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.
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.
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?
1 in 300 chance, they said. It’ll be all good, they said. Amnio Schmamnio, we said. Well here he is, our incredible little ‘1’.
Little Remy, one day old
When you are pregnant all sorts of numbers and statistics are thrown at you – some you pay attention to, and others you don’t. One number that might surprise you however, (I know it shocked the pants clean off me) is that in Australia, around 96% of all foetuses prenatally diagnosed with Down Syndrome are aborted. Now, I don’t plan to cast any judgement, nor will I weigh in with a hard-and-fast view to try and sway your opinion on this very delicate issue, but let me run you through the next stage of Remy’s birth story, and then we might revisit the numbers again…
After Rem was born, I nearly skipped back to the ward pushing his little plastic crib. I was absolutely buzzing, delirious with pride and joy at the birth of another beautiful son; a perfect partner in crime for Yves. I sent off some text messages to friends and family;
“Um, I just had a baby! His name is Remy, he’s early but very well. What the hell just happened?!”
We were shown to our single room, very nice, thank you. I perused the menu for the next day, eventually sending Dan home with a list of essential items, and then Remy and I settled in for our first night together. We had a lovely view looking south across Melbourne city, and I remember gazing out at the Saturday-night lights, thinking of all the people out on the town, tarted up and aiming for trouble. As I looked down at the swaddled little bundle beside me, leaning in to kiss his squishy nose and hear him breathe, I felt completely content with my quiet family life.
Morning came, and so did a wave of hospital staff. Blood sugar level tests, formula feeds, newborn heel prick test, hearing test, vaccinations – Remy was a proverbial pincushion, and the day has scarcely begun. I spoke to my mum, sent off a few pics, and waited for Dan to come back. The plan was to spend one more night to establish breastfeeding, then scarper home to begin our life as a family of four. Ah, the best laid plans. At lunchtime a paediatrician arrived to check Remy over, as at 36+5 he was deemed a ‘premmie’. While I ate a pallid pile of hospital grade mac’n’cheese, the woman who would momentarily destroy our world lifted Remy’s bottom, parted his dimpled cheeks, and declared “oh, no anus”. It was one of those moments where you aren’t sure whether to giggle or cry – her declaration was too blasé to even comprehend. I paused with the fork halfway to my mouth as Dan walked into the room. The doctor explained that she needed to refer this to her superior, then ordered the midwife to cease feeding Remy immediately, and scuttled away. The senior paediatrician came, noted Remy’s lack of bum-hole, the extra skin at the back of his neck, and general floppiness when held, and within half an hour we were in the SCU, authorising genetic testing and wondering what the hell happened to our early exit strategy.
As I sat by Remy’s bedside watching the doctors fit a nasogastric tube and drain his tummy, two things kept running through my mind. Firstly I fretted that he would never marry, never know the joy of holding his own child. Tears began to flow, and I recall feeling a little angry and defensive. I resolved that we would take our kids and flee to the country, where life is simpler, less competitive, slower paced. Then I recalled the old adage my tough-as-nails Grandfather used to pull out when I wouldn’t finish my dinner; ‘If you don’t eat, you don’t shit – and if you don’t shit, you die.’ I discharged myself as a patient, and we steeled ourselves to stay in the moment and fight like hell for the life of our precious child.
After a long quiet wait we were transferred to The Royal Children’s Hospital by ambulance. We were taken to their SCU where Remy was to be monitored for the night and prepped for surgery the following day. A bowel specialist sat us down in a stale interview room and detailed Remy’s condition. Known as an imperforate anus, it most commonly occurs in children with Down Syndrome, as the midline tends to suffer from various malformations. We needed to understand that there would be no quick fix – the next year of our lives would involve repeat surgeries, the first of which would be a colostomy. He told us it was a straight-forward procedure, but to prepare for at least several weeks in hospital. I honestly can’t remember the rest of that evening, but somehow we dragged ourselves home without Remy, and as a new mother, that felt so very wrong. What I do recall is letting Yves sleep between us, and how necessary it was to have him close.
Remy was transferred to the NICU first thing the next morning, and we quickly realised what a special place it was. Incredible nurses, doctors, and support staff were there to ease the way for us, but it was always going to be a tough day. We had to wait for a theatre spot to come up, then react quickly. At 10.30am, our nurse got a call to say the team would come for Remy in ten minutes, and it was a huge rush for her to prep him in time. They arrived in five minutes, and before I knew it we were wheeling the bed down the corridor. I cried a lot; despite it being ‘straight-forward’ surgery, I was very scared as he was so tiny and weak. Halfway to theatre and already deep into a box of tissues, we were called back by a doctor I hadn’t yet met. He wanted to do an ECG on Remy before any surgery, as, despite no abnormality being detected on listening to his heart, no risks could be taken by neglecting to do a thorough exam. We turned back to the NICU, and waited while the scan was done. It took a long time, the result being that the theatre spot was taken and we had to wait for another opening. At 1.30pm we were called again, and after saying goodbye in pre-op, Dan and I left Remy in the care of the surgeons and went to our hospital accommodation to wait.
It took about 3 hours before we received a call to go back up to the ward. Remy was already there, stabilised by a ventilator and IV fluids, which we had been prepared for. Our nurse Amanda was again very reassuring, but when she told us a consultant would be in shortly to talk about the surgery I could see she was a little nervous. We were told that Remy’s bowel had perforated at some point prior to arriving in theatre, and that the anaesthetist had struggled to get a line in. The contents of his bowel had spilt into his system, but had been quickly contained and cleaned up, indicating that it had happened very recently. Any further delay in surgery might have resulted in sepsis, and potentially been fatal. This is when I quietly and completely, ‘lost it’. It all hit me very hard, that my baby had been in terrible pain without us there, without us even knowing. I was still bleeding and aching from delivering him, and yet at such a terrible moment he had been beyond my reach. I felt redundant and helpless. Another doctor I hadn’t met wrapped her arms around me and let me cry for a while before gently sending us away to get some fresh air and steady ourselves a bit. Sitting in the hallway with Dan, the biggest dose of perspective I have ever been gifted hit me like a hammer between the eyes. Nothing mattered anymore, except that Remy was not alone, nor suffering pain. So he may have Down’s, he may look a little wonky, he might do things a lot slower than his big brother. But as long as we live he will have our unwavering love and protection, and in life that is as much as we can give, and hope for in return.
Dan, Yves, and Grandma Rae with Remy post-surgery, 3 days old.
Over the next two weeks Remy recovered well, going from strength to strength. After a week he went down to the general ward, where I could stay overnight with him. Dan and I learnt to change his colostomy bag and pump-feed him expressed breast milk, in order to take him home as soon as possible. On 15th July we did just that, and he has thrived ever since. On day one at home he breastfed for the first time, on day two he finished a whole bottle orally, and on day three he tore his NG tube out for good. He is a boy who knows what he wants; boob and cuddles. I’m happy to oblige with both!
So, Remy poops in a bag (for now), and has an extra chromosome. He has had a rough start, but he’s proven he is strong and has so much love behind him. Ultimately however, it is him that will go under the knife again, his body that will have to endure the rigours of surgery and recovery, not ours. While we may feel physical and emotional distress along with him, this is Remy’s cross to bear. Would you knowingly bring your child into the world facing such challenges? 96% of the time, Australians choose not to. Many children with DS have major heart issues requiring involved surgery, still more have cleft palate and lip issues, which complicate breathing and feeding to a dangerous extent. It is a huge burden to put on them, consciously, yet who are we to deny life when nature itself grants these children the chance to live? There is no easy answer, but for my part, I am enormously proud that Remy is here, and grateful to him for fighting so hard to remain by our side. It is our turn to fight for him now, to give him every opportunity to be happy and healthy, with a network of people to nurture and protect him. This is what our wonderful parents did for us, enabling us to pass on such love to the next generation. It is the basic cycle of life, and our core truth as a family. To love; simply love.
Wow, look at those lips! I have had the privilege of spending a rainy day at home snuggling with this little dude and his brother. Let me tell you, with Remy safe and content on my chest, his little breaths warming my neck, there is just nowhere else I would rather be. It’s all going to be oh-kay.
I suspect this little guy has a lot to teach us, but right now he’s just plain sleepy. Yawnzzzz.
One Lemonade Life 