Begin at the beginningWell - once you have clicked on the "About Me" and "Daisy's Story/Costello Syndrome" tabs at the top of the blog you will have a bit of background to my life and the daily challenges we face as a family. In the early days a lot of my blog posts were about what was going on in our lives at the time (the blog was started during the early weeks of a what turned out to be a 12 month hospital stay for Daisy), here are a some posts that show what we were going through at that time
It's not the hand you're dealt with, it's how you play it
A Close Call
Snakes & Ladders
Daisy is Home!
Opening my eyes to another world
Finding myself a mother to a child with complex disabilities and needs opened my eyes to a whole new world that I was not aware of previously. I had to give up my successful marketing career and become a full time carer - definitely not in the plan. These posts are my thoughts on what life is like for a carer in the UK.
The world of special needs
Daisy introduced me to the world of disability and special needs. It was a steep learning curve, particularly as not only did she have a rare syndrome so my role was to constantly educate her doctors on what I knew, but Daisy also kept moving the goal posts. Yes, we had a diagnosis, but things were happening to her that were not part of the syndrome.
I wrote this post on Mother's day - reflecting on how different my life was compared to before
I wrote this post about the complex issue of pre-natal testing
And this one is about the frustrations of having to constantly look on the bright side
Not only am I a mother, I am an advocate for my children and I need to ensure that everyone understands that they have an opinion too
Similarly - not being able to speak is not the same as not having anything to say
And this is one of my favourite posts, all the things I wish I had known when Daisy was born
This blog has become my therapy and my friend over the years, it also is a record for my children to look back on and understand how I felt about what was happening. I wrote a post about why I blog, it includes a link to my first ever blog post.
But if you read nothing else in this blog, read this:-
My post about the beauty I see in my girl when geneticists can only note she has "dysmorphic features"
My post about siblings of children with special needs
My post about our determination for Daisy to be a little girl first and foremost, not a label, not a diagnosis