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.
I get it. But it doesn’t help to dwell on it, and I’m sure you do your best not to, as we all do. In years to come, they will have experienced so much more and changed themselves, and they will be more capable in some ways. Plus I’m a strong believer that attitudes are changing and there are more kind people out there than lazy/ignorant, so they will have companions and help. Hugs x
Thanks Steph. You’re totally right. I started this one when I was having a bad day and finished it tonight when my brain is back in game face mode and I’m feeling fine. We will grow and we will adapt.x
This is so how I feel daily…….
Massive hug Kim. Sorry to hear. X
Hi , I don’t know really what to say or where to comment but I was just looking for someone to talk today I’ve had my daughter paediatrician today she had a normal MRI normal genetics but still she can’t feed eat her self has a feeding tube and can’t sit up with no sign of it happening soon I just dot know where to put my self I want a diagnosis obv I don’t want anything to be wrong with my child but their is something wrong and I want to know why , people just don’t understand they ask what’s wrong and I don’t even know family don’t understand and think grate tests are clear she’s fine but she’s not really fine is she :/ I just want someone to understand
Sounds like you’re having a tough time. Big hug.
Have you heard of SWAN UK? They are the only UK charity dedicated to supporting families who have a child with no diagnosis. There is a Facebook group that might help you. It’s always good to talk to others that can relate. It’s isolating when you have no diagnosis as you have no answers.
Happy to chat too. Any time. Just send me a message on here on you can pm me http://www.facebook.com/brodymeandgdd
Lots of love to you x
thank you Laura…..yes, I get every word of this xxx