A moving and inspiring guest blog today that deals with some difficult issues around children with disabilities.
Vici Richardson (@vicilou) is a long time friend of ours and has written this blog on the pressures of being a mum and learning about disability. She’s working extremely hard to raise awareness of the condition and explain how others can get involved. Here she describes how her son was first diagnosed with Duchenne:
Its funny isn’t it most people take the healthy bouncing baby scenario for granted. When asked do you mind if its ‘pink or blue’ the common answer is ‘ I don’t mind as long as it’s healthy’.
‘As long as it’s healthy.’ It was a common thing said to me throughout both my pregnancies but more so my second. Truth be known second pregnancy I was dying for a girl, desperate for all things pink and frilly and girly shopping trips.
But what happens when we are faced with the situation no parent or expectant mum wants to be faced with? Do we sink or swim or kind of do a frantic doggy paddle crying I am waving but not drowning. To be honest in my experience over the last eight years it’s been a bit of all three and will probably carry on that way.
And if your reading this it’s probably because you have been thrust into the world of disability and you’re either sinking, swimming or doing the frantic doggy paddle trying to stay above water. Where ever you are on this Duchenne journey, grab a cuppa and a biscuit and take some time to read this blog 🙂
I went through my first pregnancy terrified of something going wrong I uttered those five words ‘as long as its healthy’ I ate all the right things through pregnancy, I didn’t touch a drop of alcohol, didn’t smoke, didn’t eat prawns or weird cheese etc etc. I did everything by the book.
12 week scan came and all was well, 16 weeks blood test came back fine, there was no family history of anything scary. The biggest test the 20 weeks scan came and all looked good and what’s more the bump was blue!
From that point on baby blue bump in my eyes was destined to be a rugby player. Funny isn’t it how we build up our own dreams and hopes for our children even before we know their skills and interests.
After an unremarkable 9 months, I even managed to work past my due date, the time came and after a 36 hour labour (yes 36 hours!) I gave birth to a beautiful bouncing baby boy. The picture of health well until he was whisked away to SCBU as his breathing ‘just wasn’t right’. The next day though we were reunited and he was fine.
I had my little rugby player cute as a button and healthy. Sound Familiar?
And for the next 18 months I played with, fed and cuddled my perfect boy. Little did we know that we had been lulled into this false sense of security and our world was going to blow apart.
We all know Duchenne is a cruel disease no one can deny that and if ever said to me ‘ah but it could be worse’ I would want to slap them! But one of the really cruel things as a parent is thinking that we passed the ‘as long as it’s healthy’ hurdle to find out down the line we really haven’t.
Most kids aren’t diagnosed till 3. Mine was 18 months thanks to a great health visitor and physio. It’s a two edged sword isn’t it 3 years of blissful ignorance but does that then make diagnosis even harder as you will have built up more dreams more plans none of which take disability into account.
To read the blog in full please visit: www.duchennenow.org/mums-blog
To find out more about the condition and what’s being done to help click here