Oliver and Bee - Living Life With An Extra-Ordinary Chromosome

October is Down Syndrome awareness month. Over the last 3 years I pride myself in giving my all to raise awareness about what is Trisomy 21. Ive shared facts, videos, photos, and stories. This year I have been slack, not because I dont want too, because I think about it everyday, I'm reminded by it every day, but because to a mother with a child who has down syndrome, the truth is each month is down syndrome awareness month. Mums, dads, carers and gaurdians know all too well the lengths we go too to advocate for our children on a daily basis. To some that looks like arguing with a doctor and feeling as if you need to justify your decision around KEEPING your unborn baby because their genetic make up is different to the "norm" And too others its as simple as smiling at a stranger who is smiling at your child, as if too say, "I see you." Down syndrome awareness month is the socially acceptable way of raising awareness about down syndrome. Be...

I asked my partner to take this picture of me and Oliver a couple of weeks ago. With the idea that in this moment I felt like a mum doing her best. We had just returned from a dinner out with family and our reality is thats tubes, tapes, medications and feeds must come too. Oliver had fallen asleep and he had his feed going and as I carried him from the car, upstairs to his bed along with his feed still going and trying not to drop anything, I felt proud, tired, but proud. Proud that we push through and overcome whatever comes our way. Proud that we change and adapt our lives to accommodate any additional needs that arise. Proud that I have an amazing, loving, supportive and helpful partner. Proud that I have a talented, determined, resilient, cheeky little boy. And proud that even though our life is different, its our normal and we are doing a brilliant job at managing it all the best we can. Dont get me wrong, it can he hard too, the stares from strangers in public, f...

Have you ever sat back and just watched your child play without saying anything? A great Psychologist once told me to let my child play on his own, with me still nearby, silently. He told me to sit with him and not say a word unless needed, and be amazed at what children do when given the environment and tools to just be them. Life is busy, and I often find myself caught up in the hustle of life. Constantly reminding myself of what the Physio, OT or Speechie tells me I should be doing to help my son. Always intervening in Olivers play in hopes to make an "at home therapy" opportunity. To give him opportunitys to learn purposely through me. Normally in this instance, I would have sat with Oliver when I noticed him with the book, I would have tried to read it, tried to turn pages with him and in the past he would have become annoyed and ended up moving to another activity. I would assume he didnt want to read. Today I stopped myself, I shut my mouth, and I watched hi...

Before I became a mother I use to read many posts about how when your a mother you become a nurse, therapist, coach, a cook, a cleaner, an entrepreneur and teacher. But oh my it is so much more. I am my childs voice when he cannot speak. I hear what others say and use my voice, in efforts to defend him, protect him, educate others. I use it to take a stand, to advocate and teach. To show him his voice is something to be proud of and to never be afraid to use it. I am his eyes. The one who sees what he cannot. To hide the things he should not see, but to show him beauty, love, kindness and to teach him that in this world we will see things we wish we didnt, but that we can learn from them and make our choices better because of them. I am his brain. To search, learn, browse, have knowledge and remember each and every detail. I have a masters in all things medical that he has encountered in his life. If I do not know, or understand, I make it my mission to find out...

Competition. Where does the constant need for competition come from when we are talking about our kids, or even our parenting? It's something I see on the daily, and quite franky Im calling bullshit. Mums need to support Mums, Dads need to support Dads, and Mums and Dads need to support each other. We are ALL on this crazy journey called parenthood, and not 1 of us really know what the fuck we are doing. We just do it. Whether you have 1 child or 7 children, each child is an individual being and each journey is different. Which leads my to my next question. Why cant we praise each other when we talk about our childs achievements? Why do we compare our kids when their genetic makeup is NOTHING alike? It makes no sense to me. I tell you what, the next time a friend, partner, or parent confides in you about their childs achievement, praise them, hug them, be proud for them. Because the last thing they want to hear is, "Oh yes Billy has been doing that for ...

When we are out and about what do you see? I see a baby looking at me. You stare, you whisper and give a faint smile, It's something I notice from as far as a mile. I hear your words as clear as day, I couldn't do it, you will say. You ramble about someone you knew, "Down Syndrome is given to the lucky few." To which I nod and give a smirk, I can see you are sorry and starting to lurk. I share my story of how he became, You tell me I'm special for playing this game. My eyes roll for I've heard it before, I'm just another mother you've met at the store. We are no different, me and you, Mothers with children both of us two. We both have a Journey, unique and its own, The difference you see is what we have known. Just look and you'll see people all around, Different faces, colours, all shapes and sounds. We've grown to judge by what we see, I strive to show you how he has changed me. ...

Oh what I wish I had said. Hey you, Cashier at Big W, yes you. You know the new mum with the diagnosis of Down syndrome for her baby? Yeh her. She doesnt want to hear about your negative encounters with people with disabilities, particularly down syndrome. Or how you once had a conversation with a lady about how she couldn't understand why people would interact with "retards" or how they "have no future" or that they are "disgusting." Did you think this story would make a mother feel at ease? Did you think it would make her excited for her childs future and the bullying you so openly find appropriate. Yes my child has down syndrome, like many other people that have varying differences, and this does NOT mean they are a burden to this world because of it. Nor does it give people permission to say such foul and hurtful things. People like you are a burden to this society, not people like my son, not those of us that are kind, and loving...

Dear new Mamma with an expectant or confirmed diagnosis of Down Syndrome for her baby, I see you. I see you feel as if you've been hit by a wall when your doctor delivers the news. I see your heart sink and you wonder, why me? I see you sit and overthink, research for hours on end. I see you worry. I see you cry, and grieve, for a baby you thought you had. I see your guilt, for feeling the way that you feel. I see you rub you belly, so in love, yet so distant, so scared. I see you watch and look at others with Down Syndrome, worried for what the future will bring your child. I see you smile when you feel those first kicks and rolls, but wonder, will my baby crawl? Walk? Talk? I see you feeling lost, like you have walked 1 step forward and 2 steps back. I see you hold it all together, I see bravery, love, kindness, and hope. I see a fierce woman, one that would still protect her baby with all of her being. I see you becoming the m...

When I found out I was going to be a mother, I didnt expect to be on the journey I am on. I didnt think this would be my life. Im not any stronger because of it. Im not "meant" to be the mother of a child with T21, it just happened! Having a child with T21 is both rewarding and heart wrenching. I see his struggle, and I see his strength. Hes my happy, loving, gentle, shy and courageous baby boy. He loves to splash around in the bath and make a mess with his food. He cries because he is tired and when hes in pain. He does all the things a typical baby does, but he also does more. He uses all his strength in each and every movement. He persists and never gives up, even though its hard. Hes thrown hurdle after hurdle, but he never stops jumping, running, untill he reaches the finish line. He suffers through pain only we can imagine. Did you know hes been poked and prodded with needles more than 100 times? He bares scars on his chest, his tummy, his little foot, hi...

The last few weeks have been hard. Oliver has been sick and Its taken its toll. But I want to break it down for the people who just dont get it. Please let me help you to understand. I see your eyes roll when I tell you about my son being sick and how having Down Syndrome and congenital heart disease affects his immune system. And I get it.. Ive said it a million times before and your sick of hearing it. But it terrifies me. But what I dont tell you is I suffer major anxiety each time I hear him cough. I wake up and I can see in his eyes that he is not well, and I instantly feel my stomach turning. Because I know how quickly it can get worse. I sit up awake at night staring at his chest, watching it rise and fall, because I know what It looks like to be in respiratory distress from something as simple as a viral infection. I see the doctor about each and every little thing, because I need the reassurance that its not as bad as I make it out to be in my head. I take him to...

As time creeps closer to 21st of March, (World Down Syndrome day.) I find myself reflecting on this time last year and the motions I was experiencing after a diagnosis of down syndrome for my son. I had decided to overcome the fear of Oliver's diagnosis and felt I could do this by sharing with people that he in fact had Down Syndrome. I felt I was holding something back by hiding it from people. I felt like down syndrome was a burden on my shoulder and I didnt know how to overcome it. I made the decision to share with friends, family, and work colleagues, and the parents and children at my work what was in store for us. And let me tell you it was the best thing I did. The support I recieved was unimaginable. The love and strength I felt was amazing and down syndrome no longer felt like something to be ashamed of. I was bloody proud and I wanted EVERYONE to know it! It makes me sad now to think of the feelings I felt during that time and how unsure and afraid I was. But o...

After what was another set back for Oliver, needing to go back onto Hi-flow for the extra support. The team of baby doctors had consulted with each other and decided it was time. Oliver was 3kg and at this point it was more of a risk not to do the surgery. He was in heart failure and he was struggling, he had fluid on his lungs which was managed with lasix. (A medicine that helps to drain the fluid, he literally weed it out.) And he was exhausted, his little heart was working over time to do the job it was supposed to do and it just wasn't cutting it anymore. We moved over from The Woman's Hospital to The Royal Children's Hospital. It was a strange move, very surreal. We had been at The Woman's 11 weeks and as strange is it is, it felt like our home. We knew the nurses, the doctors, our way around the hospital, it was comfortable. Moving to The Children's was daunting, we didn't know the doctors, we hadn't met the surgeons. It was a new social worker and a...

An interesting weekend to say the least! The thing about being in here is that some days are good, and some days suck. Today is that sucky day. And although the good days generally outweigh the bad, the bad hit hard. Each day is different and I never know what to expect. Oliver went into heart failure at 10 days old and ever since he has proven so strong and tough to come this far without surgery. My poor darling is exhausted, he has been working hard with breathing and having desaturations since Friday, he went back onto Hiflow as he was just so exhausted. Its given him a break and he is finally resting after a very restless day. His surgery is creeping up on us and although the thought of my baby having open heart surgery terrifies me, i cant wait for this to be over and him not have to fight so hard anymore. I dont normally write posts like this, I like to share the good things and not the bad, there have been so many hurdles and struggles along the way. I like to be positiv...

Theres something about those raw unedited images of a new mother that gets me everytime! The ones that show the beauty of a woman that has just become a mother with the look of complete and utter love for her child. The look that shows she will always protect her child and put them first. She is completely vulnerable, she wears no make up and hasnt brushed her hair! She hasnt showered or managed to brush her teeth. She is extremely exhausted, sore, swollen, battered and bruised from the journey of her babies delivery. She is filled with a kind of joy that is unexplainable. One that you cannot compare because it wouldnt even come close. The world around her completely falls away and her only focus is the life she has just created. Her struggle and stress from the chaotic journey she has just endured comes to a stop and she finds herself at peace. The fear and worry, wonder and anticipation that have filled her heart for the last 8 months slowly disappear and she finds he...

The week before Oliver was born I had been nagging doctors about forming a plan for his delivery. I was only a few days off of being 34 weeks and I wanted some idea as too how long my little boy had to struggle before the decision would be made for him to come into the world! On the Friday I met up with a few of my doctors who had finally agreed we would book in a c section! Hooray! A plan! I couldnt wait! I was told my babies chance of survival was alot higher and that he "should" be ok. We spoke about delivery being as early as the following week, possibly on the Wednesday. I would go through the weekend as normal and on Tuesday i would have a few scans and check ups to confirm nothing had changed with Olivers heart and growth and that it was safe for him to be born. We got through the weekend fine! Sunday was mothers day and i spent a lovely day with my Aunty who was visiting from Adelaide at the time! She was supposed to fly home Monday night but due to the docto...

At my 28 week growth scan, oliver was tiny, he measured in the 3rd percentile, and was basically the size of a 25 weeker. I then found out ha had severe IUGR, (intrauterine growth restriction) it is when the baby is not growing at a normal rate. During this scan they found I had developed issues with the umbilical blood flow and my baby was not getting the normal amount of blood to his little body, causing the growth restriction. Once we knew about the umbilical flow he was monitored closely to make sure he did not stop growing and that the blood flow through his umbilical cord and to his body and brain was sufficient enough to keep him in my belly. In cases like mine the blood flow through the cord was called "intermittent" this meant the flow would stop and start, stop and start instead of constantly flowing forward. The risk was that the flow would also reverse and start taking blood from Oliver, which would mean immediate delivery. Along with all of this Olivers lit...

I found out about Olivers Heart defect at my 15 week scan, I knew he had something wrong but because he was still so small it wasnt until around 21 weeks that I got an actual diagnosis on what was wrong with Olivers heart. Once we recieved a diagnosis for his heart it was then decided he would be delivered in melbourne. This completely outweighed Olivers possibility of having down syndrome and my focus was on his heart and if my baby would be ok. Oliver has whats called an unbalanced AVSD (atrioventricular septal defect) and he would need a surgery sometime after birth, generally around the 3 month old mark! Olivers heart was always monitored closely, they needed to check growth and make sure it was in proportion to his body, if it was too small that would be bad, and if it was too big that would also be bad. His heart continued to grow at a fairly normal size. Olivers chances of being well after birth were great! I was told he would be ok and his little body would eventually let ...

Once I recieved the diagnosis It really took me a few more weeks to actually accept it. I think because although I was at peace with my new journey, I still knew nothing about Down Syndrome, and what I did know was extremely outdated which I think is what scared me the most, all the unknown. After speaking with a few friends, I began to slowly find connections with a community of T21 mums. I was recommended to a small private group of mums, mostly pregnant or who have young children with T21. At first I think I almost felt worried, I was unsure about this new community of people and their children and I was scared to find out what the future for my child could potentially be like. The best pieceof advice I was given was to take each day as it comes, dont look to far forward into the future, live in the moment and everything will be ok! I introduced myself and recieved and overwhelming amount of support, these woman had been through the roller coaster of emotions that I had be...

Where do I even begin? Well let me start by saying this, while I sit here, admitted to the Royal Womans hospital in Melbourne, far away from home, friends and family, I find myself stressed, exhausted, worried, and scared. I want to share my Journey, my stories with anyone that wants to know how it feels to be in the position I am in, and how to overcome the craziness of it all. So Ill begin a Blog, a place to express how I feel and share my stories with you all. This is my T21 Journey. The diagnosis. What seems like forever ago I remember the day I found out I was pregnant. I remember peeing on copius amounts of sticks and seeing 2 faint, but also very clear lines! A mix of emotions came over me, I was excited and scared for what this meant for myself and my future. I work with kids and I knew I always wanted my own!  I began to tell close family and friends, and it really started to set in and the excitement overcomes any other emotions! I figured I would have an "easy...