When I have one of those days, I irrationally wonder if our luck changed when I agreed to a c-section on Friday, 13th or that time we ran over a single Magpie on our way home from our first night out after having our son. I fully admit to saluting single Magpies (whilst pretending I’m actually sweeping my hair back and muttering “good morning Mr Magpie…” in my head). None of us welcome bad luck do we?
It’s on those days, where I am just about keeping my head above water, I end up thinking about the things I quite frankly don’t like thinking about. And I can’t bring myself to think about it for too long – otherwise I risk sinking and to be honest, it’s that dark a place I’m unsure of whether I’ll rise again.
I’m talking about the future. Getting older – us and Brody. What will happen? Will he still be severely cognitively delayed as an adult? How do we make sure he is happy and that we are able to care for him properly? He will get heavier with age and we will no doubt get weaker in the process.
What happens when he’s a man and doesn’t pass as “cute” anymore? He is still our beautiful baby regardless, but the world can be a cruel place. I just want to protect him from it forever.
I once saw the following on Facebook and I could barely tread water for days. It took me a week or so to start swimming again. Those in my shoes – be warned – it’s a tough one to read.
“The prayer of a parent to a child with special needs is that we see our child live a long, happy life. And that we live just one day more”.
Told you. It hurts because it’s so true. And just what you don’t want to think about. I need to live one day at a time. Take each day as it comes. Live for the moment. The truth is none of us know what the future holds. I just know that I want to be able to look after my children forever. Protect them. Make sure they live happy lives.
I can’t help but worry about when we are gone though. Who will look after Brody? Who will be able to understand him like we do? He can’t talk and I’m not sure the communication passport we made will cut it.
These thoughts fill me with fear, so much so I have to push them to the back of my mind. Until I have a bad day and they resurface. I appreciate there isn’t a loving Mum out there who doesn’t worry about her children. But when you’re a special needs parent, there are so many extra things to think and worry about.
I just needed to put it out there.
One day at a time. We will try our best. We will grow and we will adapt. And we will love them forever.
Just keep swimming like Dory said in Nemo.