sadness fades with time. It’s all part of the process. But sometimes, it’s really hard to watch them go.