Let's start afresh! I'll be honest, I lost my blogging mojo. We've kept Violets FB and Instagram page going but posts are generally small. I feel it's time to get back on track with sharing our journey in a more meaningful way. Through more detailed posts and giving a clearer insight into our struggles, adventures … Continue reading It’s been a while
Early on I was reluctant and ashamed to ask for help. But my hand was forced. I had amazing help from my family and best friend in the early days when Violet would scream for 12hrs a day and I physically couldn't care for Henry too. As our journey has progressed I have accepted and … Continue reading A plea for help
I can’t stop staring at Violets beautiful unblemished skin and feeling physically sick that she will be gaining scars next week. A long incision scar and the GTube insertion site too. The decision to start tube feeding was brutally hard for us in January. But we have always known it’s the right decision, it still … Continue reading Surgery
After talking to a good friend of mine, a fellow SEN mum it dawned on me how I had been in the "in between" all this time. No wonder I felt so isolated. Our "in between" consists of living life as a Mum to an ordinary child and a extraordinary child. Where the groups designed … Continue reading Somewhere in between
Epilepsy, you are evil. I hate you. If I could hunt you down, I would. Our sweet girl doesn't deserve to suffer at your hands. Yet you repeatedly have her in your clutches. Dread fills us at the first sign of sniffles or raised temperature as this signals an inevitable visit from you. You have … Continue reading Epilepsy you are evil
I hate to say it but our life now includes regular hospital stays and it's not unusual anymore. I know so many nurses and doctors by name, I feel at home on the children's ward. Each stay has been different so far but there has been a recurring theme. It's involved us experiencing a new … Continue reading When you think you’ve been scared before
I'm a boy and you're a girl, twins forever and friends for life. We shared Mummy's tummy, it was our cosy home. Then into the world, our journeys begin, together, never alone. You and I are different you see, I like cars and trucks while you like ponies and princesses. You like pink, I like … Continue reading Siblings – me & you
When you've reach a breaking point it seems that all hope is lost, you've failed. The worst part, it's not you that you've failed, it's your precious daughter. Since being born it has been a monumental daily effort to hydrate our sweet girl. No suckle reflex meant months of licking the teat and feeds lasting … Continue reading Hardest by far
A naughty little left arm and hands adventures. Flinging themselves around, doing all kinds of dance moves. The life and soul of the party. Always ready to get involved in the action. Whether that's poking eyes, scattering toys as far as the eye can see or causing general chaos and mayhem. Amused by knocking the … Continue reading Leftie
We've had a large amount of specialist equipment come into our lives. From bath seats, a specialist trike, a seating system, gait trainer, standing frame, buggy, GoTo seat, Scooot etc. All of these things I have embraced with open arms, I have only ever seen them as much needed aides. My husband and family have … Continue reading Bed Dread
