This morning I cried. This morning I put my head in my hand, and let the tears fall.
I’m not grieving.
I haven’t been seriously hurt.
I don’t feel unloved.
Or any other obvious reasons to weap.
I cried because I’m tired.
No not just tired, it’s way beyond that.
My body is screaming at me.
I feel like my body is shutting down bit by bit.
Tiredness so severe it hurts.
I’m 10 years into this life, as a parent to a disabled child.
I’m 2 weeks into the summer holidays. And my body is failing me.
Imagine running for hours and hours every day of your life, even when you need to stop because your legs are weak, but you can’t.
You do it day after day, year after year.
Then a period of time comes (7 weeks long ) when you have to run 20 hours a day on your already weak leg’s , you push and push because you can’t afford to stop.
Being a parent to a disabled child is running from eyes open to eyes closed, and some in between.
We can’t just ” get a good night sleep and feel better in the morning ”
We can’t have a pj and movie day to rest.We can only push and push. ‘ come on body, we can do this ‘ I cry.
I saw this on Facebook just an insight to special needs mums lives.
I managed to keep myself together today after yesterday, I’ve been out with my little one to the open door group so it was a nice distraction from over thinking.
My mind is working overtime and I’m not really processing my thoughts on yesterday. It doesn’t help that I can’t really talk about it fully not on here, not in person so I’m stuck. I want to talk about it but other then writing it in my mood book I’m struggling to. I wanted to try and catch my support worker for a chat to fill her in on things that are going on and what happened with the meeting last week wit this new health visitor, shes arranged to come to my house tomorrow for a support review. I’m not sure if it’s a good thing or a bad thing it’s a bit out the blue. So now I’m overthinking that wondering why I’m having a review unless it’s because it’s been a while since the last one.
My youngest boy is still not well I feel like I’m being fobbed off with this “viral infection” I know my children better than anyone else. I spend all day everyday with him and I know in my heart something isn’t right. I’m torn between trusting my instinct and wondering if anxiety is playing a part in this. My husband has said that he’s noticed something isn’t right too. As much as I want it to just be viral I’m scared to death that it’s something else and I’m not seeing it. I’m terrified we will end up back in hospital again. I don’t know what I’m doing right anymore. I swear they think I’m crazy but they didn’t live through all those months of worry. I’m no drama queen but at the moment I feel like it.
I’ve got so much floating around my head I dint know what I’m doing. I forget everything, I have to write everything down or it’s gone. I’m getting things muddled up days, times etc. I find myself in my own little world and don’t always realise when I’m being spoken to. I go from not wanting to clean the house to bat shit crazy cleaning frenzies. I go from not hungry and skipping lunch to full on starvation mode. There’s no i between at the moment so even if I seem like I’ve got it together and my emotions are in check there’s so much more to it. I need to get this said I need people to know even If I look fine it’s just a pretence, it’s all for keeping up appearances.
I’ve grown up always believing I was never wanted. My mum didn’t know she was pregnant with me until she was around 5 months gone. Probably past the legal abortion limit. I’ve grown up thinking it was too late for her to “get rid of her mistake” I’ve never known who my biological father is. She’s never spoken about it other then once i remember her saying to me ” you know dad’s not your real dad” that’s it. Not that I would ever want to find out. I have a lot of respect for my dad. My mum met and married him within 5 months then a year later they had a child. The favourite child. Even though I have 2 boys the same age as her two boys my mum favours her and her kids.
It really pisses me off nothing I do, nothing I say is good enough and my boys aren’t good enough for her. I honestly believe that because my children in her eyes aren’t “perfect” they have individual needs that they are defective somehow to her. I have a child with autism and a child with a heart defect. Do you know what they are fucking perfect both of them. Maybe to her I’m not a fantastic parent like my favourite child perfect sister.
Do you know what it’s been bloody hard work this past 15 months. If any one of them lived my life for a day they might have a slight understanding of what I’ve been through. Not that they give a toss.
Before my youngest had his operation I had the comparisons “I went through it with your sister” yes my sister had more operations but it wasn’t on her heart at 5 months old and it wasn’t major life changing surgery and she wasn’t in intensive care for any amount of time. I made him a diary of his first year of life including his time in hospital. When I showed my friends they shed tears and hot choked up. I showed my support workers and they said it was emotional reading it. My mother showed no emotion what so ever. Her response was “oh that’s good wish I had done one for your sister”
I don’t know why I’m not good enough I don’t know why my children aren’t good enough. But over my dead body will I let them grow up surrounded by those negative wasteful people.
I have friends who pick me up when I’m down. They support me when I need it, say all the right things to encourage me and share my enthusiasm and share my joy in my children’s milestones. I can’t say that my family don’t upset me they do they always will. But one day I will tell my children the whole truth and keep them away from all of them our lives will be better without them in it.