Another blow

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.

Advertisements

Feelings

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.

Autism poem

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. 

Update..

Well I don’t know how I’ve done it but we are more then half way through the holidays and I’ve survived on my own for 4 weeks. Now my husband has some time off he can take over a little and I can relax a little bit. I have a review on Tuesday with my support worker and I have a girly day planned with V. Looking forward to it as my hubby is having the boys while I go to lunch. 


My counselling session on Tuesday was emotional and draining but talking about difficult  things it’s expected to make me feel like that. I got through it and I was able to feel a bit better Wednesday with a busy day with the kids. I’ve been referred for other counselling but it’s not in my home town. It’s a bit further away and I’d have to travel by train to get there and  I’ve  looked into child minders for my boys. To be honest it’s always in the back of mind, how will I afford the childcare? Who will I find to look after the boys? How will I tell my husband that I need to find someone to look after them and explain why I’m going out of town to see someone. He might think I’m bloody having an affair. I can’t talk to him he’s not the most understanding he turns thing back round to being about him. 


I guess my biggest worries about the new counselling is starting all over again with someone different, travelling alone, going to the session alone, coming out alone and travelling home alone. I’ve done all the previous sessions with support I don’t know how I’ll do it alone. Something I’m going to have to find out I guess. 

 
I don’t know what people see that I don’t, I tell people I’m struggling, I tell people I’m not coping and they tell me I’m doing fine and I’m doing great. What can they see that I can’t? I suriving the last 4 weeks but barely and relying on other people for help and support. That to me isn’t doing great. Maybe I’m too hard on myself? 

I decided after my counselling on tuesday that I would create a mood book. Not just writing things down but drawings, quotes, song lyrics things, person I want to be and the person I am now. It’s something I can create that can be positive and show what obstacles I’ve got to overcome. Every sketch has a meaning and although they aren’t brilliant I think they look ok. Just a few of the drawings I’ve done for my book. 

Worrying

I have a meeting at school for my 5 year old on Friday with his school teacher, SENCO, my support worker and key worker from the county council. I’m nervous and anxious it’s the first meeting with everyone in the same room as each other. I’ve spoken about these people to each of the people going but they are all going to be there on Friday. I’ve asked my son about things that worry him at home and school. But my main concern is looking completely stupid in front of all these people and breaking down in tears when I go through my concerns. 

I’m ashamed of these people knowing I have depression and anxiety. I only have depression and anxiety because I’ve been through hell since April last year. I need these people to know that it’s not just because I had a baby and now I’m depressed. I had a heart baby and he had surgery to fix his tiny little heart. I don’t want them judging me thinking I’m a terrible mother. I also don’t want them to see me cry if I can’t handle it. I need them not to see me vulnerable I can’t cope with it. I’m so afraid of them thinking badly of me. I need them to see its been hard work but I deal with it the best to my ability. I put on this facade like I’m coping brilliantly like I did this time last year before the referral to the support charity I’m with now. 

I’m sat with my sleeping baby next to me crying over the anxiety of this meeting. Wondering who I can talk to to ease my mind. Do I call a friend or just deal with it alone? Do I call my support worker tomorrow to go through it or do I cope alone? What do I do? I don’t know but I’m hoping someone does.