Reading my last blog post my little sister V offered to have my boys for a few hours on Sunday so me and the husband could go out without the kids.
When I agreed to it it seemed like a great idea and very thoughtful of V to offer out the blue. Even though I slept relatively well I woke up still tired. Almost like I’d not slept. The kids woke up stupidly early and to be honest I just wanted to stay in bed. I didn’t want to get dressed, I didn’t want to go out. I don’t know what was going on. 6 days a week I get up I get the kids clothes sorted, I do the washing, fold clean clothes, feed the kids and get them where they need to be on time without fail. On a Sunday generally I stay at home in my pjs and I do nothing.
I got upset and wound up and made myself crazy about getting ready to go out. I just didn’t want to go but I don’t know why. What’s so wrong about going to lunch with my husband? The time we were to drop the boys off would have been the time my youngest needed a sleep. Knowing he wouldn’t settle for anyone I decided to let him sleep at home in bed. I cried as I cuddled him. Thinking I’ll never hear the end of it if I decide to not go. My husband will hold this over me for life. I try to tell him I’m not feeling great he thinks everything can be solved with sex, a hug ir watching a film. None of which i am remotely interested in. I want understanding, I want him to stop pestering me and pressuring me to spend time with him. Keeping my shit together all day is hard work. Nursery, school runs, everything else is tiring. By the time the kids are in bed I’m knackered. I just want to be left alone to lay in bed, watch tv, blog, write or draw. By 9-9:30 I’m ready for sleep.
I know it sounds selfish but I make sure my kids come first in every desicion I make every day. So when they are in bed I get to be selfish I get to think about my needs and what I want. So that’s what I’m going to do. I don’t get much time to myself so I evhiy by evenings to myself.
This week I meet my sons health visitor for a chat and a catch up while he’s at nursery. This causes anxiety because I’m used to seeing her at home while he’s around. I also meet my peer link worker for the second time also causing anxiety. I hate it I really hate it.
So I made it through the summer holidays. Do I feel proud of myself? No. No because I shouldn’t be thinking of “surviving” it should be easier to get through summer. It was hard work and I felt so low some days.
My emotions have been on a high today I had my exit interview with HS. As soon as it started and she told what my first assessment came out very low I broke down in tears. I tried to fight them off and got no where. The more I spoke the more I got emotional remembering how bad things were when I was referred to them. I know I’ve come along way but I can’t stop the remembering. It’s my youngest boys heart Anniversary in like 10 days and the emotions of that are getting to me. I feel totally alone. Low and like I’m drowning.
I was told I’m good at looking after myself on the outside but I neglect myself on the inside. This is why I wasn’t ready for the support to stop. This person who had known me 2 years just gets me. She understands me and knows what to say when I need someone to talk to. I’m going to miss having that person to talk to. The person who builds me up when I’m feeling low, the person who reminds me how far I’ve come and shares that with the other support worker I had. I’ve come on a journey with HS and although things aren’t exactly where I’d want them to be I stilll have them to thank for how far I have come.
I’ve been a wreck all day I’ve had no one other then a 2 year old to talk to. I’ve cried pretty much all afternoon and I’m crying now. There’s only so many times I can lie and say I’m fine when inside I’m screaming talk to me, someone be here for me before I give up.
So I said that the charity that was the main support for me had lost funding so they couldn’t keep going with the sessions i was going to. A friend of mine V went to a counselling session for herself today (same one that I am suppose to be starting in a couple of weeks.) she was told that she can’t be seen anymore because she’s also lost her funding. It comes as yet another blow because I’m changing my son’s nursery day specially to fit around this counselling. I was told it would be every week on a Thursday but turns out it would have been every 6 weeks. But it looks like it’s not gong to go ahead anyway. I was relying on that to make me feel better and get better from this relapse. I was relying on to open up old wounds and get rid of old demons still haunting me, but now I can’t. What the hell will I do now? How am I ever going to feel better? And stop letting my past haunt me? How will I ever be able to talk about it.. I can’t go back to S2c because that will feel like a massive failure on my part. I tried other counselling and I couldn’t do it. I’ve fucked up my only chances to get real help.
I now have this genetics appointment through for 29th September at the hospital we always go to so I don’t have to travel too far. But to be honest it’s not the travelling I’m worried about. It’s the blood tests, the questions, the results, the whole fucking process. It’s not like it’s just one appointment. It might be 3 or 4 or whatever. What if there a genetic problem? I mean come on I’ve got one child with autism and one child with a heart defect it’s gotta be somehow my fault. I created them it’s my doing. My body let my kids down. I won’t have any other children now, i can’t put myself that through any of this again. There’s a possibility my youngest as well as having the heart defect could also be autistic. I can’t deal with it. I just try to pretend everything’s ok. My head is a shed.
Having an autistic child is extremely challenging it will make you question on a daily basis what you do wrong to start a meltdown. It’s tiring, it’s frustrating, it’s draining and upsetting when I don’t know how to help him sometimes. I wanna protect him from the world who judge him because he has a sensory disability. He hates hand dryers and we have to use the disabled toilets so he doesn’t hear the hand dryers. We get stared at for using them because people presume having a disability means a physical disability. He gets overwhelmed when its crowded, he gets overwhelmed at birthday parties. It’s a daily struggle so I can’t cope with two of them being autistic. It’s hard enough with one let alone both.
The youngest with his heart defect is seeing him before his operation struggling to finish his bottles because he got breathless quickly. He constantly fed. He still gained weight but he was always feeding. He wasn’t allowed to cry for long periods of time because he turned blue. Then taking him,down to the theatre and kissing him goodbye for what you think maybe the last time. Waiting for news for the longest 5 hours of my life. Seeing him in picu hooked up to machines breathing for him giving his heart a rest. It’s something you never get over. The struggle didn’t end after surgery it’s not like surgery is a cure it’s just fixes his heart his heart will never be normal he will always have tetralogy of fallot. This is why I will never have more children this is burned into me for life. I can’t take the risk of having another child with a heart defect.
Some days I don’t really have much to feel in the way of anxiety and depression in this relapse. It’s weird I can go from one night feeling absolutely shockingly shit. I’d be crying, writing over thinking and feeling like I could crawl under a rock and not come out. Then the next day it’s almost as if I didn’t feel that shit, that upset, that bad. Is that normal? Is that how this works or is this what I’ve had to get used to doing and now it just comes naturally that I have to pick myself up and get over it?
Night times are the worse. I feel stupid because I want to be alone. I don’t wanna socialise at night once my kids are in bed but then everything comes pouring out and the tears start to fall and I feel lonely as hell. My husband doesn’t get it he thinks everything can be fixed with a hug. I don’t need outsider support because I have him. I tell him I didn’t sleep well funnily enough neither did he. Even though we don’t share a bed. I co sleep with my 2 year old. I’m happy with my arrangement. I feel like shit guess what he does too. I can’t win whatever I do he has it much worse.
That outsider support is what I’m missing I need that someone not connected to my family or my personal life to talk to. I need that outsider perspective. Someone who asks me if I’m ok because they are genuinely concerned and wanting to make sure I am. I went to the open door sessions where kids can go and play and have a snack because it was judgement free (most of the time) now more so because there’s more understanding that my 2 year old has tetralogy of fallot and that despite being repaired it’s a life long heart defect. I don’t know what I’m going to do there’s still so much going on I’ve had a mini break from it all a taste of life with hardly any proffesionals involved and now all of a sudden once September gets here it’s all going to start back up again. He’s making great process with speech being the exception so I don’t know why I’m so worried.
Well today the proverbial shit well and truly hit the fan. A week or so ago I’d waited 15 mins for a bus 3 pushchairs got on before me one of which had a 3/4 year old able to walk in a stroller. It would have been nice given that I’d waited a long time and my 2 year old who is unable to walk was asleep to be let on my one of them folding a pushchair down. They didn’t so I had to phone for a taxi. I was already pissed off but then the driver that turned up put the taxi meter on before he got out of the car. Before I got in or even loaded my pushchair in. My son had just woken up he was still sleepy in my arms. I’d been charged by a so called family member to put my buggy in the boot.
I told the guy who owns the company I was not impressed I was not happy. Well today I go to my sisters and ask for a taxi into town for 10:45, it turns up at 10:50 and it’s the same driver (the “family” member) that previously over charged me the week before. I needed the cab so I was gonna get in and say nothing. I left the house to go to the taxi and he tried to drive away I try opening the door. He gets out and says no I don’t want you in because of last week. I said fine I’ll walk. I rang up the firm again and says right I need another taxi and fast because he refused to take me.
Then I ranted on Facebook like we all do. That’s when the shit hit the fan. My grandad having a go, my “auntie” (the drivers wife) having a go. All telling me I’m lying etc I was to get my facts straight. I had my say and I wasn’t backing down. The conversation ended with my grandad telling me not to go to his house again. Me saying fine by me. I was angry how dare they treat me like that. It’s no loss of mine and I have no intention of crying any tears over it. They are not people I want my children growing up around.
As much as I love Christmas I’m glad it’s all over. Normality is just beginning to come back. My husband went back to work today and it was just me and the boys.
Even though I slept terribly last night I thought today went well. Took my msejf and the oldest boy for our hair cut and it’s something that he doesn’t particularly enjoy. He doesn’t like sitting still and doesn’t like the mini clippers that use around the hairline. He did well actually and treated him to a cake after.
I handled today on my own really well I thought I would struggle with tiredness and anxiety but I didn’t. My friend L came up to see us and the oldest played really well her older 2 children. Quite pleasantly surprised.
I have one more day at home with both boys then my eldest goes back to school on Thursday. My friend V is coming up to get her hair done and after that I’m going to wash my hair and top up the bright pink colour I did last week so it stays nice and bright. I am looking forward to Thursday but also anxious about going back to open door sessions at HS. I know I won’t have someone to talk things through with which is going to be hard and I know my anxiety will build. I just can’t start to confide in someone else because she’s not discreet and that’s no good to me. I’m a private person I don’t want people knowing my issues in the group.
So all that to consider I don’t know what I’m going to do it’s going to be tough. I actually inboxed a distant friend who is a very religious person and has a strong Christian faith. I have so many unanswered questions that I’ve considered going to church to see if I can find some answers. She’s meeting me next week and she’s going to introduce me to the minister. I’ve always been sceptical of religion but I’m intrigued by it now. I’m more a spiritual believer then religious believer.
Anyway that’s my rambling over for tonight.