I felt like I was staring down the tunnel of forever, with nothing but blackness, there was no end, only darkness. And then it happened I was driving when it popped up on the dash "Service due" And that was it The beginning of the end
And now, as I sit to write this down, they've finished their snack and are happily playing. Reece quietly doing the shape sorter that Ella still struggles with, and Ella, playing with a stuffed toy and a car thing that Reece has grown out of and it clicks. "She's so far behind"
So your child has just received a diagnosis.. Welcome to the club that no one wants to be part of, but I can promise you, That this club, with all its ups and downs, is full of amazing, inspirational and strong people.
Having a special needs child has been a journey unlike anything I could have imagined, there's Been the lowest of lows, but also the highest of highs. Ultimately Ella has taught me so much, and having the honour of being her mum has been so rewarding. Here's what she's taught me.
This morning, we were all up early (thanks Reece) and ready so I figured, fuck it, we'll head off half an hour before we usually do, it's the last day of school. We weren't even past our property line, that it hit me She can walk!
When Ella was diagnosed with cri du chat, I was told She would never walk. This was a huge blow, but as I learnt more, I realised with physio it might be possible for Ella to be able to do something the 'experts' said she can't - walk
7 years ago I was still sitting in hospital, with my tiny baby that was born 3 weeks earlier, with no answer, no hope and no idea. The drs had just started talking about genetic testing, I felt like a child, lost and alone.
I came across this article a while ago and I wanted to talk about it. The article addresses why so many special needs mums 'don't work'. That is, don't work outside the home. the work that goes on behind closed doors is something people that haven't been in the situation probably don't understand. All mums Rock, and we should just stop with the judgement.
What I wish I'd been told about having a baby after a special needs child. The decision to have a baby after Ella was not one I took lightly, there was just so much to consider. Read more here.
Here is all you need to know about Cri Du Chat, a rare genetic disability that most people have never heard of! Cri Du Chat awareness week is coming soon, once you read this, you'll know more about it than most of the professionals I've seen!