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Our journey as parents

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?
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?
Replies
Nora
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...
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.