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. ✌🏻

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. 

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. 

CHD and what it means 


http://www.scribblesandcrumbs.com/2015/01/12/10-things-you-need-to-know-about-congenital-heart-disease/
I read this on Facebook and it brought tears to my eyes. It’s a re order that CHD children and babies are so incredibly special. They all share that little faded scar down their chest known as a zipper scar. 


Sometimes it’s hard to remember that little scar inadvertently saved my little boys life. It’s a scary thought. It’s getting incredibly close to his heart anniversary. And I start thinking back to the scariest and most worrying time of my life. I’m grateful he’s still here more then anyone will ever know, I look at that scar and remind myself of what he went through and realise I’m so incredibly lucky. Many CHD mothers haven’t been so lucky they lost their little angels to something that couldn’t be defeated. I am reminded every day of to struggle he’s had over his life and he’s only nearly 16 months. I feel so envious and jealous when I see younger babies crawling, rolling over and walking. All the things he could have been doing by now if it weren’t for his heart defect and his open heart surgery. Every little milestone not important to anyone else is huge to me. I know some people don’t get it and they don’t share my excitement. My baby boy stood unaided for like 5 seconds today something that made me so incredibly happy and proud but who do I tell? Why share it? It’s not a big deal to them like it is to me. 


It’s a lonely world of the possibility of a cough being a chest infection rather then just a cough, infections being picked and treated asap, its infections every few weeks or months, it’s trips to a cardiologist once a year. Physio every few weeks and people asking if he’s crawling yet. This is easy compared to what it was this time last year. It was weekly sats checks, monthly  hospital visits and weekly weigh in’s on top of everything else. Some parents don’t know how lucky they are have to have healthy children they take it for granted and ignore their kids in favour of mobile phones and websites and sitting and chatting rather then interacting with their child. Sometimes I wanna scream it to the top of my lungs everything my little boy has been through but neither of us need pity. I don’t want people to pity him and ask questions which is why I keep it quiet. 


That article published last Sunday I’m thinking and hoping no-one I know from baby groups saw it. Because once they know it’s out there and it’s staying on there. They ask too many questions as it is and they don’t know anything. I like my life being private. Other shout about their problems I choose to blog. 

Worrying

I have a meeting at school for my 5 year old on Friday with his school teacher, SENCO, my support worker and key worker from the county council. I’m nervous and anxious it’s the first meeting with everyone in the same room as each other. I’ve spoken about these people to each of the people going but they are all going to be there on Friday. I’ve asked my son about things that worry him at home and school. But my main concern is looking completely stupid in front of all these people and breaking down in tears when I go through my concerns. 

I’m ashamed of these people knowing I have depression and anxiety. I only have depression and anxiety because I’ve been through hell since April last year. I need these people to know that it’s not just because I had a baby and now I’m depressed. I had a heart baby and he had surgery to fix his tiny little heart. I don’t want them judging me thinking I’m a terrible mother. I also don’t want them to see me cry if I can’t handle it. I need them not to see me vulnerable I can’t cope with it. I’m so afraid of them thinking badly of me. I need them to see its been hard work but I deal with it the best to my ability. I put on this facade like I’m coping brilliantly like I did this time last year before the referral to the support charity I’m with now. 

I’m sat with my sleeping baby next to me crying over the anxiety of this meeting. Wondering who I can talk to to ease my mind. Do I call a friend or just deal with it alone? Do I call my support worker tomorrow to go through it or do I cope alone? What do I do? I don’t know but I’m hoping someone does.