Today was a pretty typical day. Seb went to school and tag rugby afterwards. Nothing particularly stood out. He did the “sign” at drop off. One boy asked him if it was true that he had been to Stamford Bridge this weekend – checking with […]
All posts filed under: love
The Label – A Story for Families
Just sharing a link to my new book, which is due to launch soon and available for pre-order. It is only a little book, published by Ivy Press, but I hope sincerely that it will help new parents dealing with a recent diagnosis to see […]
SURVIVING THE SUMMER HOLIDAYS (when you have a child with additional needs)
I have to say, despite my initial dread and anxiety of the 6 long weeks stretching out ahead of us, we are enjoying our summer holidays. As usual, at the end of the term I stood in the playground listening to everyone’s exciting plans with […]
STOP BOTTLE SHAMING – Less Stressed Is Best….
I was reminded this week of a post I wrote 3 years ago when my daughter was born and I thought it might be useful to add to my blog. Here goes: I’ve been meaning to write this piece now for years. 4 years to […]
WHAT DO YOU SEE?
A few years ago, a headline run by The Independent completely took me aback. It made my heart stop and I felt confused. The paper ran with “M&S to feature disabled boy Seb White in their TV Ad” Disabled?? DISABLED boy?? Whaaat? The headline made […]
WHAT A DAY! MIND BLOWN….
A few weeks ago we had a letter home from school about the Midsomerset festival. It is a speech, drama, music and singing festival open to all schools in the local area. There are set syllabuses for each category and age. As I so often […]
The only book I ever needed to read…..
Forget the leaflets and the text books. My goodness, how I wish someone had been able to give me THIS to read the day we were given Seb’s diagnosis!!!! This is the ONE and only thing I needed to read about in those early days. […]
More than a feeling….
My heart is broken right now. We’ve known about the #NIPT testing for ages and my life hasn’t changed at all. I still have my own family unit that I wouldn’t change for anything, the world is still turning and it doesn’t actually affect me […]
The no biggie biggie
I’ve seen Seb’s face / photo in some pretty awesome places over the last few years. But this one is by far the best. This isn’t the front page of a broadsheet, or a packet of chocolate. This isn’t the reception of a high street […]
What does the word “debilitating” conjure up to you? To me, it is a profoundly frail and sick person, unable to do pretty much anything. In my minds eye I imagine someone lying on the floor, or in a bed, desperate for help, pale in […]
Woken feeling really blue. I am fighting a wobbly lip, I have an upset tummy and my heart feels heavy. It’s a feeling similar to when we were given seb’s diagnosis. I want to scoop him in my arms and run away somewhere. Somewhere safe. […]
So often we talk about “balance”. “I am pro-choice, as long as decisions are based on “balanced” information”. Giving the WHOLE picture. Except, more often than not, us parents of children with Downs syndrome really just want to counter balance the harsh scientific and medical […]