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. ✌🏻
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.
So yesterday was my youngest boys 2nd Birthday. I gotta admit the night before I was a little bit emotional. He’s growing up he’s 2 now. Sad reality that I no longer have a baby. His birthday was lovely I really enjoyed it, we had a really nice birthday party for him and the kids loved it.
Today I’ve kept myself busy because I don’t want to think about tomorrow and what it meant for us 2 years ago. I’m trying so hard to stay positive and think of all the amazing things we’ve done since then. My counselling sessions are helping me see things in a different light. I’ve been told that I’m punishing myself and making myself re live it instead of moving on because I blame myself for his heart defect. My little boy has done brilliantly well since we were told about his heart defect. This time last year he could only sit up he couldn’t sit himself up, he could roll over, he couldn’t put his feet on the floor, stand or crawl. This year there’s a massive difference he can do all those things confidently now. He’s even moving around furniture to get to places. He’s not walking or talking yet but this time next he will be.
I’ve shielded his diagnosis for so long because I didn’t want him treated any differently to other children. I didn’t want sympathy for him and I didn’t want attention on me or him. I’m becoming more open about it now sharing more about him. Not because I’m stuck in the past because I’m trying to think and look to the future.
2 years ago was an extremely difficult day for me. Being told about a heart defect in your baby that’s only 2 days old. It’s a shock to the system. It wasn’t ever something I could prepare myself to hear. He’s come so far and I’m so proud of him and I’m trying to overcome this emotional side of it. I need to say the words out loud without crying or feeling tearful. I need to believe that I did cause this, I was not to blame and I need to stop punishing myself thinking I let my baby down. I need to stop being jealous of other children’s milestones and be grateful for the ones he’s hitting. I need to stop being jealous of people with healthy babies. I need to stop getting angry at people for making big dramas out of Childrens general ilnesses. They didn’t live through what I did. They don’t understand.
One thing to help me find my future was the fact that the cardiology hospital appointment went well. His heart function is good, the residual vsd still there but causing no problems and we don’t need to go back for 13 months. Onwards and upwards. (Hopefully)
I’m quite honest on my blog about me having depression and anxiety. This blog helps me get the stuff I need to get said out of my head which is one of the Bain reasons I started blogging. There’s a certain stigma attached to depression that everyone gets tarred with the same brush. Well I say it’s bullshit.
So many people think people depression don’t wash or don’t take care of themselves well that’s wrong. I have a bath or shower if not every day at least every other day. My hair is always clean and well presented. I do my make up every day and I dress decently everyday. I wash my clothes and change them every day.
People with depression spend days in bed, while maybe some people do I don’t. I get up and out of bed every morning, I soft my kids clothes out then sort myself out. Getting dressed in the outfit I planned a day or two before. I do my hair then put my face on.
That every depressed person wants to commit suicide or self harms. Again yes many people with depression do self harm and have attempted suicide. But not every person with depression has thought about it or wants to do it. I went for counselling last year and I was asked series of questions about my mental health. One of them was have you ever thought about or harmed yourself ? I replied no instantly I was asked why. Why haven’t I self harmed or thought about it? I’m depressed so I must have done. Then I was asked wether or not I’d tried to or thought about killing myself. I replied no. Truthfully I have never thought about ending my life. Again I was asked why. What’s stopping me from ending my life? I said I’ve never even thought about it I don’t want to end my life. Why? I was asked again in disbelief. Because I have 2 children that need me and I don’t want to end my life. There are people out there who genuinely feel like there’s no other way out of their illness I’m not one of them. But the people who have tried and luckily failed don’t get the help they need.
I am depressed and I have anxiety and there’s a real possibility that I also have 2 forms of ptsd. From 2 totally different in related evevts in my life. I am insecure, I am in no way a confident person. I wear make up every day to put on a pretence to the outside world that I’m fine so they don’t see me for who I am. I am broken. I have a mental illness. I hate how I look so I’m constantly changing something about me to throw people off the scent. I keep my mental illness private I don’t tell the world my business. Not many people know the real me. If you do you count yourself lucky cause I don’t show many people who I really am.
I’m trying to think of the best bits of 2016 so I try my hardest so start the new year in a positive frame of mind.
I look back and my mind goes straight to the awful moments of the year. Firstly I expected that I wouldn’t still be fighting off depression and anxiety. Things became worse for me when I opened up a can of worms confiding in someone about something that happened 15 years ago. I thought once I said it and got it out there I’d feel like a weight had been lifted. Temporarily it did, I felt free of it like the secret I’d been keeping locked away had freed me from it. But when march came and I’d found out someone had moved back into my town it went seriously downhill and caused more anxiety then I already had. I had to let other people in on this secret. It’s been pretty hard letting people in on this secret and talking about it and getting support to deal with it.
The only plus side is the support I have had has been amazing. My friend V has been at the end of every message or video call when I’ve been in tears. We really properly became close again this year. Closer then ever before and she’s classed as my little sister. This girl is a warrior princess or something. Despite her own issues she is there when anyone needs her. Everyone needs a friend like her in their lives.
This year my youngest boy celebrated his first birthday and his heart Anniversary. My eldest turned 5 and settled into his new class really well and has achieved so many things in school and home.
I usually make ridiculous New Years resolutions that I never keep. All I want for next year is my children to continue to progress in their own unique ways and hope that this time next year I’m in a much better place with my mental health. I want to free from my demons in 2017.
I’ve been thinking about the support I get and how grateful I am to have it. Maybe if my “family” were more helpful or more supportive maybe I wouldn’t rely on these people so much.
If I had a half decent support network from my mum and sisters instead if being ignored and pushed out I wouldn’t need to talk to a support worker so much. Not that I’m not grateful she’s there because I’ll br forever grateful to her. She’s saved my life and she’s saved my family. She’s my inspiration. I’d love to in a couple of years time use my experience as needing support to support someone else.
I sit with tears falling down my face wondering why my family ignore me and cast me aside. Wondering why I’m not good enough for them. Why my boys get ignored? Innocent children also get cast aside in favour of my sister. What did they ever do wrong? I’m only good enough when my mum wants her hair colouring or my dad wants Christmas cards writing. None of them have a clue what I’ve gone through in the past, what I’ve been through with my youngest or the daily struggles I face with depression ptsd and anxiety. What did I ever do to deserve being treated the way I get treated by them? Why can’t I have a loving family? Someone to talk to on tough days? Someone to confide in? My mum to understand what I’ve been through, someone to tell me everything will be ok. I don’t have that. I never will.
My sisters are my two closest friends D and V. D being my big sister and V my little sister. These girls are my family. They love me for who I am flaws and all, they love my boys for exactly who they are. They support me, listen to me when I need a sounding board and they are honest with me. V gets me I can tell her anything and this means to world to me. I can ask her anything and she’ll tell me the truth even if it’s not what I want to hear. She gets me because she herself has mental health issues so we can bounce off each other and support each other. Without the support and the few close friends I have I’ve no idea where I’d be. I just know it would be a very dark place.