Reading 

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. ✌🏻

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. 

CHD 

https://themighty.com/2016/12/congenital-heart-disease-heart-parent-journey/
https://themighty.com/2016/12/congenital-heart-defect-people-asking-if-child-is-fixed/
https://themighty.com/2016/11/what-parents-of-children-with-congenital-heart-defects-should-know/
https://themighty.com/2016/11/why-we-should-raise-awareness-for-congenital-heart-defects/
Give the articles a read you might learn something from them about CHD and children with heart defects. 

Outcome 

Well I didn’t cancel my appointment I went, I explained the best I could how I’d been feeling and the outcome was just to be handed a prescription and sent on my way. I wish I’d have felt less anxious and more courage to say what I wanted instead of being too upset. I told him all the anxiety stemmed from my youngest son heart defect diagnosis. He didn’t care he just sent me on my way. I explained I was concerned about the side effects of taking tablets he didn’t care. Why is it so difficult to get help? Proper help? It’s no wonder so many people still take anti depressants years down the line it’s not because they don’t want to change it’s because they got sent away with pills and no help. So these people have no option but to go along with it. 

I’m disappointed I didn’t get the result I wanted. More disappointed that I couldn’t speak up and tell him I don’t want meds. I’ve been told it’s possibly ptsd. Having a normal healthy pregnancy and having a normal healthy baby seemingly for 2 days then bam ” your baby has a heart defect” life turned upside down. All that excitement turned to fear and anxiety. Not understanding fully what I was being told they should have made sure I understood and I fully caught grasp of the situation. 

I honestly think if it was picked up in pregnancy I would have known what to expect. I would have had time to prepare and tell people he would be born poorly. It’s all just been a massive whirlwind blur. I look at pictures of him as a newborn and tiny baby and I can’t honestly remember those days it’s all one big blur. It’s sad I can’t remember it. I need help to unlock my mind and properly come to terms with it. He will always have a heart defect repaired or not. He will always need to be under the care of a cardiologist even as an adult. It’s not something that ever goes away. People don’t realise this fact. Surgery doesn’t cure a heart defect it repairs it the defect is always there. 

F#%king Anxiety

One of the things I’d never normally describe myself as is a drama queen. But tonight I feel completely stupid and feel like I’ve been a drama queen. 

I took my little one to see a nurse on Saturday evening because I think he’s unwell. Classic signs of yet another ear infection. They agree that his ears are inflamed but they wouldn’t treat it there and then. Had I taken him to the gp surgery knowing his medical history they would have treated him with antibiotics straight away. Yesterday he was still off it not his usual chirpy self. This morning though I thought he had brightened up a bit. But he hasn’t. He fell asleep on me after lots of tears at playgroup he slept for around 45 mins. It’s not like him. Then at around 1:30pm he started getting grumpy again ready for another sleep. He usually has one half an hour sleep but he’s been extra sleepy and clingy abs grumpy. I got him in the bath early tonight and maybe it’s anxiety but I swore he looked blue around his mouth. Maybe I’m over thinking it maybe I’m paranoid trying to find an explanation for the sleepiness. I took some pics and sent them to my friend. That’s when I felt like a prize twat. I just needed someone’s opinion of someone to say he looks fine. I’m not normally this dramatic but he’s not well and I feel like because I’ve had depression people don’t believe me. I take him to see the nurse when he’s ill and she treated me when I was at my lowest so I feel like I’m being judged every time I take him. 95% of the time he’s been poorly in the last almost 18 months there’s only been 2 occasions where I was wrong. It’s like they think I’m making it up or purposely hurting him. I would never ever ever do that to my kids and I would never use my kids for attention. 

I’m sat here feeling down, feeling tired and worn out. I feel incredibly alone and like I’m an idiot for over thinking. I’d been doing so well there’s just so much going on. I knew it wouldn’t last so now I’m disappointed in myself and being too hard on myself. 

Final draft 

After the call last Tuesday from the charity I mentioned I received the final draft via email this morning. I know there’s hardly anyone that gets what a big thing it was for me to share my sons story but I’m proud of myself. It was hard and emotional telling it but I hope that it can provide some comfort to another family dealing with what I dealt with. 

Here’s the final draft obviously for my privacy I’ve removed names and any personal details inline with my blog. 

Or’s story K already had a son, O when she and her husband decided to try for another baby. They had no trouble getting pregnant and the nine months of pregnancy passed without incident. In April 2015, little Or arrived by emergency caesarean section and seemed perfectly healthy. However, the next day, during Or’s newborn tests, the medical team noticed a heart murmur. Although relatively common in newborn babies, Or’s doctor decided to investigate further they did an ECG and Or was sent for an echocardiogram later that day that revealed he had a congenital heart defect – Tetralogy of Fallot. K was in complete shock and couldn’t take anything the doctors were telling her in. Her little boy had been feeding well, his colour seemed fine – she couldn’t believe this was happening to her baby. Why Or? K blamed herself – thinking Something she had done during pregnancy caused Or’s condition. Tetralogy of  Fallot usually does not require immediate surgery, so Or was sent home from hospital and began to settle in with his new family. His first cardiology appointment was at 4 weeks old. It was during that appointment that she was told the full extent of Ors condition and that it required open heart surgery at around 6 months old. K was warned to keep an eye out for any signs of heart failure – colour change, lethargy and rapid breathing. They had regular check-ups – and one month before Or was due to have surgery, at 5 months old, The community children’s nurse noticed that Or’s oxygen levels were dropping. Immediately blue-lighted to their local hospital and then, after a further drop in oxygen levels, to the regional cardiac unit , Or was beginning to turn blue and was breathless. His heart was beginning to fail. Five days later, when he was strong enough, Or had open heart surgery to correct the defect. It lasted 5 hours. Finally K and Her husband were told that it had gone well, and that they could come and see their baby boy. The relief that K felt was so strong that it overrode any pain and fear she felt at seeing her little boy hooked up to machines. He was alive, and that was all that mattered to her. After a week in Intensive Care, Or was transferred up to the ward, and 8 days after the operation he was discharged from hospital. K felt elated. She couldn’t wait to get home, back to normal and back to her own bed. That was 1 year ago. Despite a few small issues since then, Or has gone from strength to strength. K says, “We were so lucky. If the newborn checks hadn’t been done so thoroughly, and if the ECG machine hadn’t been on site, our story may have been very different. Or is a cheeky, mischievous and very observant little boy, and he utterly adores his big brother, O. The work of T T is so important to find babies like Or. The earlier these defects are picked up, the better for the baby and their family. I am so grateful that Or was given the chance to fight his condition.”

Still feel emotional reading this even though I’ve read it over several times. I’ve written this story myself in my very first couple of posts but this is written by someone else as told by me.