Hypocrisy, Truth and Lies #repealthe8th

It is a beautiful, sunny day, and today the people of Ireland are making history yet again by voting on changes to the constitution. Times change, society changes, people change, the world changes, and sometimes the legislation which governs us must change to accommodate that. The people of Ireland are not afraid; they’ve done it before, and I hope they will do it again.

What does it mean? Very simply, it means abortion could be legalised in Ireland. Most people would agree that abortion is a double-edged sword; no one wants to kill an unborn child. In Ireland, there will be strict controls so that the system cannot be abused, and abortions will only take place during the first twelve weeks.

The debate still rages over whether life starts at conception, or later. And until now, the right to life of the unborn child has been prioritised over the health of the mother, to the extent that women have been allowed to die rather than provide medical intervention which might compromise the life of the baby.

Historically, women and children have not been well looked after in Ireland. It is only in recent years that the truth has emerged concerning the Magdalene laundries, mother and baby homes, dying rooms, cesspits stuffed with the bodies of babies and children, widespread abuse of children by priests and covered up by the church… lies, cover-ups, it’s a horrific legacy indicating just how Ireland in the recent past has actually valued its women and children, particularly its vulnerable pregnant women and girls.

Now it’s time to change all that.

I don’t approve of abortion; in all seriousness, who does? But if I was allowed a vote, I would without hesitation vote YES, because there are times when abortion is necessary: rape, incest, childhood pregnancy, when a woman has mental health issues, for the mother’s health and right to life, if the baby has serious deformities or health issues, to name but a few circumstances in which a termination might sadly be required.

I don’t believe women’s bodies and fertility should be controlled by the state, the church or the patriarchy. A pregnancy is a private matter between a woman and a man. If the woman is in a loving relationship with that man, they should both be part of the decision, if an abortion becomes necessary, but primarily, a woman should hold the rights over her own pregnancy.

You might be shocked at my decision, when I have a profoundly disabled child of my own. But having Carys has taught me so much. I would never judge someone who decided to terminate a pregnancy based on a diagnosis of abnormalities in their unborn child, because I know how hard it is to raise such a child, how it controls your life, actually, how it sucks the life out of you so you become a shell of the human you once were, how in fact society and the state do not value your child, will not support and help you or the child, how you must fight, fight, fight when you are so exhausted and stressed you can barely think straight.

That’s what it’s like for the mother. Nowhere in this debate has anyone stopped to consider what life is like for such a child, how much they suffer, and believe me, they suffer.

Of course, there is great joy in sharing your life with such a child, too. And so much love. But the good doesn’t outweigh the bad, or justify it; they just exist together, the bad and the good, side by side, impossible to separate. And that’s why I wouldn’t judge anyone who chose an abortion in similar circumstances. And neither should anyone else. In fact, I support their right to choose.

The twelve week rule. I support that too, although in effect, it will rule out a lot of women. In my pregnancy, the problems were not detected until I had my first scan, and I didn’t get my first scan until I was 18 weeks pregnant. Well past the twelve week limit.

My doctors spoke of termination, but of course that meant travelling to the UK. I won’t lie, I considered it. I researched all the syndromes I could find to see what my child’s life might be like, and if I thought I could cope. We decided to let nature run its course, so long as the baby wasn’t in any pain. The doctors said in their experience, in 100% of cases, the baby dies before it is born. They were wrong. Carys was born alive, and she is now nearly thirteen years old. That decision was right for us, but I respect that it might not be for others. I want people to have the right to choose.

Women should not have to travel overseas to access abortions. They need the comfort and support of family, they should be able to access after-care and counselling in their own country, not risk 14 years imprisonment. They should receive safe medical intervention provided by experienced, knowledgeable medical staff, not buy pills over the internet. And they should be trusted to make the right decisions over their own bodies. Contrary to what no-voters think, women care about their unborn babies, they do not see abortion as some kind of new birth control measure. Society needs to stop treating women as if they don’t have the capacity for rational thought.

Of course, the truth has been manipulated, and lies promulgated as fact in a debate which has prompted a highly emotional and passionate response. Now here’s the hypocrisy; the no-voters are arguing for the right of the unborn child to life, that life begins at conception. But in Ireland, if a child dies in the womb, it cannot be registered. In other words, in the eye of the law and the state that child, that human being, doesn’t exist, and has never existed. Therefore, whilst a baby is unborn it can have no rights, because it doesn’t exist. I discovered this personally when I was pregnant with Carys and believed she would die in utero. My only option to prove that she was ever here was to write her name in the hospital’s book of remembrance. It’s a blatant double-standard.

I know that this is a very difficult personal decision for everyone. It’s an incredibly difficult thing to vote on. But I really hope that the people of Ireland will vote with open minds and open hearts, with compassion and consideration, and without judgement and prejudice.

I am sitting on the edge of Carys’s bed. She sprawls across my lap, fuzzy head tucked into the hollow of my neck, small arms clutching me tight. It is incredible how much strength there is in her under-developed muscles. I wait for her sobs to subside. It is three am. I am exhausted. We have not had a single solid night’s sleep in a month.

Carys has made great progress with her walking, so much so, that her PT feels that she no longer needs her AFO’s. How I rejoiced to hear that! But this particular silver lining, like so many, comes with its own dark cloud attatched.

We have always been grateful that Carys loves her sleep. She is a good sleeper, and if she wakes at night, usually she manages to drift off again. That is partly down to the ‘rituals’ we have adopted with all our children from day one: the soft blanket, the cuddly toy, the musical toy, the fun songs and stories, the hugs and kisses. She loves her bed, and she loves bed-time.

That’s so important to us parents; we can’t function well without good sleep, either. I turn into Godzilla if I don’t get my eight hour quota of zeds, and even then my family know not to speak to me until I’ve had my first coffee of the day!

How Carys Likes to sleep.

How Carys likes to sleep.

Carys likes to sleep curled up on her side in the foetal position, or on her tummy with her knees drawn up underneath her, bum in the air.

She can’t do that anymore, though, because at bed time I have to strap her into her night-time AFO’s, with an added contraption called ‘gators’. It’s like having heavy plastic knee-boots strapped onto her legs with a boned corset-like structure fasted over the top and up to the tops of her thighs.

The AFOs hold her foot at a 90 degree angle, stretching her calf. The gator prevents her from bending her leg at the knee so that her hamstrings are stretched. Without them, her muscles would tighten and seize up, making walking impossible in the future.


Carys wearing her AFO’s and gators.

It also means she can’t sleep, because she can’t get comfortable. Getting off to sleep initially doesn’t seem to be a problem, presumably because she is so tired to start with. However, she does now kick and fight when I strap her into them, because she has come to understand what they mean. After a few hours, inevitabley she wakes, any time between midnight and 3am, and then she gets very upset. And who can blame her?

Yesterday, her little face looked bruised with tiredness, grey smudges under her eyes like she’d slept without taking off her mascara. Carys doesn’t wear make-up, but you get the picture. And she was so grumpy and tired all day. She really needed a proper night’s sleep, and she wasn’t the only one… Conor and I did too. We’ve been taking it in turns to deal with her in the night.

So I decided to let her go to bed without her AFOs and gators, just for one night, and she slept like a baby! She didn’t wake once. I was happy for her, but of course I felt the duality of guilt; guilty for not following through on her treatment, and wondering how far that one night had set us back, and guilty for forcing these horrible contraptions on her night after night, singing songs to her and smiling widely as if they are a good thing and she shouldn’t make such a fuss.

I can’t work out which makes me the better mother… or the worst.

Tonight I strapped her back into them with a smiling face and a heavy heart. She kicked and kicked and moaned, but she didn’t cry. Not yet.

Carys is my little fairy child, my changeling, ethereal as breath, solid as bone, vital as blood, flighty as thought, a gift, a blessing and a curse. I know I can’t live without her, I don’t want a life without her, but living with her is the hardest thing I have ever had to do. She is my life’s work. I push and pull at her with equal force.

Every night, I strap her into her suffering, and yet she forgives me, draws comfort from me even, wraps me in more love than I am capable of receiving, or deserve.

I don’t know when to stop. When is enough? It’s been a month. We’ve come this far. To stop now would only belittle her endurance to this point. It might only take another month, maybe two, and in her lifetime and ours, that’s a mere moment.

To walk unencumbered. She loves to walk. If I try to hold her hand, she snatches one, sometimes both, out of my grasp. She wants this, I know she does. But she doesn’t associate the night-time torture with her freedom to walk during the day.

Carys will never walk ‘well’. She will never walk far. Even so, she has travelled further than most of us. I guess we will just take it one step… one night… at a time.

My second year at uni has now finished… I had my last exam on Thursday. Let’s just say that I found this last semester somewhat intense. I’ll be posting about that later, but I’d just like to inform Irish mythology fans that I have a lot of posts coming up over the summer that you might find interesting, although I can’t guarantee I will be able to keep it going come September, as I gear up for Year Three- The Last… gulp! Where did the time go?

If you would like to reblog this post, please use the PRESS THIS button. Hugh has an excellent post on the PRESS THIS feature, if you want to know more. ☺

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I haven’t posted about Carys for a long time, not because there was nothing to tell, but because progress has been a long slow plod of repetitiveness and, I know it sounds awful, but yes, monotony; not particularly interesting to read, and achievements which might seem minor and trivial to the outsider, although spectacular to us.

This week, though, we had some great news: Carys will be AFO free! At least, during the day-time. What does this mean? No more clunky, heavy plastic leg braces strapped to her lower legs. Carys needed AFO’s for several reasons: for support, as the muscles around her ankles were very weak; to stretch her calf muscles, as they are very tight, and she cant’ make a 90 degree angle at her ankle like we can; also to correct her pronation. Read More

Today is a significant one in world history. No matter which side of the fence we stand on, we have no choice but to accept. Around the world, governments are also preparing to show acceptance. And yet, there seems to be a global sense of uncertainty, and fear.

I fear for the minorities. I fear for acceptance. For tolerance. And I am reminded of something I wrote a few years ago for 1000 voices speak for compassion, which I think is as relevant today as it was then, if not more so.

I don’t like moths. I don’t like how they enter my house uninvited, fluttering blindly about, and cluster in a seething panic around any available light source. The frenzied flapping of their dull, tattered wings gives me the creeps.

But I love butterflies. When they gate-crash, I feel privileged, blessed, and patiently herd them out to freedom for fear their short, beautiful lives might meet an untimely end within my four walls.

When I found a glorious creature with stunning red and black markings walking determinedly across my doormat one spring morning, I assumed he was a newly hatched butterfly ready to test his wings. I opened the door respectfully, and watched him take flight.

Imagine my surprise when I discovered he was actually a day-flying cinnabar moth. Who knew that moths could be so gorgeous, or that some of them flew by day and not in the shadow of night? Read More

Sometimes, things happen in our lives that fill us with deep joy; we can feel it swelling and expanding within us until it is so great, we think we might just burst, because we can’t possibly contain it. Have you ever had that feeling?

But it carries on growing regardless, because it’s not something bound by our physical limitations; it exists within our  soul. And quite often its caused by the little things in life, not that lottery win, or a new car, or a designer handbag that cost more than a house.

It’s climbing a mountain, admiring a beautiful view, inhaling the fragrance of a beautiful flower, feeling the sun on your face, the impromptu hug from a child.

Two weekends ago, I had this feeling walking through the Burren. I tried to capture it in my pictures. I don’t know if I did, but it doesn’t really matter. My senses still remember.

My walking enabled me to be in the Burren, and my senses enabled me to experience it. And it was truly an unforgettable gift.

Imagine if you can’t walk. Imagine if your senses interpret everything around you all wrong. Your life is limited already by being immobile; just think for a moment how that would impact everything you do in your normal daily life. Read More

A Mother’s Thoughts and Fears | Update

Covered in blood

Covered in blood

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.

9 perfect baby teeth

9 perfect baby teeth

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

A Mother’s Thoughts and Fears

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.

No Nativity and an Update on Brushing

Carys dressed as an angel for her school nativity a couple of years back.

Carys dressed as an angel for her school nativity a couple of years back.

We have no nativity to attend this year. It is the first year in a decade that we have not attended a nativity. Our little Carys is now too grown up to be in a nativity. She will be ten years old in one week. How the time has flown! Double figures, and no nativity.

I loved watching Carys in her school nativity. She was usually dressed as an angel, sitting in her wheelchair, holding a shaker with bells on it. She would shake her bells throughout the play, totally oblivious to everything going on around her, except the songs; she adores music.

Seeing her on a stage, taking part… well, being included might be a more accurate description, lol… always gave me pause for thought; it made me see her differently, not as just my little girl, but a person with her own life, if not independence, making her own friendships and bonds, on her own terms. And it filled me with a flutter of mixed feelings; gladness, sadness, pride and probably others that were so intertwined and mangled, I couldn’t put words to them.

An update on the Willbargar Brushing and Compressions; we’ve been brushing for six weeks now. At the time it was introduced, I felt quite perturbed; why had no one ever suggested this for Carys before? Surely that is what having experts like OT’s in her life is for, to recognise what Carys’s requirements are and match them with treatments?

One week in, and I quickly realised that there was no way I could have committed to it in the past. I don’t know how receptive Carys would have been when she was younger, but believe it or not, it’s not just about her; it’s about the parents and caregivers, too.

Life was bitten into 90 minute segments. Although the actual technique only takes five or ten minutes to complete, there is all the organisation, the dressing and undressing etc that it involves. Which means that realistically you only have about 70/ 75 minutes till the next one.

That’s an hour and fifteen minutes. Just enough time to cook dinner. make a start on the ironing, make a start on the hoovering, make a start on most things and then abandon them halfway through, not enough time to do the food shopping, go out for lunch, or in fact do anything outside of the home.

This process is one that needs consistency and routine. If you don’t commit to it, it wont be effective. I suspect that half of the time it fails, it is because the adults providing this care are unable to commit to it. When you have work and other children, it is hard to stick to.

I admit that in the past, I wasn’t always in a happy headspace over Carys. I believe this would have been barrier enough. I would not have been able to commit to it. I know that. I also firmly believe that things happen in our lives when they need to.

There is no point in being aggrieved over the fact that no one suggested brushing to us five years ago. Carys may not have been ready for it; I was definitely not. I am so grateful that all the right circumstances are in place now; the right OT, my attitude and willingness, and a teacher at school who is equally willing and passionate about helping Carys to achieve her full potential.

Now we are entering Phase Two; the frequency has reduced to five brushings and compressions a day, but now we have something called a Sensory Diet to accompany them. This is nothing to do with food; it is a series of deep pressure sensory activities tailored to Carys’s needs and abilities, such as lateral swinging, deep massage, rocking, back pressing, being rolled tightly in a duvet etc. It takes no more than 15 minutes to carry out, and is fun to do, more like play than therapy, parent-child bonding time. We like doing it, and that makes it so much easier to stick to.

There will be other aspects to it in the near future; vibratory tools and exercises for desensitising Carys’s mouth, and the use of weighted vests and blankets. But for now, I won’t think of them.

If you are about to embark on this program, be warned that it takes a LOT of commitment from everyone involved, and it will change your life. Like me, you will become a slave to that alarm on your phone, how you will grow to hate that ring tone! But the rewards will transform your life!

Already, the results are good; Carys is more relaxed, even in situations outside of the home. She has become more curious, more willing to reach out and touch things. She allows me to wash her hair, without even a murmur… whoever would have believed that could happen? She is reacting with less sensitivity to touch, although she still wriggles and squeals when I brush the soles of her feet, but then, who wouldn’t? She doesn’t pull away when I kiss her face, and that’s nice. She opens her mouth for her toothbrush and allows me to brush, you have no idea the battles that used to cause! Carys has the strength of Hercules when she wants!

We have a long way to go, but we’re getting there.

Why I Won’t Let You Mind My Special Needs Child

Carys on holiday 2012.

Carys on holiday 2012.

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.

Thank You

To everyone who read and commented on my recent post, My Daughter is NOT Disabled!, I just want to say two little words… Thank-you, and Sorry! (Is that actually three?)

I haven’t replied to any of you yet. To be completely honest, I was quite overwhelmed and blown away by the  beautiful, impassioned responses you wrote, and as you know from previous posts, I tend to get a bit weak and watery at such times.

When I read your comments, I just can’t understand why humanity is in such a bad place. Clearly, you are all a wonderful minority I am fortunate enough to be surrounded by.

Today, though, I will reply to each and every one.