Hey, so it has been ages since I last posted anything. Because children. I have generally had less energy than it takes to form and type a sentence, plus I haven’t really had a lot to say. However, what I really need to get off my chest today is something that has been fermenting for quite a while, and it seems there is just no gentle way to say it – so here goes…
You all know our middle boy Remy was born with Down syndrome and without a posterior trapdoor, right? Yeah, well, what I also need you to know is that my son is still 100% capable. Of being a total dickhead.
Yes, the kid may be contending with a lot due to his extra chromosome and lack of an asshole, but it seems that doesn’t preclude him from being an asshole. The last few months in our house have been really tough, and Rem is always at the epicentre of the carnage. There has been much biting, screaming, scratching, and food throwing. And Remy has also behaved badly.
Now, some of you may already be calling me insensitive, or mean, or heaven-forbid, a bad mother. You can get stuffed though, because I am none of those things. I am simply an honest and practical woman, who has had enough of the clichéd rubbish that seems to always accompany a Down syndrome diagnosis. You may have heard, or even uttered, the trite (and awfully non-p.c.) lines; ‘Down syndrome people are truly gentle souls’, ‘Downs bubs are so placid’ and, my personal favourite ‘they are always so happy and affectionate’. Yeah right, tell that to the baby brother whose facial skin is deeply embedded under Remy’s fingernails.
It is widely acknowledged that typical two and three year-olds have a tendency to be serious jerks – hence the terms ‘terrible twos’ and ‘threenagers’. (Maybe four year-olds suck a bit too – I shall advise further when we get there). But what is usually glossed over is the capacity for children with Down syndrome to be anything other than ‘angels’, or ‘special gifts from God’. Don’t get me wrong; Rem truly is a gift, with his cheeky wee smile and quick sense of humour. Like every child that ever was conceived, he is unique and beautiful. There is not a single day where I am not grateful for each of my kids, but they still make me want to rip my hair out from its greying roots sometimes – and bless him, Remy often tries to help.
What I am basically requesting here is that people do not disabuse parents of special needs kids of their right to have an irrational, non-politically-correct rant, now and then. In asking me to pretend that all is sweetness and light with my child, and excusing his challenging behaviour as merely ‘playful’, you are denying both Remy and I the sense of normalcy and inclusion that we need. How is Remy supposed to learn that it is not ok to boink his siblings on the head with a badminton racquet? That it really isn’t cool to brandish a bread knife like Captain Crack Feathersword? How should I feel when I get a call from daycare to say someone else’s kid has a Rem-shaped tooth mark in their delicate flesh? Little Johnny’s mum probably won’t think Remy is so cute when that scenario goes down, and then my poor boy gets shipped off to ‘special school’ because he isn’t integrating well. Ain’t happening on my watch! The kid needs some boundaries, some relevant consequences, and perhaps, a muzzle.
In fairness, I recall our eldest son Yves doing most of the same annoying things Rem is now into. I remember whining about it at a mother’s group, as excited voices chimed in all around me, gleefully piling their typical toddler stories atop of mine. Yet tales of Remy’s annoying habits are usually met with a patronising 45-degree head tilt, extremely careful language, and much faux-thoughtful nodding. “How clever, he is a strong wee man, isn’t he?” “Oh cutie, he’s just practicing his spatial awareness”. Ladies, please; like all two-and-2-half year olds, he is practicing being a menace. Which is something I need to be able to talk openly about. I need genuine and practical advise on how to deal with Rem, and importantly, I need to have a laugh about it all too! So please don’t fob us off with tired platitudes, because it is fine to say that having Down syndrome can be difficult, beautiful, frustrating, hilarious, chaotic and O.K., all at the same time. Because that’s what all kids can be.
Adorable. Little. Turds.
A spot of indoor gardening
Butter wouldn’t melt…
I often speak of the omnipotence of perspective, but lately I find myself really losing it. Quiet reflection is the best antidote, but free time is the scarcest resource for our busy family. It has taken weeks and weeks to get a little time in which to write, and I have been feeling increasingly frustrated and self-pitying.
These past few months have been really tough – the paralysing melancholy that envelops me each winter has been deepened by sick kids and too many weeks of boring house arrest. I’d stop short of calling it drudgery, but I will admit that this period of my life is the most sedentary, repetitive, and grueling time I have known.
It is so easy, given the immediacy of young children and their myriad requirements, to get bogged down in the small stuff. A sobering sense of the bigger picture is all too easily misplaced when battling unending toddler tantrums, dirty nappies and spewed-on clothes.
The thing about perspective is that it is usually gained through struggle, shock, or loss. It is often delivered in a very potent dose, and at the time of receiving such a backhanded slap, it doesn’t feel possible to lose the impact of its message. Yet we do.
When Remy was born a year ago and we received so much help and support, I vowed to live generously, lightly, and with gratefulness in my heart. Unfortunately, as Remy has grown and become stronger, that resolution has started to fade a little, and in the daily grind, I let some valuable insight seep away. Reader, I hang my head.
In a week when social media has carried photographs of unspeakable horror, nobody needs reminding of the dire circumstances under which families are suffering worldwide. When babies bodies have been cast from the sky and left burning in fields, and innocent civilians are being bombed daily, it is absolutely inexcusable to complain about my privileged life. When I think of the remaining parents of those children lost on M17, who would surely give anything to tend to their babies once more, I feel an overwhelming shame at my petty complaints.
I want to be really clear about this – my message is not to look around you and think ‘I’m lucky, that person has it worse’, because there is always a victim in that negative exercise, and we ought not to summarily judge another’s journey. Instead, I implore you to honour the pain, the struggle, and the sacrifices of others around you, by being humble and grateful for what you have. Take the very best care of the relationships that are valuable to you – tend to others patiently, nurture and protect them.
We cannot restore to life the people we lose, nor gain back the precious moments we waste in anger or indecision; they are gone. But when we lose the lesson, we double the tragedy.
Lest we forget.
Tonight I am writing from my sleeping-bag on a hard hospital divan. Remy is in the bed beside me, recovering from his colostomy reversal procedure. While it is early days and we are not out of the woods just yet, I can tell you that he has pooped! And the gas games are also well underway… For 10.5 months we have anticipated Rem’s first bum-toot, and ironically, when it happened late yesterday afternoon, I didn’t even hear it! The two student nurses in attendance were well impressed though 😉 Despite the progress it looks like we will be here for a few days yet, so I have plenty of time to sit and stare at our brave son and contemplate his past, present and future…
You see, I’m not altogether sure that Remy is from around here. To me, in all his wide-eyed innocence and beauty, he seems other-worldly. Upon waking each morning, Remy looks at me with eyes that both beguile and calm – he doesn’t panic or cry in the manner of your typical 10 month old. He just gazes at me sleepily, blinks a little, then his face lights into a serene smile that suggests he has been anticipating this moment all night long. And as I lie there and exchange smiles and stares with him, I really do wonder, is this what we are all so afraid of?! I know these are early days and that we have a long road ahead of us, the twists and turns of which I ought not to underestimate… But surely this stunning little guy cannot be the embodiment of the very fear that demands so much antenatal screening? In retrospect, I am relieved that we didn’t undergo invasive testing with Remy, because I might never have known how easily this child could scoop up my heart and inflate it with a love so complete that I cannot help but adore all that he is.
We are so proud of our wee fighter, but no matter how big and strong he gets, he’ll always be our little Rembot x
P.S. I can’t express my gratitude enough to this wonderful hospital and its super-hero staff for all they are doing. Thank you RCH.
Oh dear, a bit of an update is required on Rem’s closure surgery…
Unfortunately, though it is now the right size, the scar tissue in Remy’s new bottom has not softened quite enough in order for it to function well 😦 Thus, we have another appointment at the end of this month to reassess, and then hopefully he will get the green light to poop.
However… we have a family holiday to Indonesia booked for late April, so the surgeon has said she would prefer to postpone the operation until after our trip. There is concern about infection or Bali-belly induced diarrhea, (either would have horrendous consequences for Remy), so it means he will have to endure the dilatations and bag-changes for at least another two months. Such a major bummer (no pun intended!).
Rem is so big and strong and aware of everything now, and all the ‘cares’ we have to perform are frustrating him more and more. “Twinkle twinkle little star’ has to be sung ad nauseam just to keep him from rolling off into the distance whenever we change a nappy, empty a bag, or stretch his bum. You can’t blame the poor kid for trying to escape – I wouldn’t stick around either!
I know time flies, and soon this will all be behind him, but I was so looking forward to lolling about in a warm Balinese pool with Remy giggling in my arms, colostomy-free.
Ah well, we just have to keep going, one day at a time.
Roll on Easter!
Hello! It’s been a while huh? Since I last posted things have been busy but generally steady, and we have just been putting one foot in front of the other. Left, right, left, repeat. And somehow, we have arrived at a mark roughly eight months from the birth of our wonderful Remy.
Such a little spunk! Rem’s eyes seem to be determinedly green now, his hair an ashy blonde, and he is such a splendid, healthy kid. He is starting to know exactly what he likes and dislikes, and at the moment he particularly loves to be sung to. (His Dad will cure him of that, I suspect). Rem is babbling like a brook, enjoys standing up with our assistance, and is truly a happy dude despite all his trials. We are still doing the dreaded dilatations, but tomorrow we will see his surgeon again and get a date in March for his next, and hopefully last, operation. This one will be to reverse his colostomy, and lose the dreaded ‘curry-bag’ for good!
Otherwise, daily life for us is, to put it mildly, messy. Between the two boys I am struggling to keep my head above water some days. Remy has got teeth vying for position in his gums, and has been uncharacteristically grumpy for the past few weeks. Yves, well, that kid is like a tornado in a t-shirt. I recently saw a meme likening life with a toddler to using a blender on high-speed – with the lid off. If you imagine that blender filled with lego, yoghurt, dog hair, popcorn, and plenty of rambunctious 22-month-old attitude, then you have got an inkling of what my floors look like.
Getting a balance of cleanliness/sanity/frivolity/woo-saa calm around here is a real challenge. I know that at the end of the day, it is only how much fun and freedom you have with your kids that really matters, and tedious tasks of tidying, mopping, or self-cleansing shouldn’t take priority over fort-building, drum-bashing, or wiggle-dancing…but when you are forced to answer the door in yesterday’s clothes, with your child’s breakfast in your hair, a pimple the size of a cherry on your forehead, and a manky bib stuck to your butt, it’s probably time to admit that you are letting things slide.
Speaking of things sliding…I have never been skinny, nor have I thought of myself as a ‘big gal’, but somehow I have garnered a waist measurement that would make Honey Boo Boo’s mother blush. Besides pure vanity, I really have to address this as a health issue. It is a sobering thought that Remy in particular will need me around for as long as possible, so dropping off the planet at 55 years old via heart disease or diabetes is really not in my forward-planning. Thus, I have been hitting the gym a few times a week, watching how I eat, and making a consistent effort to get back to a healthier state. It is slowly working, and while I might not be busting out a macrame dress any time this summer, at least I might be daring enough to do it for Yves’ 21st. Payback’s a bitch son 😉
P.S. Did you pick up the bit about the dog hair?! Some of you might know that I have been pining for a dog ever since my beloved Tobi died, just before Rem’s birth. Well, I am so happy to say that we now have a super-sweet chap in our lives. Meet the beautiful Buddy…
I found Buddy online at the Echuca Lost Dog’s Home website, and drove a 5-hour solo mission to meet him. He is only 15 months old, just a pup really, but has very good house manners and is so chilled-out with the kids. I really believe the right dog has found us. I love his amber dragon eyes, the way he sits and waits for a cuddle before eating his dinner, and especially the way he ‘hoovers’ under the highchair 🙂
Let’s hope he survives everything Yves throws at him, (I mean that literally) and has a great time growing up with our boys.
Anal stretching.
It seems I am still haunted by Remy’s birth and our time at RCH, and it is causing a sense of estrangement. In hospital I heard the guttural retching of a little boy undergoing dialysis, watched bald kids with crepe-paper skin being wheeled around to break up the monotony of the cancer ward, and shared elevators with numerous sobbing parents. The visceral effect of illness and disease was more than confronting; it ought to be life-changing.
It is time. We are heading back to RCH tomorrow, bright and early, for ‘Operation Cornholio’! Our wee Remy is undergoing surgery to form a bum-hole and have his downstairs plumbing hooked up, so that he can poop and pass putrid gas like a regular boy. Brings an ironic truth to the expression ‘tear him a new one’…
Ah, you’ll have to excuse the tawdry jokes – I think it’s fair to say I’m freaking out. Remy has won my heart more and more each day since his explosive arrival, and the thought of submitting him to any pain or upheaval is making me physically ill. He really is the most placid, smiling, adorable little soul, and today as I watch him snoozing in my lap I just want to wrap him in my jumper and run far away. Instead, I’m carefully packing his beloved Cookie Monster and assuring him that I’ll be there every step of the way.
All your love and positivity is much needed and appreciated at this time, and while we now have to sit back and entrust Remy to the care of his surgeon and the incredible staff at the RCH, there is one thing that I would like to ask of you; please head over to the Scarlett Rose Support Group page on Facebook and do what you can to assist this brave little girl and her family. They are in a lot of pain and struggling under extremely difficult circumstances, and it would mean a lot if you could extend to them the love you have shown for our Remy. (I don’t know Scarlett’s family personally, but their plight has saddened me so much and I just want as many people as possible to send their love, at the very least).
I will be back tomorrow with an update on Rem’s surgery once he is stable and resting.
As he is now 14 weeks old, it seems high time for an update on our young Rem-bot (as we have inexplicably come to call him). Wow, what a difference a few weeks make! Far from his fragile beginnings, he is now a solid lump, with an edible roll of chub on his arms and legs. The ventouse-induced cone-head has receded, and his tufty locks have been replaced with a bald patch to rival his Granddad’s. Out of the sleepy, dribbling, newborn chrysalis has emerged an incredibly charming and responsive wee chap. Remy has begun to disarm all and sundry with a tractor-beam smile that transforms his face and captivates anyone caught in his gaze. Many times a day I find myself stuck in front of his bouncer, exchanging goofy smiles and coos with him. Basically he sends me la-la, going goo-goo!
Rem’s next surgery is booked at RCH for Oct 31st, and it is likely he will be in hospital for 5-7 days afterwards. We met with his surgeon recently, and she was so approachable and kind – we know Rem will be in the very best of hands. Still, I can’t pretend I am entirely comfortable with wheeling that little body into theatre a second time, nor am I looking forward to dilating his new bottom once it’s formed, but I just have to keep in mind that it is all part of the grand plan for Remy, and a big step towards the momentous occasion we are looking forward to… his first real fart! Funny, the things in life we take for granted 😉
Here is a recent picture, looking very curious and cute (albeit with his mother’s furrowed brow…)
Dear Little Dude,
You have been growing inside me for 18 weeks now, and I have begun to feel you move. It is still months until you arrive, but already I look like I’ve swallowed a dugong. Your dad has started to put his head on my belly and sing to you – I pray you can’t hear him yet, it’s truly terrible. But I do hope you will have his eyes, his hair, and a little of his height. Maybe you will have my complexion…God help us if you get my teeth, it will cost us the earth to fix them. Really I have no idea of what you might look like, I only hope you get here safely.
Despite your Dad’s shocking voice, you should have a good grounding musically. While he murders lullabies from Radiohead, I’m going through a Libertines phase, and before you are born this summer we have tickets to see Kings of Leon, Arctic Monkeys, and Fleet Foxes. So if you come out digging Miley Cyrus that should settle the nature/nurture debate once and for all.
I should apologise though, for the obscene amount of fried and generally evil food I have subjected you to thus far. I can’t control myself, so if you burst into the world with a predilection for KFC and sour candy, you can blame me. Also, I have been less than diligent with exercise, so when you become a lazy teenager who would rather surf the net than walk the dog, I will be temporarily supportive. But please also know that carrying you around in utero, whilst fun at times, is a genuine labour of love that ought to be repaid with lifelong respect and frequent gifts of chocolate and wine. (On that note, it has been 104 days since I had a glass, but hey, who’s counting)
In all seriousness, I think the most important things we can teach you are patience, poise and perspective. (Your dad is rolling his eyes at me about now). One of the most important truths for me is that there are many ways of looking at everything and everyone, and that being open to the possibilities of each viewpoint is the path to balance and fullness of experience. I want you to be able to walk in another person’s shoes so that you can be compassionate and fair. I know we will have to let you fall, but I promise we will pick you up as many times as it takes to discover what makes you happy. I want to help you to surround yourself with kind and respectful people, and for you to be a loving and thoughtful friend to others. While it is true that nobody escapes this life without knowing criticism or confrontation, I hope we can teach you to counter this with grace and strength of spirit.
All in all, I think your dad and I will make a good team. He will be strict (don’t plan on dating or driving until you turn 30), but he is capable of a non-judgmental, all-encompassing love that will ensure you feel wanted and adored your whole life. I know he will be a safe place for you, as he is for me.
Finally, I guess we don’t want to enforce too many hard and fast rules just yet, but there are a few
that come to mind;
1. Never be cruel to animals
2. If you must lie, make it impenetrable
3. Brush your teeth daily
4. Religion and sexual orientation are your own business, but good manners are mandatory
5. Don’t use the ‘c’ word. Ever.
Grow strong little dude, we look forward to meeting you.
Love,
Mum
Since Father’s Day, I have been thinking about what it is to be a parent. My partner Dan is an incredible dad – loving, patient, supportive, and involved. He has endless time and energy for his wee boys, and Yves absolutely adores him. Dan learned his paternal awesomeness from his equally cool father, who is champing at the bit to build our sons a small dynasty, and a cubby house to boot. Indeed my boys have incredible Grandparents on both sides of our family, and kick-ass Great-Grandies too. And, in Dan I have found a strong partner, someone who supports me and returns my love (with interest) every day. Why, then, am I still terrified for the future? What horror keeps me awake at night and renders me a veritable slave in its stranglehold every single day? Being a mother, that’s what.
In the words of Elizabeth Stone, having a child “is to decide forever to have your heart go walking around outside your body”. Gulp. Who in their right mind would do such a thing?! It has certainly become obvious to me since having kids that I will never enjoy a day of peace for the rest of my natural life. Not because Yves never shuts up (truly, he doesn’t), nor because Remy demands permanent and unobstructed access to my boobs. No, these things I expected when I became a parent. (That, and sleep-deprived dementia). What I didn’t expect, and what has knocked me sideways, particularly in the wake of Remy’s arrival, is the unending fear I feel for my children. I fear losing them, I fear failing them, I fear them feeling hurt or sad or confused or angry or let-down or average or unheard or denied or alone or smothered…God-help-me but the list goes on. Having these little lives so intertwined with my own is suffocatingly beautiful.
Sometimes I lie awake in my bed, feeling waves of panic at the thought of being separated from my family. At times like these I have to remind myself that this is the great gamble and purpose in life – to risk love. Not a person I know has had a smooth run; we all suffer and hurt along the way. And ultimately, we must acknowledge that at some stage of the game, we will be parted from those we love. This cannot be helped. Yet we are all guilty, at times, of wandering through life as if it will never end, busying ourselves with trivial tasks and indulgent purchases. Having a partner and children has given me a healthy fear, and with that fear, an ongoing challenge. To balance the mundane needs of daily life with an active acknowledgement of its brutal brevity. Sure, along the way we gotta pay the bills, do the dishes, and remember to change our undies; but we ought to try not to lose sleep over the small stuff. We are here for a good time, not a long time, right?
One Lemonade Life 