Photography by Ben (Daddy-o) Love
Rebecca is one of those women I have long admired for the love, positivity and pragmatism that shines through in the face of challenges. As well as just being lovely, she is clever, warm and thoughtful, and someone I know I can turn to if I need some considered advice. Thank you, Rebecca, for sharing part of your parenting journey here with us today. ~ Annie x
Ryan was born in June 2011. I’ve always felt child birth is altogether surprising enough and I’m way too impatient to wait so long until I find out whether our baby is a boy or a girl. From 20 weeks we knew we were having a little boy, a perfect match for his big sister. Within weeks he was already known by name by our family and friends, with everyone excitedly planning for ‘Baby Ryan’ to arrive. The day he was born was more surprising than I could have imagined.
Regardless of the many scans I had during my pregnancy, Ryan had a few secrets to reveal. The first, most apparent one was his cleft palate – a surprise because it didn’t show up on any scan even though we’d looked carefully for it given my babies are at higher risk for a cleft. The technician had even zoomed in on his face with a ‘look no cleft’ when I’d asked her to check. I’ve since found out cleft palates rarely show up on ultrasound.
The next surprise revealed itself in many ways – his floppiness, small close set features, low set ears and almond shaped eyes. We were very quickly advised that there was a good chance he had Down Syndrome, a fact that was confirmed several days later using blood tests.
The next week would reveal his final secret, a heart defect no one had suspected.
The next few months were spent learning to feed our son, expressing milk like crazy and learning to navigate a new world of doctors and therapists. We had new diagnoses to deal with too – nystagmus, a squint in both his eyes, and a mild-to-moderate hearing loss. We spent months learning what Down Syndrome is, understanding his various medical conditions and figuring out how to best help Ryan meet his milestones. Most importantly we fell deeply in love with our son. We discovered his enormous smiles and contagious giggle and marvelled when he started meeting his milestones, often exceeding everyone’s expectations.
Then shortly after he turned one our world fell apart. The worst fear of every parent of a child with Down Syndrome, that their child will be the 1 in 95 to develop leukaemia, became our nightmare. We were devastated. It’s hard to describe the horror of being told your baby son has cancer. I didn’t know then the things I know now – that kids with Down syndrome respond so much better to the chemotherapy or that the survival rate of Ryan’s type of leukaemia is more than twice that of his 46-chromosome peers. At that time I just knew that chemo is poison, and that cancer treatment is a hard, horrible thing to put your child through. We uprooted our family, moving to Melbourne for seven months for his treatment, dragging my mum with us for support.
We did the best we could to create a normal life for our kids. We were amazed at how resilient Ryan is, how often he surprised the doctors and us alike with how well he coped with his treatment. All up he did six rounds of intense chemo, suffered three major infections, one of which put him in ICU and received 26 blood product transfusions. It was a hard, stressful time in our lives, but not one devoid of joy. We realised the value of days not spent in hospital and were determined to make the most of the ‘big city’ opportunities we don’t get at home. Then one day it was all over. Ryan was in remission, he’d finished treatment and we could all go home.
The 20 months since then have been busy. Three surgeries – to remove his tonsils and adenoids to relieve sleep apnoea, his cleft palate repair, and surgery to straighten his eyes. Numerous trips to Melbourne, appointments and constant blood tests to ensure he hasn’t relapsed. Endless hours of therapy. Ryan has learnt to sit by himself, crawl, stand and walk. He started signing to us, counting and talking in multiple word sentences. He and his sister have discovered the joys of playing chasey together. He’s grown from a charming chubby baby to a 3 year old with attitude and a terrific sense of humour. Our pride in him, our daughter and our family is immense.
One day I realised – we live the life most people fear when they get a prenatal diagnosis of Down syndrome. The heart defect, leukaemia, surgeries and therapy. Lots and lots of appointments. And now that it’s our reality, I wonder why it strikes so much fear into people that the certain death of their much wanted baby through abortion is preferable to the life we lead. I wonder why I thought it might be too hard or a burden when I first found out our little man came with a bit extra. To be honest, I now wonder what all the fuss was about. Why are we so frightened of disability?
Here’s the thing – if you do have a child with Down syndrome, it’s really unlikely that they’ll have anywhere near as many medical issues as Ryan does. But even if they do, their life and yours won’t be filled with suffering, your days won’t be filled with regret for the child you have and the life you lead. There will be challenges but, if anything, your life will be richer and fuller than it was before.
Ryan danced his way through seven months of chemotherapy. He lives life with joy and passion. He embodies determination. He’s taught us so much about the value of life, the importance of positivity and joy. Our life is good. He has never suffered from Down syndrome and neither have we. If anything, Down syndrome has deepened our experience of life and opened the door into worlds I never knew existed. It’s given me some of the best friends I’ve ever had and brought people into my life who inspire me with their passion and courage. I’m a better person and a better mother for the gift of our son. If I had a choice between that mythical ‘perfect’ baby we all expect when we’re pregnant and Ryan, I’d still choose Ryan every time.
And no, he won’t be living with us for ever. He’s got until 25 to find his way in the world, just like his sister….
Rebecca lives with her husband and two children in Tasmania. She is an environmental scientist who enjoys the many benefits of working from home, including spending most of her days wearing ugg boots and being interrupted frequently by little people. She also enjoys the luxury of a full-time stay at home husband who’s handy in the kitchen and takes control of the mountains of washing generated by her family every week. In her spare time she’s on the Committee of Down Syndrome Tasmania and is enjoying taking on a variety of volunteer roles to support families of people living with Down syndrome.
Thank you to Belinda for continuing to help us find solace and serenity in amidst our busy lives. This is the third post in our ‘Monday Meditation’ series in October. If you’ve missed our previous editions, you can find Belinda’s first post here and second post here. ~ Annie x
Ever experienced the feeling of being stuck? Stuck in your thoughts, stuck in a way of living that’s not working for you or just stuck in a job, a place or relationship you’ve outgrown?
It’s a powerless feeling, isn’t it? Often when you’re stuck in just one area of your life it can end up affecting all the other areas of your life and your overall happiness. As humans we can have a tendency to subconciously focus our energy on the things that are not going so well, rather than all the other areas that are ticking along quite nicely.
So, how do we change the things that we feel stuck in without dwelling on them and becoming negative?
One way is through meditating on mantras and using the power of positive energy and thinking to move some of our ‘stuckness’ and shift our perspective on some of our inner turmoils and outer problems.
I’ve only just recently started to work more with mantras in my personal meditation practice and have found for me it has been a really effective way to work on some areas in my life where I feel stuck.
I find that focusing on a positive mantra can help me centre while I’m meditating and then be more aware of how I want to be and behave when I’m not actively meditating. A mantra can be a phrase or a word that means something to you – the simpler the better. For example, if you’d like to inject more calm into your daily life, your mantra may be something like ‘I am calm’. This is your anchoring phrase, the phrase you repeat in your mind, while focusing on your breath. You may also want to put it up in places you can see around your house to remind you, particularly when the kids are driving you crazy and it’s not yet 9am.
To come up with your mantra, have a think about the things you’d like to attract in your life rather than what you want to remove, as the more positively you can word your mantra the better. So, instead of saying ‘Stop acting out of frustration’ you might want to say ‘I am ease and grace’.
Personal mantras can be very powerful and they’ve definitely helped me feel less stuck this year and move towards living a mindful and happy life. There are a whole heap of sanskrit mantras, which is the language of yoga, that are very powerful in shifting energy and thinking too. I’ve done some of these in yoga class and online meditations and find them very effective (if very hard to pronounce at times!). The simplest of these is chanting Om – which is said to remind us of our connection to the divine and each other.
I’d really love to hear what you think of mantras and if you’ve used them successfully in your life. Feel free to share yours if you feel comfortable. If you enjoyed this post, I’d love to hear from you, so please leave a comment below, pop over to the blog or join me on facebook, twitter or instagram.
Belinda is a journalist, yoga-addict and mother to two boys, always searching for ways to live a purposeful and stress-free life. Join her over at her blog Save Mum’s Sanity in celebrating the perfectly imperfect journey of motherhood.
As much as I love being at home with my children, escaping on occasion is also quite good for the soul. This week (with the help of a lovely friend and my mum to juggle my children), I was privileged to attend The Future of Leadership conference and came away feeling so inspired. So much genius in one room, it was pretty darn a-mazing.
Amidst all the gems, there were so many references to the power of storytelling and personal connection. I have felt so blessed over the past 18 days to share stories from around the Down syndrome community. I just wanted to say thank you to all those who have entrusted us with your stories and shared a piece of your heart here in this space. Thank you also to those who have graciously read and received those words into your hearts. I feel honoured to witness the exchange of words, love and encouragement throughout October so far. And there is more to come.
With love x
nicholas: You were in rock-throwing heaven when we had our little family adventure to an out-of-the-way creek over the weekend. Unfazed by the cold water, you were happy to wriggle out of my arms and explore, delighted to get soaking wet and throw every available rock into the pools of water. Moments like these confirm to me that you aren’t a baby anymore. You love getting amongst the adventure.
sam: While you’re a bit out of sorts while on steroids at the moment, our attempt at a strategy to keep you active and distracted this weekend seems to have worked pretty well. You and I enjoyed sneaking out for an early morning walk/scooter ride to a local café on Saturday morning, and we all had fun going on our adventure to the creek. When we picked you up from a friend’s birthday party this morning, it was nice to hear a few of the parents comment on what a lovely boy you are – even when you’re on edge, your inner beauty shines through.
charlie: While you would have much preferred to stay in your pyjamas at home than go on this ‘family adventure’ we kept rabbiting on about, your excitement was tangible from the moment you spotted the rocky creek bed and knew you had a new world to explore. You have been extra cuddly lately, and we’re loving all the affection. I love that you snuck into our bed as the sun rose this morning, snuggled into me and went back to sleep.
Joining in the 52 Project at Practising Simplicity ~ a portrait of each of my boys every week in 2014.
Portraits this week by Daddy-love.
I consider the fact that Nicholas has had osteopathy treatments from a very early age a ‘happy accident’. My sister is an osteopath and one of her friends and colleagues, Sharnie, asked if she could treat Nicholas as part of a university assignment. Nicholas and I both fell in love with Sharnie and happily continued having regular appointments, and it was only later I read more about the benefit of osteopathy for patients with Down syndrome. Our whole family receives and loves osteopathy treatments, but I have been particularly impressed with very visible results for both Nicholas and Sam, whose post-Leukaemia limp significantly reduced after his first osteopathy treatment post starting chemo. As well as being so lovely, Sharnie is super clever and I am grateful that she is able to share some of the scientific background behind osteopathy treatment for children with Down syndrome. ~ Annie x
Osteopathy is a form of manual healthcare that has a holistic approach in assessing, treating and managing the structure of the body and the way it functions. Osteopaths are five years university trained primary health care workers, with a thorough understanding in anatomy, physiology, pathology, general medical diagnosis and osteopathic technique. Using skilled evaluation, diagnosis and a wide range of hands-on techniques, osteopaths can identify important types of physical difficulties in the body.
A paediatric osteopath uses the application of the these osteopathic principles to practice and promote the health and wellbeing of babies, children and adolescents. Using specific knowledge of the child’s developing body structure and function, and psychosocial considerations, a paediatric osteopath understands that a child develops best through the interactions between their primary caregivers and other key persons, such as health professionals.
Osteopathic treatment has been shown to be an effective therapy for children with Down syndrome. While it is understood that Down syndrome is a growth disorder due to an additional 21st chromosome, affecting all systems of the body, it presents fundamentally as a disorder of the nervous system. More recently, it has been thought that postnatal hypoxia (a reduction of oxygen to the body, after birth) as a result of upper airway obstruction, contributes to many of the developmental difficulties associated of Down syndrome, rather than a direct impact from the additional chromosome. Osteopaths consider the implications of this new information to help formulate their therapy for babies and toddlers with Down syndrome at this important time in their development.
The effect of the extra chromosome slows the growth of the baby during weeks 6-12 of pregnancy. This slowing of growth causes a shortening of the front-to-back measurement in length at the base of the skull, a region referred to medically as the cranial base. In a child with Down syndrome, two of the bones that make up the cranial base are shorter and more vertically inclined. This near vertical angle affects some of the tissues that attach to these bones and form the throat. The position of these tissues and bones shortens the airway passage from the nose and mouth. This often increases the airway resistance and likelihood of hypoxia. Children born with Down Syndrome can also have a flatter palate within the mouth, a shorter chin, and a smaller septum that divides the nostrils within the nose. These changes can contribute to the obstruction to the upper airway. As a result, children with Down syndrome tend to breathe through their mouth. These differences can also contribute to feeding difficulties.
Other physical differences that are common for children with Down syndrome include absent or narrowed sinuses within the bones of the face. When this happens, it leads to poor drainage of mucous. This provides an environment for middle ear and upper respiratory infections, which can further contribute to additional difficulties in breathing. The narrowing of their airway can also lead to a condition called sleep apnoea, where the walls of the throat close during sleep and reduce the oxygen supply. This lowers the amount of oxygen within the bloodstream. It is thought that when the body does not receive enough oxygen over a sustained period of time, altered development can occur to the nerves within the brain that affect behaviour. This may be why these children can experience learning difficulties, hyperactivity and/or aggression.
While it is unlikely that postnatal hypoxia alone is the complete cause of this pattern of developmental difficulties found in a child with Down syndrome, it is probable that it has some part to play. Osteopathic treatment may be used effectively to reduce hypoxia, by offering a safe, non invasive and effective means of maximising and maintaining an open airway.
In the mid 20th century, osteopathic physician William Sutherland suggested that the bones of the skull and face were flexible, allowing some movement against each other; later, Retzlaff & Mitchell demonstrated that the joints between the bones of the skull and face contain connective tissue, blood vessels and nerves; and Viola Frymann later demonstrated that the cranial bones do move. This movement, or reduced movement, of these bones, especially the cranial base, can be detected and gently manipulated by an osteopath whom is adequately trained in Sutherland’s development of osteopathic medicine. This form of treatment is referred to as cranial osteopathy.
Not all osteopaths treat with cranial osteopathic technique, so it is recommended to request this treatment technique at the time of booking the initial consultation. While not all osteopaths treat with cranial technique, other gentle osteopathic techniques applied to the neck and chest can assist the drainage of the sinuses, further assisting with the breathing difficulties that children with Down syndrome can experience. Osteopaths can also help with the development of muscle tone, through a combination of movement therapy and manual osteopathic technique, in assisting children with Down syndrome to reach their motor milestones. This can be a useful addition to the other therapies children with Down syndrome may receive.
Osteopaths are covered by most private health funds and also by the Medicare Chronic Disease Management (CDM) scheme. To locate an osteopath, either access the Osteopathy Australia website and enter your postcode, or the Southerland Cranial Teaching Foundation.
Sharnie McCooke graduated from RMIT University Melbourne with a Bachelor and Masters in Osteopathy. With a passion for paediatric and perinatal osteopathy she is also an internationally qualified Lactation Consultant. Sharnie is the Director of The Brisbane Children’s Clinic that is currently practicing at Osteocare in Nundah. Outside Osteopathy, Sharnie enjoys yoga, gardening and swimming.
Tonight, I have the pleasure of sharing the raw and unfiltered words of the man I am lucky enough to call my husband and the father of our beautiful boys. Our journey hasn’t always been easy, but I am thankful to share this crazy life with someone so calm, clever, compassionate and committed. I know it was hard to get these words from your heart out into the Universe, so thank you my love. ~ Annie x
At the risk of stating the obvious, being the father of a kid with Down syndrome is different to being the mother of a kid with Down syndrome. I say this not as someone who has experienced both perspectives (having never been the mother of a kid with DS), but as someone who has realised that we all have different ways of viewing and engaging with the world, and things just work better if we recognise and support each other in these differences. Even better yet if we are able to see and use these differences as a source of combined strength and resilience.
As a man, pregnancy and childbirth has always mildly terrified me, and the diagnosis (are you allowed to call it that?) that my wife was pregnant with our third brought with it that now familiar knot of anxiety. She on the other hand ascended into a Zen state of quiet satisfaction as her world continued to shape itself quite nicely indeed into the vision she had always had for it.
When we received prenatal confirmation of T21, neither of us coped overly well. Her world of quiet satisfaction and confidence came crumbling down, as my fears and anxieties were given a name and began to crystalize before my eyes. I don’t think I have ever cried so much in my life, and hope I never have cause to again. My world splintered even further as I felt my wife and I moving apart and becoming isolated from each other as we each worked through the process of grief in our own way.
I felt about as isolated and lonely as I think a person can feel. I desperately needed emotional support, but the one person who I needed the most was not there for me. She was too busy fighting for her own sanity to help with mine. As I watched her spend time with her family and friends, talking, coming to terms with our news, forming opinions and making decisions, I became even more isolated. She didn’t need me. She had an amazing support network around her that had nothing to do with me, nurtured with care and devotion over the years, and now proving its worth. I had no such thing. As with so many men, I had committed so fully to my work, my wife and my children, that I was now stranded without any hope of the perspective or support of others.
Or so I thought. At the point where my days were darkest an old friend who I rarely see reached out to me. I spent the next two hours pacing my back yard, confessing my deepest fears to him on the phone, half the time unable to speak through the tears. After this I was still not alright. But a light had been turned on. I could start to see that I wasn’t as alone as I had once felt, and I could start to hear the words of concern and offers of support around me.
My world had splintered and fallen apart. I had become lonely and isolated not only from others, but from my wife. But now we began to move towards each other again and we lent in. We rediscovered each other. We were now able to start to see the world around us once more. We were able to listen to each other’s fears and hopes, and to see the differences and the similarities, draw strength from that and start to move on.
Having a child with Down syndrome has changed who I am, and how I see the world. It has given me perspective and empathy, love and resilience. It has brought me closer and strengthened my relationships with my children, wife, parents, family, friends and neighbours. It has shown me who will reach out when I need help, and who won’t, and importantly, it has taught me that needing and accepting help is not a sign of weakness.
By day, Ben runs Grassroots IT in Brisbane and by night, he transforms into Daddy-love. If he can squeeze any time in between his family and his business, he loves running, gardening and photography (when he can wrestle the camera from his wife’s hands ;).
Meeting Lucy was one of those Universe-conspiring moments. I stumbled upon her blog one night whilst feeding my baby and I immediately felt connected to her words, beautiful in their simplicity, describing life as a creative spirit and mother of two small girls. It wasn’t until later that I discovered Lucy has three sisters, one of whom has Down syndrome, and I realised we were both part of ‘the club’. Thank you Lucy and Emily for sharing stories of sisterhood here with us. I am honoured. ~ Annie x
My younger sister Emily is married, lives with her husband, works at a local café and has two fish. She and her husband also both have Down syndrome.
When we were teenagers Em used to ask me: “Do we look alike? Will I ever get married? Will I have babies? Will I be able to drive?” I used to fend off her questions: jolly her along with dreams of being an aunty to my children, to being so busy helping me that she wouldn’t possibly have time to do anything else. I look back now and think – how patronising.
While our family always told the world she could do anything she could dream up, secretly, behind hushed hands and whispered questions, we wondered if it were true. Not because she wasn’t capable. Because the world, and the people living in it, might not allow it.
As we grew up – four sisters – we all began to make choices as to which direction we wanted our lives to take. Emily was no different. She came to realisations about things she would like to try and do. And with some additional persistence, surrounded by her family and a great support team who truly believe in her potential and right to choose what she wants in life, choose she did. The day I stood at the front of the chapel as her Maid of Honour, and watched her walk down the aisle towards her future husband, I felt overwhelmed with a sense of righteousness and pride. I looked around at the teary-eyed faces of her closest friends and family – people who believe in her through thick and thin. Ultimately she makes things happen, by actively choosing and following certain paths, but the support of the people around her was, and is, absolutely immeasurable.
I am so immune to her difference I forget that for some people it is amazing or wonderful or strange that she is married and works in a paid job.
Quite literally last week someone asked me: “So does she live at home with your parents?” When I stated that no, she lives with her husband, they were shocked. After some more discussion about her life I was surprised to hear, “Oh, that’s so sad.”
I didn’t know how to take it. I never think of her life as sad and thought it odd it might be seen this way. Some part of me actually preferred hearing a comment about sadness rather than the nervous, gushing, “Oh my god, she’s so cute!” I find it difficult to hear my sister reduced to a stereotypical image of a ‘cutie’ with Down syndrome cuddling inappropriately and dancing and loving music. (I have never actually met anyone who doesn’t like music… have you?) There was something real and honest about someone seeing an element of sadness, which is probably there if you look hard enough at anyone’s life.
A number of years ago Em asked me why things were so easy for me. We both cried and cried and I can’t remember what I said. But I’ll never forget her words: “How come we’re so different? Are we the same? Why is it so easy for you?”
I can’t tell her why things are the way they are. Although I know now she just needs me to listen. To listen and to act. To rally up the support needed. And with the right support, anything is possible.
This much is true.
My life is forever impacted having Emily as my sister. I am forever impacted. I don’t know who I would have been, who I am, if it wasn’t for her. And I can whole-heartedly thank her for that: for teaching me about difference, about values, about life.
Em is now planning her next steps towards a career in childcare and we are behind her all the way. I asked her to share some of her thoughts about life, marriage and Down syndrome:
Why did you want to get married?
I wanted to get married because I really love the man in my life and I’m so glad to have him. Being married gives me a lot more confidence. It’s a wonderful thing.
What would you tell other people with Down syndrome or other disabilities who wanted to live with someone they love?
I want to tell them: ‘Would you guys ever believe in love at first sight?’ And hopefully for most of them it will be yes. I did believe that one day I would find a guy I would want to marry, and he would be the man of my dreams.
What if they felt like they couldn’t live out their dreams? What would you say?
Well I might say that’s not true. Everybody can easily get married or do anything. I know they can. We just have to believe in each other. Also, if they want to get a job at a café or chemist or any kind of job they want to get – it’s their future.
Lucy is the mother of two small children and in between kinder drop-off and working part time at a not-for-profit, she occasionally finds the time to write. She is passionate about disability culture, community development, parenting, birth choices and simple living. She blogs at Notes for Emily and Motherwho. You can also find her on twitter @hellolucybain and instagram @motherwho.