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.
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. ✌🏻
This week has been pretty awful. Since last Saturday my anxiety was driving me to think I was crazy. Convincing myself that there was something seriously wrong with my little one. I was convinced and panicking that he was blue around the mouth and he wasn’t. I took him to the doctors to get checked over and left feeling worse because it was a simple viral infection that was just draining him of energy. I swear I feel like I’ve been going mad.
My 5 year old has been unhappy all week going to school upset and coming home upset and unhappy. I don’t know what going on with him he barely ate properly until Thursday. I don’t know why he’s unsettled and unhappy I don’t know if it’s something I’m doing wrong or if he’s just having a bad week. With him having a very limited diet I’ve been trying to get him to eat new food. I got dome sonics from a friend and she suggested we cook together so yesterday we had some one on one time and made sweet potato chips and he loved them. I felt very proud of him. There was no hesitation and he was so excited to make them. Bless him.
That was our finished result.
End of the week hasn’t turned out so bad it’s ended kinda well. My friend V came up to mine this afternoon with her hubby and kids. Few weeks ago she wanted her hair coloured blue well god knows what the hairdresser did to it but it was knackered it was green and washed out after like one or two washes. So I’ve sorted it for her this afternoon. It was a blondey greeny colour and now it’s cosmic blue and pink. It’s looking awesome.
Have to share the results
The feeling I get when someone likes their hair and they feel great after is brillian. I feel so normal and I get lost in the hairdressing and I feel confident. Like the days before depression. If I could feel that way on a permanent basis I would.
I’m actually feeling pretty good about things at the moment. I feel upbeat and positive. I feet under so much pressure with everything. There was therapy, the nursery placement, triple p course and physio for the youngest boy.
Once I decided not to continue with the therapy I felt no pressure, childcare is sorted for the days I do my course aswell so no more worrying about nursery. I’m not saying that not going ahead with therapy is my most brilliant plan but it’s taken the pressure off me, it’s taken the anxiety away and it’s helping no end with how I’m feeling. I feel good I hate saying that becsuse normally something comes along to knock me down again. Family tried and failed on Thursday.
Thursday being my youngest boys heart surgery anniversary. We wrote messages on balloons and let them go. My family apart from my auntie weren’t invited. Not one of them asked about the day Or what I was going to do. They showed no interest. So me and my family of wonderful friends, my auntie and my in laws did it together. I refused to let them get the better of me. I refused to back down and I’m glad they weren’t invited. I’m glad they were pissed off about it because they felt left out like I do all the time. They got a taste of what I’ve felt like all my life. My wonderful friend K sent me a lovely message saying she was sending love to the boys and she was thinking of us. That meant so much to me i nearly cried. I have lovely supportive wonderful friends and I’m so grateful to have them in my life.
I’m on track to getting my life back into order despite what happened on the past. It wasn’t easy to talk about but it was easier then the intense therapy. So instead it’s onwards and upwards with my life. I wanna say that this is all over with and I can go back to the person I was before the depression. I’m hoping that my the time it’s a year since I was told post natal depression I will have got over it. Or it be behind me never to return.
Tonight after getting my youngest boy out of the bath dried and dressed well went into my eldest boys room to read a bedtime story as normal. I put the youngest boy on the floor and he can now get into the crawling position on his own. Something obviously caught his eye and he actually crawled. I’m so happy I could burst. This means so so much to me given that his heart day is on Thursday. It’s given me that boost I so desperately needed. It shows me that my hard work doing his physio is actually pulling off. I’m so happy and so proud I could cry!!i just wanted to share that with everyone because it just means so much to me ❤️