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

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...