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. 

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. 

Heart mum problems

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. 

Jealous

It’s been a day of mixed emotions. Plans I made with a friend got cancelled last minute because one of her children wasn’t well and I handled it pretty well. Normally anxiety would have been raised and I’d have been wondering what I could do instead. So I went to town and decided I’d colour my hair instead. 

I was feeling ok but I saw something on Facebook and I kinda got upset my it and I got jealous. I hate it it’s such an ugly emotion but here I am trying my hardest to get the physio done for my little one and I’m seeing how well all these other children are doing. They are walking, talking, standing and getting praised for it quite rightly so of course. It’s just a massive downer and slap in the face with a reminder that I’ve got to have physio involved for my son. He’s got a development delay because of his heart issues when he was smaller. He tires easily and I get paranoid about him being exposed to the cold. A constant reminder that my baby still has that small hole in his heart. I know it’s depression making all this harder to handle it just sick of it all. I get no help from family and I feel like I’m a constant burden when I say these things out loud and when I ask for help. I’m sick of people who don’t know what I’ve gone through with him telling me how well he’s doing. They don’t know shit and it feels patronising and frustrating. I would love to see my little one walk or stand unaided or stand against something unaided but it’s not that easy. It’s never going to be that easy it’s taking time and it’s slow progress and I feel like I’m getting no where with it. I feel defeated by it I want him to do well and I want him to have his independence it’s hard work having a 19 month old who can’t walk, or talk much. It’s tiring and it’s lonely and it’s hard. 

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. 

So proud 

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 ❤️