When you're a parent - particularly one to a child with disabilities - you go through ups and downs. Good patches and bad ones. Sometimes you coast along in cruise control and you feel like you're winning at this Mum malarkey. You've accepted your child's disabilities and the challenges that they might bring and you just get on with life.
Other times it can literally feel like you're walking against a hurricane force wind. The smallest thing can set you on to a path of sadness, which can lead in to a bad day. Bad week(s) even. Or sometimes stuff just builds up until you want to find the nearest hole and disappear into it. A day off parenting (never going to happen) or an off switch for your brain would be handy (if only).
This week, we've been feeling it a little - okay, a lot - as a family. Our usually happy boy is becoming harder and harder to keep happy. And it's so hard - for us and for him.
We're just back from a much needed holiday to our favourite place. Everything we did, we did it for our children. Just like everyone else. Soft play, farm parks, adventure parks and beaches. We tried so hard to make it an amazing time for them and yet Brody just wasn't happy. He had brief moments - of course, the ones I captured on camera and plastered on social media - but on the whole, he was frustrated. My other half got a black eye (kicked in the face whilst on the bed) and his glasses pulled off numerous times. A plate got smashed in a café. We struggled with Brody's lack of danger awareness and physically stopping him from doing things - like walking in to the sea - that would harm him. His sensory processing disorder was in full swing as he gagged at his favourite foods. And sadly his legs were tired and sore from being out and about a lot due to his hypotonia and hypermobility.
We tried to keep positive. To channel that SEND parent PMA. And for the most part, we did. But we came home admittedly a little deflated that it hadn't gone to plan and pretty exhausted from it all. That first night home, we went to bed and Brody broke a ten month seizure free spell (that we know of) and had two seizures. We were gutted.
When Brody's behaviour turns like this, it's hard not to feel like a rubbish parent. Because what we want foremost is for him to be happy. And that mummy guilt, it can really weigh you down. It's hard not to feel pissed off that things aren't straight forward and envious of friends who have the life you pictured when you first saw the positive sign after peeing on a stick. It's hard not to feel irritated by moany Facebook statuses about first world problems. It's hard not to worry about the future.
Let's be honest, sometimes it can be pretty hard to find the strength to turn around when you're on that path of sadness.
Then I think if we're feeling it - imagine how Brody feels. Frustrated that he can't communicate what he wants and how he feels with us because he is non-verbal. Tired from sore legs. Struggling with sensory issues. Annoyed at his little sister for taking up half of our time too, whilst at 17 months being able to do things easily that come so hard to him.
There's that mummy guilt again.
It's not always easy. Sometimes you can't gloss over life. But I have to remind myself of that cliché - so far you've survived 100% of your worst days and you're doing okay. We'll be okay - and if you're on that path, so will you. Promise.
This blog was written for and first published by Firefly Community.
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