New to my Blog? Start here.

I started writing "Was this in the Plan" in 2008. Since then I have written over 170 posts all about my life, our journey with Costello Syndrome, TPN, Epilepsy , Autism and my husband's cancer diagnosis.  There's lots and lots of information here so I have organised some of the posts to  help you get a flavour of what this blog is all about - some are personal favourites and some are popular posts.




Begin at the beginning

Well - 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


Blogging

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





3 comments:

Adora said...

Hi... Hats off... you are really inspirational... I like to read about your journey...and learn to survive...God bless you and your family..
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Meredith Wright said...

Stephanie, I co directed the star trek show with John Gore that Andy was in. Years ago. I had no idea until just now, Jan 29, 2018!that he died. I am so terribly sad to learn this! He was a dear dear person. I just lost my boyfriend to lung cancer 6 months ago. I googled andy tonight because I discovered a letter he wrote at my mom's house. it was sometime after the show, when we all still hoped the show would continue. it was do sweet snd brought back so many nice memories, that i copied it and was going to send it back to him with a belated Christmas card. I googled cause I was unsure of your correct address. Omg. Stephanie, I see you have been doing so much!! I am amazed by you and I haven't hardly begun to read you site or blog. I am going to order your book. I have old pictures from star trek...do you have any? He was wonderful as Scotty. I really DO want your correct mailing address so I can send you things... Love always, my heart is yours, - meredith

Stephanie Nimmo said...

Hi Meredith - I've only just got your comment, can you email me via the contact form on the blog and I'll get in touch, I have loads of pics of Star Trek and we are still in touch with Benny & Peter. Benny spoke at Andy's funeral - I'll google you too to see if I can find you xx

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