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