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.
Thursday was a pretty bad day. I was very emotional and upset. I didn’t have anyone to talk to but my friend L and I were talking on Facebook messenger and asked if I wanted to meet her Friday morning while my youngest was at toddler group. I would have normally said no but I really wanted company and I agreed.
We ended up spending the whole day together she took me to get my little one from toddler group and the she said she would kidnap us. It was actually really nice and I enjoyed her company. Sat there chatting and watching the kids play. It started the ok couple of days I’d had.
Yesterday after my oldest son lost some Lego under the sofa I decided to change around my entire living room. It looks so much nicer and more spacious now. I was knackered after all that went to bed early and the little one had me up early so I was still tired this morning. Normally on a Sunday I don’t do a great deal but I made cupcakes with my oldest, cleaned out the guinea pig, swept the carpet (because the oldest being autistic he hates the sound of the hoover) then cleaned all the windows, washed my bright pink hair then cleaned up the mess I made in the bathroom, dried and straightened my hair then finally sat down to watch a bit of a film before the youngest boy got tired. So basically I’ve hardly had any time to relax today. Because it’s been so crazy and the youngest boy not going to sleep when he should have it got to my emotions. I got upset over stupid little things, my husband ignored the fact I was stressing at the kids and continued to spend half an hour cooking his own tea while I didn’t even get to eat the crappy pasta snack mug thing I made for mine. So today was crap. Hoping tomorrow will be better.
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.
So having a child with a heart defect really isn’t easy. I guess I’m relatively lucky that my little one doesn’t really have that many problems with his heart now but he still has a residual vsd.
When he gets poorly whether is a common cold or any other illness I immediately think it’s something more serious. It’s inbuilt in me to think the worst. My little one now 19 months picks up ilnesses and infections quickly. He’s picked up a viral infection as soon as he started coughing I took him to the doctors to be checked in case it was a chest infection. I swear they look at me like I’m crazy but once they see his scar they realise I’m not.
It’s reassuring that I’ve asked other heart mums if they overly worry and thank his they said they do. All the time. I’m glad it’s not just me worrying over minor illnesses. What other parents don’t realise is when your child has been through so much at such a young age they are even more precious. When doctors have stopped your baby’s heart and it’s been worked by machines you wonder if it’s ever going to re start itself. So while a viral infection is not nice for healthy children it’s harder for children with heart issues. They are at bigger risk from infection, their hearts have to work harder, their bodies have to work harder and it’s knocks the wind out of them. I see my snotty little baby struggling with this viral infection and I go right back to feeling helpless.
Mums with healthy babies should be so grateful they haven’t had to deal with what us heart mums have, don’t ever be dramatic about “poorly” children when they haven’t had open heart surgery where infections can be life threatening or a lot more serious.
Don’t compare your child to mine because it’s not a competition to see who has it worse. I’m my own worst enemy because I compare development stages and I shouldn’t so don’t do it for me. Be there to support me when I say my baby isn’t feeling well don’t just presume it’s nothing it’s never nothing with heart babies.
A few weeks ago like I mentioned in a previous post I was contacted by a children’s heart charity about my sons story. Last night it was published on their website so I shared it to my Facebook page, well both actually. It’s had done lovely comments on it and a fair few likes. To my surprise it also had a few shares. One friend I actually feel guilty but I asked her to remove the link.
She volunteered for the charity I get support from so she has many of these people on her Facebook account. These people know nothing about my sons heart defect as I’ve remained quiet about it. I don’t want them knowing. As far as they are concerned they don’t know the reason I get support. I fear that once they know they will do the whole sympathy thing. The tilted head, the “oh bless him” blah blah. Neither of us need their sympathy.
Is that wrong? Should I have said something by now? By not telling people it’s not attention seeking. I feared that ht would be seen as that. I don’t share posts wanting likes on Facebook or sympathy, it’s to make people aware. It’s to show people how tough it’s been. To show the people who moan about their kids constantly how easy they have had it.
In a way I wish I had said something, keeping it quiet isn’t easy. Sometimes when one mother takes her kid to the Drs over every stupid little thing I wish I had said something. She needs a big fuck off reality check. Stupid little bitch.