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.
Reading back through some of my blog posts at the end of last year I realise how much of a dark place I was in. Reading the things that went through my mind on a daily basis. We’re almost 8 months into this year and already things have dramatically improved for me.
By the end of April I got my wish of being depression and anxiety free after I got through counselling, I got my eldest son’s autism diagnosis. I re connected with my mum and younger sister. I think once my thought pattern changed, I realised I was never going to change them. If I was never going to change them why bother trying? I made more effort and in turn they did too. They accepted my children are different and made more effort with them too. I see them on a weekly basis now, there’s more communication between us.
My life has improved no end since April. Hearing the news I had waited 2 years for finally freed me from the weight of feeling so shit. I love how my life is and it’s not perfect it’s still hard work but I don’t hate my life. I don’t think about clothes 3 days in advance. I don’t hold back on what I say anymore afraid of hurting people’s feelings or them not liking me anymore.
Things are heading in the right direction. I’m starting to understand my children more. My 6 year old with his needs and wants and how he has to do things his way, I’m teaching my youngest son makaton, he’s copying things we do when we teach him. He started walking 3 weeks ago and he’s got such a funny character to him.
Life is what you make it, you can cry, kick and scream that you haven’t got perfectly healthy “normal” children or you can grab life by the bollox and say I’m doing a bloody good job at raising my children each with their own individual extra needs. Things can only go forward from here. No more looking back. ✌🏻
That feeling where no matter what you do it’s never good enough… I’m never going to be good enough. Everything I do is wrong in the eyes of my “family” I will never be good enough and my children will never be good enough.
What did I ever do to deserve being treated so differently from my siblings? I would bend over backwards to help them but I never get any help back from them. Maybe if they were more helpful and didn’t ignore me I wouldn’t need so much support from elsewhere. I wouldn’t need to use a childminder to look after my youngest son while I’m on a course. They would help me out.
I’ve grown up and spent my entire life feeling unwanted. I truly believe given half the chance I would have been aborted. Do they even care this is how they make me feel? The answer is no.
They don’t even know me, they don’t know what this past 18 months has been like for me. They wouldn’t care even if they did. Do they know how exhausting it is having a child with autism? Or having a child who has only just learnt how to crawl? Having an 18 month old that can’t walk yet is also tiring. Having depression and anxiety is exhausting and I don’t get a break. I’m on the go all the time.
My eldest did so well in school yesterday he wanted to tell his nanny so we FaceTimed her. She didn’t hang up properly instead paused us and went on to complain about us going to visit her tomorrow. At first I was pissed off then I got upset. Why? Why do I bother with them? Why do I continuously make the effort with them? She doesn’t want me or my kids. I’m still sat here now in tears because of my mum. I sent her a message saying if you’d rather us not go round then just say so and I’ll take the kids to town or the park. I was going to say nothing but why should I bite my tongue and get treated like crap? Why will I never be good enough? Maybe I should have been given up for adoption then I wouldn’t have had to spend my entire life living in the shadow of other people.
My eldest started back at school last Thursday after 6 weeks off I expected the worst. To my surprise he actually had a really good few days. He got the most dojo points over thursday and Friday so he got to bring the class teddy bear (Bobby bear) home for the weekend. It was going brilliantly he came out of school yesterday with a big smile saying “no tears today mummy” I was so proud.
Today on the other hand hadn’t gone aswell. The tears I expected on the first day back happened today. He went into school upset and crying. I don’t know what triggered him but something upset him. He came out if school early for his eye test at the hospital, came out happy enough and did well on his eye test.
Got home and he tried a new food so I gave him a certificate for doing so well and he even offered to look after his brother for me while i did some housework. Again it was going great unti he dropped his Lego and it all kicked off again from there. He was angry with me for breaking his Lego. Although it wasn’t my fault he kicked off in spectacular style. No end of crying and hitting himself and shouting.
Just as I thought I’d cracked it and maybe I was getting somewhere with him this curve ball gets thrown at me. As if all this wasn’t enough to deal with my husband comes home from work rolls his eyes at me cause it’s kicked off. Like I’m suppose to stop it happening. He spent less then 2 hours with the kids and he’d had enough of them screaming and crying. Welcome to the fucking club mate I’ve been at all fucking day long. No lunch break no tea break no nothing. Just two mardy screaming kids to contend with.
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.
I’ve said many times before lack of sleep is my biggest downfall with depression. My youngest at 14 months so still needs to have 2 sleeps a day from anywhere between half an hour at a time to an hour. Yesterday he only slept half an hour all day my wishful thinking was that he would sleep better at bedtime my old I was wrong. He was so unsettled I barely slept. Eventually after many hours of tossing and turning he fell asleep after I gave I. And cuddled him back to sleep. I fell asleep around 2:30 am woken up at 5:15 then fell asleep until 6:34am I was knackered. I was severely sleep deprived and I was irritable.
I came out my room to find my 5 year old having this massive meltdown over a toy. I blew up at him like some kind of monster. I felt instantly guilty but I was so tired I just didn’t have the energy to fight him and listen to a meltdown at 6:40am. Eventfully it calmed down but put me in crap mood first thing. I just wanted to break down and cry but I kept It together. It’s such hard work sometimes and I try not to tell school too much in fear of them thinking bad of me. They have been so fantastic I just don’t like bothering them they are so busy. This. Owning as a nice surprise to see the whole school do a flash mob to hairspray. Cheered me up and I told his teacher about his meltdown this morning. God only knows what he told them but he’s come home with a Thomas the tank sticker chart and once he has 8 stickers he gets a reward from school.
Once school was over I had to bribe him to go to Argos as I needed to take my up youngest boys pushchair back. It went well easier then I thought. I thought he would play hell up as he hates change. We got on the way back home and the youngest was sick all down me in the taxi, I got home and tried to clean him and myself up. I got my eldest some tea left it on the oven too long and burnt it. Couldn’t apologise enough to him thinking he’s going to kick off one because his tea is ruined and to my surprise he just said “it’s ok mummy, everyone makes mistakes sometimes”. Bless him maybe I’m too hard on myself I was having a crappy morning and maybe he was too but I didn’t think of him like that I just saw it as yet another meltdown over something daft.