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
Surgery
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
Somewhere in between
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
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
Mainstream or Specials Needs schooling
Over the last 18 months we have encountered only a couple of professionals that I trust. Both of them know Violet well and both have told me she will be a "mainstream girl" for school. Violets special needs schools nursery manager told me Violet is very bright, very determined and held back only by her … Continue reading Mainstream or Specials Needs schooling
When you think you’ve been scared before
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
Splashy
We absolutely love our splashy bath seat from Firefly by Leckey ❤️We use it everyday for bathing but in the summer it really comes into its own. We have fun with paddling pools, sandpits, the beach, ball pits, sprinklers and just chilling like a princess in the shade 💁🏼♀️It has been a life changer for … Continue reading Splashy
