When I first started blogging, which is all of 9 years ago now, I promised myself that I would record both the beautiful and the ugly side of parenting. I wanted to remember what it was really like, not what I would perhaps rather pretend it was like. Since Dominic came along, the definition of all aspects of my parenting journey has shifted in a way that I would never have imagined when I first sat down at the computer to write about being pregnant for the first time. Admittedly a lot of what I have experienced of parenting could be thought of as about as ugly as it gets, and that can sometimes make it hard for me to sit down and make myself face, accept and ultimately cherish the reality of it. The fear, the grief, the pain, the feeling that your world is falling to pieces as you scrabble to keep the thin threads of your delicate children from fluttering away from you and being lost forever can be all consuming. When you are so focused on one thing, the rest of the world simply fades into the background, in the same way as if you were to stare for too long at a flower that you had grasped between your thumb and finger, the rest of the world behind it becomes a blur and irrelevant to the object of your fascination.
There was a single defining event in my life that caused me so much pain that I lost sight of everything else, my flower moment if you will. Reality got so ugly for a while that, unable to face the pain and grief for what it was, I stopped communicating in every way. I stopped writing about my life and my family, no longer wanting to face anything that might make me relive the pain. The walls went up, and I did my very best to not turn into that crazy lady who whispers to the baked beans in the supermarket that the clam chowder is looking at her funny before declaring to the world that she has borne Jason Donovan's love child whilst cooing over a packet of long grain rice. I already had three cats at this point in my life, so I knew that in most people's opinion I was only a mere hop skip and jump away from muttering that the beans made me do it as I was dragged away by the men in white anyway. Instead, in a futile effort to internalise and try and protect those around me from the tidal wave of raw pain that was threatening to sweep me away, I stopped living, too scared to feel any emotion for fear that once my guard was down there was no going back. I could not shut my eyes without flash backs that would leave me sweating, face burning hot with the unpleasant lurching emotions that your mind drags you through when you are doing your very best to run in the opposite direction. It's a miracle that I never took to my bed, declaring myself too encased in my little bubble to do much other than occasionally lift the duvet and half heartedly throw a few cheesy Wotsits on the floor to feed the children before returning to my sobbing, flashbacks and insomnia. I also, I am proud to say, resisted the urge to try and find solace in country and western music that calls out to the lonely, heart broken and hard of hearing and lulls them into a catatonic trance of stories about love and loss and git-tars. And as tempting as it was to try drown my sorrows in an alcohol hand wipe bottle, I never actually resorted to anything stronger than a Wham bar in times of desperation. All in all I don't think I did too badly given the mess I was inside.
I think it helps that I am a big believer in not wasting too much time whining about what you don't like about your life, when your time could be far better spent trying to do something to change whatever it is that is making you unhappy in the first place. It can take a certain amount of self awareness to be able to see the need to step back from your situation and try to understand what the real problem is though. I have found, being lucky enough to share my life with a man full to the brim with sense, and for the most part, calm rationale when it comes to emotive situations (and lots more far sexier qualities too, just to clarify), I often turn to my lovely Roger who dutifully looks at me over the computer and nods at strategic times as I try to make my mouth keep up with my brain as I explain the problem, anxiety, self doubt or indignity that is vexing me. As my mouth moves and words fall out of it, as I try to explain and reason my way around the problem, I gain a sense of clarity and insight into what I'm really dealing with, the motivations at play and where the solution lies for me to think my way out of it. Roger's role, although generally silent, is the most important of all, as he allows me the sounding board to twist and spin and inspect a problem trying to see it from all sides, before applying some lateral thinking to solving it. When he does interject, it's to make me clarify or (if he has his lawyer's hat on) to pick me up on generalisations. Blogging is taking this process and freezing it in time, capturing and recording it, trying to learn from it and sharing it in case someone somewhere is looking for answers too. My blog is a literary photo album for me to treasure, and hopefully for others to connect with, it captures small snapshots of events that have caused me to be hurt, to laugh or to stop and look at myself or the world around me. It is the album with all the embarrassing, tearful and less than pretty pictures of our life left in, so whilst at times it may not be comfortable or necessary painless to flick though, it is at least honest as far as it is representative of how I felt at the time and how our experiences go on to shape us and move us forwards.
Shutting down emotionally to survive a long and drawn out personal torture, is a natural instinct for many people I'm sure. None more so than those fortunate enough to have become parents, it's what keeps them plodding through the sleep deprived, boob ravaged early weeks and headlong into the toddler mayhem with a vaguely dazzled smile on their faces. There are times when a robotic sense of going through the motions is a way of running away rather than just simply coping though. When you are facing a raging, gaping black hole of emotions you'd rather not deal with head on, or at least you might when you have the time to schedule in a nervous breakdown, but right now you just have too much to do. Then escape, avoidance and denial is the only option.
The ability to survive in this way is the only reason I'm vaguely sane today, but also probably why sometimes I feel so lonely listening to other mothers in the playground chatting. I've been absent, either physically or emotionally for a fair proportion of the children's time at school. It is little wonder that we are eyed with friendly caution, after all it's not as though we easily blend into the crowd, and Dominic does have the unfortunate habit of growling at anyone who comes near us, although he doesn't bite (might lick you a little if you stand too close though…). I understand how strange it must seem to chose to withdraw emotionally from everything, but let me try and explain why. When my beautiful Lilia was three years old, and already wise beyond her years, she and Elliot travelled on the train to London with her Granny and Opa to come and say goodbye to her baby brother who was not expected to make it through another night. I stood in the toilet cubicle with her outside intensive care and, as it had been my only opportunity to talk to her by myself, we discussed what it meant to be dead, what forever meant and why it was important to say a proper good bye to her little brother. Of course Lilia, wiser than us all, didn't see her little brother on the table. She saw a small swollen body, connected to countless tubes and machines that pinged and beeped and made a small chest rise and fall awkwardly. She saw no need to say good bye to the body that did not look like her brother, sound like her brother or smell like her brother. She found it difficult to even contemplate that her beautiful, doe-eyed Dominic was somehow trapped inside this swollen, battered body that was giving up the fight. I wonder if she looked at me with the same curious large eyes wondering where her mother was too, as I may have looked, sounded and smelt right, but I wasn't the one calmly talking about the finality of death and the importance of saying goodbye, I was trapped inside in my own way, just like Dominic. My body going through the motions whilst inside a growing black hole raged threatening to lift my last finger off the ledge.
Even when, many months later we returned home, Dominic clutched close to me, a gift all the more precious for having nearly been lost, the gaping chasm was still there, which made me question my sanity when all those around me were celebrating and telling me how wonderful I must feel. It turns out that the gaping chasm doesn't disappear once grief has opened it, even if you are granted one more chance, against all the odds, which I find a curious thing. It left me walking a strange tightrope where extremes of emotions would surge on me catching me defenceless and unable to do anything but embrace the fear and pain that powered them. I still cringe at the memory of Elliot's year two parents’ evening, when the first time I met his teachers I was only a few seconds into explaining how difficult things had been at home for him, and the next thing I know I had both teachers exchanging bemused looks as I sobbed, incoherently, about nearly losing Dominic. It snuck up and walloped me over the head with all the warning of a speeding freight train, and would continue to do so for a long time afterwards. I just didn’t talk about it other than set phrases to get through conversations where necessary. As you can imagine, I was great fun to be around. It was never something I could outrun, no matter how many times I tried to laugh, dance or just live it away.
Imagine my delight when, in the deepest recesses of the internet, in a dusty corner, partly covered by last year's Ok magazine, I stumbled across other people like me. It was as good as being presented with a big authoritative stamp saying CERTIFIED SANE across my forehead. I discovered other people who laugh nervously and don't quite know where to put themselves when they hear "I don't know how you do it" for the gazillionth time, or adopt completely inappropriate uses of humour in delicate situations involving some body function or other, because hey, ordinary body functions, and some completely extraordinary ones to be fair, are the norm around here. I believed at this time that I was impossibly different from other mothers, that I would forever be going through the motions as I was still so led by one event and the emotions that orbited it.
Blogging, whilst an alien activity to many is, for me, an attempt to metaphorically open the curtains and bathe room in sunlight, so in the same way that you would hope that a tired and frustrated moth that is repeatedly slamming itself into the small desk light might see the bigger picture and fly towards the window instead, I might be able to share with others, and understand myself some of the things that happen to us and keep them in perspective as being only part of the picture. Pah, whatever you think of my metaphors the fact was that when I was simply living in a repetitive loop of frustrated torture and I knew that it served as much purpose as beating my head against an inanimate object. I couldn't change the past, but I could try and understand who it has made me, and accept the world as it now is for me as a mother which must appear to be a very different place, I imagine, than many of you sat on the other side of the computer screen. It is indeed true that however enthusiastically you try to make small talk in playgrounds and to continue to live your life in your old routines, keeping up with friends' news, going to swimming lessons and ballet lessons it is very hard to not feel feel isolated. It's like being a jam and crisp kind of sandwich in a BLT kind of world, you belong on the same shelf on the fridge, but the choice of filling so alien to what most are used to, tends to leave you the lone, misunderstood sandwich over looked in the lunchtime rush. There I go with those metaphors again.
I felt bereft and distant from everyone and everything thing until I let myself accept that I was forever changed by the experience and had to accept that things would never be the same again. I was not mourning the loss of my child, as I was one of the lucky ones who got to take them home, I was mourning the loss of the innocence of motherhood. Gone were the days when I simply worried about what school they'd go to, who their friends will be. I'd catch myself, horrified at my betrayal, wondering whether I should plan ahead at all as my family's future was suddenly fragile and uncertain. That gaping hole still comes into my peripheral vision when I think or talk about Dominic's future, and it still hurts to face it. But for the most part I try and accept it for what it is, part of the changed me, and something that, when it is not understood or acknowledged, can silently draw a line between 'us' and 'them', making normal family life seem frivolous and indulgent and making our dark circles and worry lines become what defines us. The repetitive loop of 'I don't know how you cope' and 'you're an amazing mum', whilst said with the best of intentions, just furthers this underlying conviction that there is a profound and dividing difference, that we, the mothers of medically fragile children, are very different from you, the mothers of typical children. What I leant more than anything from this time, is that what happens to you is only a fraction of the big picture, it's how you react to those experiences that really counts, to define me simply by the sad and painful things that we have been through with Dominic is missing the bigger, better, brighter picture. You see there is so much beauty in our lives that more than outweighs the pain. The beauty of life, vulnerable, hilarious and ever changing, and definitely worth trying to capture and record and remember however inadequate words on a computer screen can be. I see beauty in slumped bodies, stomachs changed forever by surgery, in flashing wheels where feet should walk. It's there in the kindness, understanding and generosity that siblings show instinctively, in the friendships that can form when our differences are celebrated and respected, but our similarities are not forgotten.
If you read through our blogs, talking about day to day life, see us unloading bizarre torturous looking equipment out of an enormous boot of an enormous car, see the strange, sometimes gross looking appendages to a small, very cute looking boy, it is easy to see why you might only see our differences and stand there staring unconsciously as we roll past trying to pretend we haven’t seen you. I'll let you into a little secret though, we're not really doing anything different than you are. We perhaps get to throw out the normal parenting rule book and wing it a bit more, but we feel just as much love, exasperation, pride and guilt as you do when you look at your children, and our children need exactly the same nurture and respect and love as yours do. Of course I trade off coffee mornings for clinic appointments and nights out for spending an evening syringing bits of flower out of my son's stomach that some sweet and thoughtful child gave him and he thought looked a bit delicious. But we both wake up much earlier than we want to the next morning feeling the same bitter resentment that sleep stolen by children from has a habit of inducing. But don’t for a second feel sorry for us, because our life has its advantages as well of course. I never had to get two older children ready for school in the morning and try and fit in feeding an octopus child cereal that I would later have to scrape off the ceiling. I get to pimp Dominic's wheelchair in a way that would never be acceptable on those boring old prams and I still get to delight in the beautifully soft and squidgy feet that are unsullied by years worth of running, which is something I'm thankful for every time they smooch my face up in the night as he occupies the entire width of a double bed. We get to park right by the shops and jump the cues at theme parks, and we can cut through the crowds on market day with ease when Dominic turns on the cat-being-tortured-crossed-with-a-banshee-getting-a-bikini-wax wail and people practically leap out of our way.
What I do practically day to day may be very different from you, but I am not a different parent from you. The same emotions that you feel when your child walks for the first time, I felt too, just when he first clung for dear life to a table and I managed to take my hands off him for a few seconds and he stayed put. The overwhelming rush of love at his brilliance when he uttered his first word after using sign language for so long is the same feeling of awe that you felt when your baby first turned her eyes on you and said "mama" with those rose bud lips. I in turn feel the same exasperation when those oh so cute voices just won't shut up and give you two minutes bloody peace and I too go and hide in the toilet and check Facebook on my phone for two minutes as a sanity saver, although I might just give him a lolly to lick first to make sure he doesn't eat his homework… or the sofa… or the dog… or one of the other children while I'm out of view. While you're trying to juggle feeding your youngest while making dinner for the other two, I'm trying to not lose track of what parts of his feed I've added while trying to not let the pan boil over. You fly out the door with play dates and social events on your mind, I'm busy plugging in hospital appointments and school meetings to my calendar. You juggle one set of balls, I juggle another. We are both parents, you on your side of the computer, me on mine.
I'm not amazing, not a super mum, I'm nothing special, and you do know how I do it. I do it in the same way you haul yourself out of bed in the middle of the night to comfort your vomiting child. You do it because you need to, because those little people are depending on you, and you are their superhero. And here we are, the full circle of the reason that I blog. I blog because I want to record the good and the bad and the ugly and the beautiful side to parenting. I want to let you know what my life is like, grant you access to a world where sometimes there are raw and ugly truths, some that I chose to share, and some that I save for the stillness of night, where I can wrap my arms around my little boy and cry for all the mothers that would give anything to breathe in the scent of their precious child's hair one more time, and the guilt that I'm so glad that it's not me with the empty arms. Sometimes I write because I don't know what else to do, or how else to understand how I feel about the life I'm living. The world doesn't always make sense, but the way we respond to it, interact with each other and try to learn and grow is surely what life is really about, not just these events that mark out our linear progression through it. Blogging, for all its self indulgence, for me finds a way to do that. And I hope that in someway it serves to demystify disabled children and their families too, so that perhaps we don't seem so alien to what you know yourself.
So if you see a small kid, with happy feet that waggle with delight when he's talking, wheeling about with what appears to be an infinite amount of tubes coming from him, and wheels that flash in an attention seeking kind of way, don’t feel sorry for him. He doesn’t feel sorry for himself, he is who he is because of the life he leads and I wouldn’t change anything about him, because he is amazing, and he has an amazing brother and sister who could teach a lot of adults I know a few lessons on compassion and empathy. Children like Dominic should be cherished and celebrated and challenged just like your children. If you happen across him, you can guarantee that he is just getting on with being a 4 year old, hoping he might be able to challenge on the 'no more tootie frootie' comment and wondering if the shins of the adults that have stopped to gawp at him directly at the bottom of the slope that he's freewheeling down might slow him down enough to avoid hitting the wall. If you just look past the bag appears to be draining tootie frootie colours by his feet in the same way I'll pretend to not see those two lines of green snot under your child's nose, perhaps ignore the pale vampiric look that we sometimes adopt after long stays in hospital, we may look unapproachable, but we don't bite… Ahem, well okay one of us might chew your coat, if you stand too close… and if you hear a low growl, it's just Dominic's way of saying hello while he's learning to trust people again, do say hello back. If you look again you'll see the Spiderman top, the beloved toy on his knee, the brother and sister squealing with delight as he chases them. You’ll hear the ecstatic "Yay" when I say maybe to his request to stay up late and watch a film with me, fingers and toes wiggling at the mere thought of the fun he might have. You'll see the beauty I see, you’ll see the beauty you see when you look at your child. Perhaps we're not so different after all.
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