Summer is over

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. 

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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.

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. 

Not sorry

Going back a few posts I mentioned awhile ago I’d made a new friend. She went to the same open door sessions I went to. Many times she came in went into the office and came out in tears. I felt for her she looked like she was having it rough. I reached out to her. Mentally I was in an ok place I needed something to keep my mind busy and reaching out to this person did that. I invited her out for lunch with my and the ladies. I paid she said she had no money I wanted to do something to help. 

We got quite friendly i wouldn’t ever say close but friendly. She’s a nice girl but she has had a lot of issues and trauma in the past. She’s not the only one. There was something about her that kept saying to me she needed someone to talk to. I quickly became that person. I didn’t mind at first but the more drama that happened around her the more difficult it became. Last weekend she had yet more drama police she social services turning up at her door (not for the first time)

It was then I confided in a very close friend that it was becoming too much. Too over bearing. She called 10 times a day, messaged me in between. I have 2 children I don’t have time for this. So wether I was in the wrong or not I backed off. Maybe I should have spoken to her. I didn’t ignore her but I distanced myself. It was the start of the 6 weeks holidays and my children had to come first. I had to distance myself for the sake of my children and my mental health. For that I’m not going to apologise. 

However it seemed that me saying I’d been busy didn’t go down too well and she majorly kicked off. I took screen shots of all the conversations so nothing I said could be twisted. Well she decided that everything I said she would twist for attention. I realise now she’s probably done this many times before. She has a mental illness, I presume her mental illness combined with her past makes her thrive off the attention people give her. “I said her daughter deserves to be in care” “I threatened to phone social services up so her child would be taken away” all of it being bullshit. 

It hurt that she was slagging me off calling me fake. Didn’t even have the balls to admit it was aimed at me. She denied it. I didn’t have to but I chose to help her. I chose to introduce her to my children and her to be in my life. I asked her to watch what she said around my autistic son he copied her and his behaviour changed as soon as she came to my house. I’m telling him off for kicking her and hitting her when he sees her kicking me, I don’t care that she was “having a laugh” he copies her he gets a bollocking how is that fair? She’s not an example to be set to my son. I don’t want my children surrounded by people who bring drama into my life. I need to be around people who understand my children and their needs. 

I have nothing more to do with her now. At first I felt like it was me. I’ve had a fair few people fall out with me recently. No longer will I be the silent one and hold back on what I think. I will say what I think needs to be said. I need to stay strong and be pleased that I’m putting my children first. Not other people and their selfishness and drama. I’m sad I lost a friend but she was sucking life out of me. I feel for her daughter and what kind of life she will have, I fear for the the unborn child being put on a child protection plan. I wish her well in her future I just can’t be part of it. 

The shit hit the fan. 

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. 

World Heart Day

Some Bonds Cannot Be Understood ❤️
Some bonds cannot be understood…

Unless you have walked them before… 

A path that I would not have chosen… 

A future I just can’t ignore.
We’ve all watched our children intently… 

Memorizing each line… 

And let them leave our loving arms… 

And prayed things would be fine. 
We’ve paced the halls awaiting news… 

And wondered just what lie in store… 

We’ve felt our own heart’s racing as… 

We walked through an PICU door.
We’ve seen the child we love so much… 

Struggling to overcome… 

The lines…the cords….the monitors… 

No thoughts…no words…would come… 
We’ve prayed for an improvement… 

We’ve laid it in God’s hands.. 

We’ve cried…we’ve hoped…we’ve worried… 

We’ve wondered of God’s plans. 
We’ve learned just how a heart works… 

Each valve and artery… 

We’ve asked alot of questions… 

We’ve faced each surgery. 
And somewhere down this well worn path… 

We’ve met more families… 

Who know exactly what it means… 

To live with this disease. 
We’ve smiled at every triumph… 

And shared in every sigh… 

We’ve prayed for a child that struggles… 

And each family that must say goodbye. 
Some battles are fought with bullets… 

And weapons made for war… 

While these are fought in silence… 

Behind a hospital door.
We’ve wondered what lies in our future… 

We’ve been thankful for just one more day… 

We’ve stopped and watched with tear-filled eyes… 

Our children…as they play. 
We’ve struggled with ounces and weight gain…

Why won’t my child just eat? 

But heart parents …we’re a tough group… 

We’ve learned how to face a defeat. 
We’ve faced those moments…others do… 

When life has got us stressed… 

But it doesn’t take long to remember… 

That we are richly blessed. 
We’ve taken on a whole new role… 

One we wouldn’t exchange if we could… 

We know that life is difficult… 

We hold onto all that is good. 
God chose each of us carefully… 

I do believe he smiled… 

Some bonds begin with strangers… 

And each very special child ❤️