Our journey as parents — Scope | Disability forum
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Our journey as parents

Rachel Member Posts: 6 Listener
Hi, I'm Rachel. Ten years ago I became a mum and my world was turned upside down, isn't everyone's? Except my son, Sam, didn't think breathing was important and he spent days on a ventilator. Then, at ten weeks old, an MRI scan showed extensive brain damage and Sam was diagnosed with severe Cerebral Palsy. That day he didn't change but I did.

Being a parent is a tough gig even without the appointments, diagnoses, therapies and medications. Through all of this I have changed. My story has changed me. Like a Russsian doll, I feel there are lots of versions of myself tucked inside me; some of which rarely get to see the light of day.

I recently published a book, The Skies I'm Under, about my bumpy ride into motherhood. I've written a blog for Scope about it: http://wp.me/p3yXmG-3kL

There have been many times I have felt isolated or misunderstood because I can’t explain what life is like for me now. I find it a challenge being both positive and honest in a way the reflects me, my son and our lives.

Do I say I’m a mum, a special needs mum, that my son is disabled or lives with cerebral palsy? There are so many options but none seem to give an accurate explanation.

How do you describe yourself or your child to a stranger?
Do family and friends understand what your life is like now? What do you say to them?


  • OlliHannah
    OlliHannah Member Posts: 30 Connected
    Hi Rachel. Just wanted to say that I loved your blog - it was so moving & well written (particularly the way you described the doctor with the paintbrush painting over your dreams). I can't wait to read the book! Thank you for sharing your experiences so eloquently - you're very lucky to have Sam but he is equally lucky to have you :-)
  • Rachel
    Rachel Member Posts: 6 Listener
    edited January 2016
    Thanks for your encouraging comment. It's funny how many expectations we build up without even realising it. You can read lots more of my musings on my blog www.bornattherighttime.co.uk. I really hope you enjoy the book, Rachel
  • NoraR
    NoraR Member Posts: 9 Courageous
    Hi Rachel, Love your blog for Scope and wanted to connect you with another mum and writer, Donna Thomson. She is based on the other side of the world in Canada and her son Nick is now grown-up but her book is incredible and also such an great reflection, not just on CP and raising a child with it but on how our society values 'care' in general. http://www.donnathomson.com/p/four-walls.html Good luck with the book sales and thank you for sharing your story - It's so important!
  • EllaB
    EllaB Member Posts: 26 Connected
    Wow, what a wonderful blog! You write so movingly and well about your experiences. My mother was talking to me recently about the day my brother was diagnosed with Down's Syndrome. Like you, she said she could remember every word the doctor said ... and that was nearly 60 years ago! She also told me that, of all the leaflets and literature she managed to find on the subject, the only thing that helped her imagine the future was reading other parents' experiences. I'm sure your book will be a huge support to new generations of parents. Can I just ask you, by the way, does Sam have any siblings and, if so, how do they all get along?
  • Rachel
    Rachel Member Posts: 6 Listener
    Thank you Nora, I have heard of Donna Thomspon through a bloggers group I'm part of, although I haven't read her book. I will try and get hold of it.

    EllaB, I find it so intriguing how our experiences can be so different yet the emotions similar. Yes, Sam has two brothers. Jonah is eighteen months younger than him and he struggles to have a relationship with Sam. He doesn't find it natural or easy communicating with Sam. When guided and instructed he does with some success but Sam's communication is very limited and solely related what he immediately wants or doesn't want. Sam and J do snuggle together for a bedtime book most nights still so that's good. Sam's youngest brother is only 9 months old so we'll have to wait and see...
  • rachelcl
    rachelcl Member Posts: 31 Connected
    There are so many people in the world who completely misunderstand cerebral palsy and similar disabilities (including somebody who told me in an arrogant, patronising voice "Scope told me they don't deal with people like you" as well as that CP, hemiplegia etc. are self-inflicted and curable). Thanks Rachel for your blog post - we need as many people to explain to the world as possible.
  • Rachel
    Rachel Member Posts: 6 Listener
    rachelcl thanks for your comment and I am sorry you have been on the wrong end of people's ignorance. I hope there are enough people around you who understand and are willing to listen.
  • Dipka
    Dipka Member Posts: 2
    Is this the place to write to win a free copy of the book? I just joined this website to do this so hopefully this is right. I can't find the blog about this from that link.

    I'm not a parent, so don't have to explain myself to my children! But, to strangers I would mostly just introduce myself using my name. Although because of my disability I talk to people very irregularly. But, until the point that I speak I am 'normal', when I start talking is usually when people work out I am different, with new people I like to be quiet for a while just to enjoy being in a group of people they think I 'fit in' with. But my talking has been improving recently and I can't do that for very long before I want to talk and then get judged and peoples thoughts about me change.


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