Ugly

Carys at 2 months old, pre-surgery. The haemangioma was to double in size over the next 2 months. You can see here it's already starting to push down on her eye lid.

Carys at 2 months old, pre-surgery. The haemangioma was to double in size over the next 2 months. You can see here it’s already starting to push down on her eye lid.

The birth of a child with a rare syndrome like Carys is truly a lesson in human nature, your own as much as anyone else’s. It’s like taking a trip into the dark side of your soul. It’s not somewhere you want to get lost.

On this journey, we discover many ugly emotions lurking beneath our skins on a scale we never thought ourselves capable of; anger, despair, jealousy, shame, sorrow, confusion, self-pity and depression, to name but a few. And worst of all?

Hate.

For the strangers, who treat us like freaks. For the professionals, who treat us like an exhibit. For the friends who treat us like we’re made of china, whilst trying to hide their normal, perfect lives and normal, perfect children. For family, who aren’t there when they’re needed.

But all that is understandable, forgiveable. What’s not, is the hate directed at the child, that sweet, smiling, innocent cause of it all.

Confessing is so very hard to do. I don’t want to hear myself say it, because that makes it real. It makes me a monster, not a mother. Not even remotely human.

But it’s true. And here’s why; all I can see is a lifetime of changing nappies, mashing food, coping with tantrums, singing nursery rhymes to an adult child who keeps patting her head for yet another performance of ‘head shoulders knees and toes’, caring for a baby who never grows up in the true sense of the word, despite getting bigger.

And I wonder, will I ever climb a mountain again, hitch-hike across South America, stay out late drinking wine with friends, and not worry that I have to stay sober in case Carys goes into heart failure during the night and I have to get her to hospital? Will I ever feel weightless and carefree again?

Probably not.

And then I feel guilty for being so selfish. The hate creeps back in, suffocates me with self loathing, and that mocking, disdainful inner voice tells me I don’t deserve a child like Carys. In my blindness, I don’t even know which way to read that statement.

That dark side of me is relentless. It haunts me, never leaves me. It has become my cruel, faithful shadow, waiting eagerly to enfold and absorb me when times are tough. It reveals to me what true ugliness is, and it terrifies me that such a parasite can lie coiled up so tightly within me. Sometimes I get lost, and then it senses my vulnerability, it pounces and makes me do things I never normally would do.

So it was that one night, I almost deliberately ended it all. It was dark, I was driving, and the headlights of an oncoming truck were dazzling, mesmerising. It occurred to me how easy it would be just to swerve across the road into its path, just a tiny twitch of the steering wheel was all it would take, and then the deed would be done. Peace. No hatred, no grief, just nothing.

I didn’t do it, because in the dark, I’m a coward. But even over-riding my cowardice, my love for my children and my husband was stronger. I couldn’t do it to them, couldn’t leave them. The truth is, if you haven’t guessed by now, I love them far more than I love myself. And that’s how it should be; it’s the shining beacon which always leads me safely home, abandoning my trusty dark side and ugliness at the front door.

Shortly before Carys had surgery to remove the haemangioma, the birthmark which had bloomed on her forehead in the days following her birth, I took her shopping at our local mall. I was used to people gawping in her buggy as if it contained something they’d scrape off their shoe. Being used to it didn’t make it any easier to bear, but my choice was to tolerate or hibernate. I hadn’t expected to be hounded around the shopping centre by a group of children old enough to know better, quite frankly, who laughingly pointed out her deformity (just in case anyone happened to miss it), and exclaimed loudly, amid mock puking, how ugly my daughter was. I think the exact terminology went like this, “It’s (not she) disgusting!”

Instantly, hatred and anger flared and went to war inside me, using my soul as their battlefield.

But I think we can all see the real ugliness here. It has nothing to do with facial disfigurement. In fact, it has nothing to do with physical appearance at all.  Like it’s polar opposite, beauty, it’s something which can only be truly found on the inside of a person.

That’s why Carys has nothing to hide.

 

30 Comments on “Ugly

  1. When my son was stabbed through the brain, in the early days after the coma had begun to lift, before he could move, focus his eyes, speak or breathe alone, they told me that next day they would get him up out of the hospital bed and when I came I would find him sitting up.
    Like an idiot, my mind pictured ‘my’ son sitting up… the picture that greeted me of the slumped, slack-jawed figure suddenly brought home the possibilities.. probablities then… of the future… the rest of my life, the rest of his. I was terrified. Disgusted at myself… that self-loathing? Yes. I knew it.
    They don’t talk about that. They don’t warn you. No-one seems to acknowledge it.
    And we are almost always too ashamed to do so.
    And the pain of seeing our children that way and feeling those feelings is indescribable.
    No matter how much we love them.

    A brave post, Ali. These things need to be known.
    Thank you.

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        • I’ve just cried my eyes out at your story. Your sons are amazing. I have two amazing sons too. They certainly know how to live life. Your two are certainly making the most of it. Xxx

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          • I just watched the videos again myself and I’m in tears again too. Smiling though too. Yes, I have two amazing sons who have learned to treasure life through coming so very close to its loss. Pretty much anything I could write about them sounds trite. But I am so proud of them both.. and they constantly inspire me. xxx

            Liked by 1 person

            • Well there is nothing I can say to that but agree with you. I know recovery from something like this is an ongoing battle, but something tells that you’ve all got what it takes in bucketloads.

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            • You learn as you go, and it isn’t always easy or pleasant. But you know that yourself. I can’t imagine what you have gone through or what you face daily, Ali. Mine, I think, is the easier path, towards a visible hope. Even if Nick never fully recovers physically, the fact that he now finds joy in life and can do something to make a difference means we won.

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            • Absolutely! But as for the easier path, I really dont think there is one. Carys has no expectations of herself, or her achievements, and neither does anyone else. Within the limitations of her life, she is happy. Your son, I’m sure, has HUGE expectations of what he hopes to achieve, but the journey will be tougher for him than most, and that brings its own drawbacks. Our experiences are all so individual, we cant judge them, but learning about those of others helps us gain perspective on our own, I think.

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            • Yes, you’re right, Ali. One of the sad things I hear so frequently is along the lines of ‘my problems seem so trivial when compared with…’ Every single life faces problems and there is no comparison really. We each have our own challenges and what seems minor to one will be a mountain or a major milestone to another. We can’t judge, or trivialise even our own issues by comparison.

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  2. Kids like that need whipping, seriously. I am a firm believer that you shouldn’t treat awful kids any differently to awful adults because that’s what they’ll no doubt turn into anyway. The only reason for not lashing out at that particular bunch I suppose would have been shock and distress. I’ve not been in that position with a child but a year or so ago a group of kids stopped and stared at Finbar the dog and one of them, an obese, ugly kid with rotten teeth, pointed and laughed and said he was hideous and skinny. I turned on him and said, “And you’re fat! But at least he is meant to be skinny.” The kid’s face fell. I don’t suppose his doting mother who’d made him that size and rotted his teeth had ever called him anything but beautiful. I wished I could have called the words back—it wasn’t his fault if he’d been brought up all the wrong ways, but nothing about him would change if somebody didn’t lay into him.
    Life can be almost unbearable sometimes, but I’m so glad you left that lorry alone 🙂

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      • Finbar is a Spanish greyhound rescued from a Gypsy camp in southern Spain where he had a not very nice time. He has the scars to prove it, and he’s still terrified when boys or men point at him and make comments. I imagine it’s because if he attracted attention it was to get a good beating. He’s thin but he’s supposed to be. We get quite a lot of East European Gypsies here and they don’t like dogs. The kids peg stones at him and the parents say nothing. There’s a certain amount of education needed.

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    • Hey Louise! Fab to see you here! Glad you like it… we always feel so alone but we’re not, and it helps to know that. How is your gorgeous little Carys? Not been on fb that much lately so prob missed a LOT!

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  3. Before I was a mom, I worked as a daycare teacher, and one the kids in my class had a very large portwine birthmark that covered more than half his face. His mother had one that was about a fourth of her face. (And she was SO nice.) When the little kids would ask why Bradley “looked like that” his mom would say “That’s where God touched him before he was born and said ‘Bradley, you’re special.'” I always thought that was such a brilliant answer.

    The following year, when my daughter was born, she had a big, red “pressure mark” about the size of a quarter that got a lot darker when she got angry. People used to actually stop us in the store and ask if I hit her there!

    So when I saw your photo up top, the first thing I thought was “aww, what a cute baby!” then I noticed the haemangioma and thought, “oh, I hope that doesn’t affect her vision.” I’m so sorry you’ve had to deal with such insensitive people!

    As for your feelings of guilt, please don’t beat yourself up. As you know, both my kids are autistic, and as such, they often seem to have no soul and they’re just downright mean to me. I frequently find myself wishing horrible stuff that a mother should never think and I feel like a monster, but I’ve come to realize that before I was a mother, I was a human, so I have human feelings. It doesn’t make me a bad person. You are an awesome mom! I wish I lived close to you not only so we could hang out,but also, I would volunteer to give you respite care sometimes so you could have a date night with your hubby and get drunk or whatever and not have to worry about Carys. I don’t have a supportive family, so I understand how it is not to have anyone back you or offer their support.

    Thank you for the awesome post! And please kiss your beautiful little girl for me.

    xoxo ❤

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  4. I recognise so much of this, I am grateful to the few friends and family members who really understand why they have not seen me socially for 10 years or more, I have sung more songs than I I thought I knew (and I used to teach Nursery!) and sometimes things feel bleak. I started my blog to write about these things but haven’t been able to, thank you for doing it.
    Just so you know, you do find a way to start doing ‘normal’ things again eventually – you will figure out all the little work-arounds and seize each moment.
    As for the people who stare, it’s why our middle fingers are longer than the others isn’t it?

    Liked by 1 person

    • Steev, I wish I had your sense of humour… you always make me laugh! I think we wouldn’t be normal, or even human, if we didn’t have those bleak days.

      I actually wrote this a good few years ago, but had a difficult afternoon with Carys yesterday, which gave me a glimpse back into how things used to be. I thought it would be worth publishing it for all those parents out there who might be going through similar experiences that it is Ok to feel like this sometimes, that we all go through it. It’s not something we ever talk about, I know I never did at the time, but its important not to feel alone. When Carys was born, all the focus was on her, naturally and quite rightly. But I do think that professionals need to look up from the child and assess the mental health of the parent. After all, the parent has suddenly been landed with an enormous job on their hands that they never expected! The state really needs to provide some kind of counselling to help prepare them for what is to come. I know I would have benefited from that so much. Perhaps I wouldn’t even have been so overwhelmed by my dark side!

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      • I think that mental health is neglected, everywhere. When insurance will pay for only 14 days of care, but antidepressants take 21 days to become effective, what can be done to safeguard a sufferer from an act of despair? I’ve attended interdisciplinary case conferences (in advance of the patient and/or family’s being invited in, to participate), in which clinicians sought for solutions to such frustrating barriers to care. And considering that even an apparently uncomplicated pregnancy and birth can be followed by postpartum psychosis, it beggars belief that the psychological needs of a parent in your position can be thoughtlessly disregarded.

        You’ve traveled far, over the past nine years, hitch-hiking whatever assistance and encouragement have come between the many mountains you’ve climbed for Carys. There are more peaks and valleys ahead, so for health and safety’s sake, remember to keep your climbing equipment in good repair, eat well, stay hydrated, rest when you can, use UVF protection, and replace your socks and boots frequently.

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        • Thank you. Sounds like you have a medical background and speak with authority and experience. It does sound unbelievable when you say it like that, but I also think people suffering from deppression become very good at hiding it, even those close to me never picked up on it, and in fact I didnt even realise it myself at the time.

          I was lucky and got through it. Btw, I love your climbing analogy, and how you manage to mix poetic prose with medical terminology… once a writer, always a writer!!! Thanks for your support!

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  5. Hi Ali. I am overwhelmed by the naked outpouring of your soul and your inner turmoil that you have shared in this post. I wish there was something I could do to make it better for you, for Carys, and for your family. I know you have been able to find happiness and joy in your life such as it is and you need to focus on that happiness and not let the darkness overtake you. A smile can be self-fulfilling. Smile in spite of it all. Let your imagination take you to a physical place that makes you feel happy where your thoughts are calm, contented, and peaceful and it will help to soothe your soul. My thoughts are with you, dear friend.

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    • Thank you Rachele for your beautiful comments! I hope it will reassure you to know that I actually wrote this piece a few years ago, and that I no longer feel so desperate. I had a difficult afternoon with Carys yesterday, and it just reminded me of how things used to be. I wanted to put it on my blog to show other parents who might be going through similar experiences, that its Ok to have these feelings, that they are not alone, and that they will pass. You are right, smiling at someone does give you that feel-good factor!

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  6. Oh Ali, I can see you’re in so much pain and despair. Thank you for your honesty. I feel that going through all these emotions is only human. Why wouldn’t you feel all these conflicting, sometimes horrifying things? I don’t have any answers but I’m here with you. I wish I could say I understand, but I don’t: not what your life is like, not why either. Practically, it frustrates me that there aren’t more resources for you so you can sometimes get away and do the things you long to do in life. I’ve never heard of someone with an adult child like Carys going it alone: Eva Kittay’s daughter Sesha is in her thirties and still Eva is able to be a philosophy professor and do other things. It’s not selfish to want to get out into the world. Try to find compassion for yourself. Hugs.

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    • Hi Éilis! Please don’t worry about me, I wrote this piece quite a while ago, I don’t feel the same way now. I’ve moved through it. That’s not to say the chasm doesnt sometimes open up under my feet from time to time, its just that I have learned how to make the leap over it.

      I don’t know how your friend Eva has the energy to be a professor when she has Secha to care for, but I admire her for it! We have to be able to define ourselves by something other than the trials life has thrown at us, don’t you think? That’s probably why Eva has such drive. It’s why I write my blog and my books. Thanks for your lovely comment!

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  7. I can’t imagine what your life must be like, and I’m pretty imaginative. You’re an amazing person to be as upbeat as you usually are. You can teach us all a thing or two about humanity.

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    • I’m glad I come across as upbeat most of the time, lol! I often wonder about that!

      We all have our difficulties in life to overcome, and they’re all relative. Our problems always seem huge and insurmountable until we compare them to someone else’s, and then realise that we don’t have it so bad, after all.

      This year, our little community (CFC, Carys’s syndrome) has lost too many little ones, and a few others have been desperately ill. I am very fortunate, Carys is still with us, and on the whole quite well, so I have nothing to complain about.

      Just sometimes, I have to have my say, and sometimes my blog is the only place to do it! Thanks for reading, and leaving such a lovely comment.

      Liked by 1 person

  8. Angiomas can behave unpredictably. The three growths I’ve had since childhood have remained small, and haven’t changed much, but after entering middle age, I acquired five new ones, and four are symmetrically paired. My daughter developed one after she was born that grew for six months, and then over the next six months faded to a flat, colorless scar.

    Some of us are threatened, some are granted reprieves, and some are sorely tried.

    Liked by 1 person

    • Christine, you clearly understand from experience. Carys was just unfortunate, in that the positioning of hers threatened her sight. When it was decided that drug treatment wasn’t working, and surgery was required, it all happened in such a whirlwind, that I was left breathless. Surgery took 4 hours, anaesthesia is dangerous for Carys because of her heart condition. It was a scary time. But most of it was removed, and what was left has faded, just like your daughter’s did. She now has a horrible scar on her forehead from the surgery next to it, though.

      I’m glad your daughters faded so quickly while she was still so young, and she didn’t have to grow up dealing with the attention such a mark inevitably brings.

      I love your last line… you are soooooo right!

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