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. ✌🏻

Taking things to heart 

I tried very hard today not to let someone’s comments about my parenting bother me but it upset me and the person saying this things only knows me in a baby group setting and by the information I share with her which isn’t a lot. These people hardly know me but still choose to make comments possibly without thinking how it can affect the person they say it too.


I’ve overcome much worse in my life but I’ve had enough going on without people making out I’m a bad parent. I try my hardest every single day to be the best mum I possibly can to my children and some days it’s easier then others. I’m not perfect and I don’t claim to be perfect but I believe I’m a good mum. I put my children first in every decision I make every day. With everything I’ve had to deal with I’ll admit I’ve done things wrong. And probably made some things harder for myself but with the life I’ve been given I believed at that time it was the right thing to do.

I was reduced to tears today because I just feel that this person is making me feel like nothing I do is good enough nothing I do is right. I can’t go somewhere to be made to feel like this. I have worked my arse off to feel better and I don’t want to get dragged back down again. I’ve got some great friendships and people have been so incredibly understanding and even the people I’ve only known for a few months have been great. 

So I do things differently, so I’ve made mistakes. I am only human. People are so quick to judge me but they haven’t lived my life and they aren’t the ones trying to deal with things like I am.

I needed to get a good sleep at night and I needed to know my little boy was safe and to me that meant he slept in my bed and still does now. I still have anxiety issues I need to work on but it’s one more thing to overcome when he goes into his own room. Advice I can take on board criticism I can’t.

My worry about speaking out about this upsetting me is people thinking I’m being over sensitive because I suffer from depression. Feeling stupid because someone upset me over such stupid little things. But all  those stupid little things add up and it plays in my mind and it gets to me. They don’t hear the comments I get about a one year old not crawling, they don’t see the judgemental looks I get when I say my one year old can’t crawl or the looks I get when my 5 year old struggles in a setting and he can’t express his emotions and gets frustrated. I wanted to speak someone so I did and she has known me a year now and has helped me through everything she’s not a friend but a professional person. She said she had no concerns at all over what I’m doing if she did she’s bold enough to say it to me.

I do feel stupid for ringing her but I needed to talk to someone about how I felt. I’m lucky that if I continue to feel the way I do that she will help me and get it resolved.

 I don’t want to stop going places I get support from and a place where I did made 2 new friendships and helped an existing friendship become stronger but if she makes me feel like crap anymore I will just stop going.

What’s it’s like to have a CHD child 

I saw this on patches heart group on Facebook and wanted to share it. ❤️

Whats it like to have a child with a CHD ……
Its cocktails of medications …

Its wondering “WHY”

Its monitors and oxygen

Its feeding tubes

Its calories and weight gain

Its the drama of eating

Its the first time I held her

Its knowing that I need help

Its making a hospital a home for a while

Its seeing my reward in every smile

Its checking sats

Its caths, xrays, and bloods

Its thinking is she blue

Its cringing inside what shes been through

Its dozens of calls to her doc

Its winter and hand sanitizer

Its knowing this journey has made me wiser and humble

Its watching her sleep

Its surgery days

Its handing her over

Its knowing her heart must be repaired

Its waiting for news

Its praying

Its hoping

Its the bond we share

Its that long faded scar

Touching it and knowing we are blessed

Its their lives that remind us we still need to fight

Its finding the strength to have hope for tomorrow

And we’ll never be the same

Its changed me and my family

Some people have distanced themselves from us

Some people stop asking because everyday is a new challenge

This is what we face each day

This is a CHD child

This is MY CHD child and if I go on about the simple things she does its because every morning when she wakes up it is one hell of an achievement

And I’m so proud of my heart warrior.

❤️

The end of all that was bad. 

Yesterday marked the end of the year that has been the hardest year of my life. I never want to go through what we went through oth our youngest son ever again. There have been some good moments it hasn’t all been bad but it’s not been great. It’s been during this time I’ve learnt who said they were there for me and proved it. My friends and professional support have been amazing and incredibly supportive when my family weren’t. I’ve never needed anyone before like I’ve needed people this last year and I’m forever grateful to those who I cried down the phone to, late night tweeted my worries and fears to or chatted to to make me forget things for a while. 

The check up with the cardiologist went brilliantly I feared the worst for no reason as it turns out. My little superhero as I call him still has a residual VSD but in time it may just close itself up. 

Going to the hospital I felt extremely nervous, i felt sick and despite reassurance from friends thatmy little one would be fine I couldnt believe it until he had all his checks and his echo. The best possible news we could have been given is that he is doing brilliantly. My little fighter is just fine. He will obviously need follow up care for the rest of his life but I can deal with 1 day every year to go and get check ups. There are 364 other days where I can just enjoy my children and be a family that doesn’t have to worry about oxygen sats, echo’s and ecg’s.

It’s marked the end of the year from hell now it’s a fresh start our new beginning starting all the birthday celebrations today.


My little boy turned one he had no idea what was going on but we made it special for him. We needed it to be as proper celebration like he has been born again.


We helped him open all his presents and cards, then we took a cake to a baby play group where all his friends are and celebrated with them. We then came home and had a visit from my parents and some friends. As per usual family weren’t the ones making the day special it was my friends. They came up with their children to play and have cake. They made so much effort I’ll be forever grateful to them. These people are my “family” all of them. They got me through the tough times and have been there through the good times too. Along with the all the support I’ve had I’ll be forever grateful to these people because without it I wouldn’t be where I am now. I finally feel free of everything that’s weighted me down. I feel like a new person. The person i wanted to be for this special day. It’s a new beginning for my family and I can wait to start our new adventures and leave the past behind us. Yesterday I cried with relief with being given good news, today I have cried happy emotional tears. It’s my baby’s first ever birthday and I’ve created some wonderful new memories to replace the old.


 

Heart Parent Bingo


I’ve heard several of these and some more recent then others. The most common being “is he crawling or walking yet” really bloody irritates me when people ask why my youngest isn’t crawling or walking at a year old. Well I’m sure if their babies went through what mine did they might not be walking or crawling yet either. I hear other people at groups making their lives sound more dramatic then they actually are. That also annoys me because going back when my baby was first born or going through his op I’d have killed for a drama free life. They sit there silently judging me because I was very over protective of him after the op and he’s not crawling at his age. They don’t know what he’s been through and they don’t know what I’ve had to live through for the past year. I hate the comparisons even between family members what their baby can do well my baby survived open heart surgery at 5 months old so that pees all over what everyone else’s baby can do. My boy will walk or crawl when he is string enough and ready to do it until then I just appreciate all the other firsts he accomplishes.

Support

I mentioned that I get a lot of support from various people for my mental health now but the support I’m lacking is from the one person that should be supporting me the most. My husband. As I’ve said before I’m not the greatest at talking but I have tried and failed several times to talk to my husband. Every time I talk to him about anything he always makes it about him and somehow comes off as if he’s got it worse. It’s no competition but here’s what I’ve he to deal with that he hasn’t.  We have an older son so while i was in hospital for 3 days after having the baby he was with our other son. When the doctors found the heart murmur i was alone, when they did the ecg I was alone and when they did the echo on his heart again I was alone. Then the diagnosis came and once again I was alone.

A couple of weeks after the baby was born he went to work full time and there was me on my own 5 days a week with a newborn and a nursery age child. I dealt with everything alone while he was at work. Nurses coming in to check sats and our health visitor coming to weigh the baby once a week. I did it all alone. I went to the hospital appointments to the cardiologist alone too. I’m not saying he didn’t feel things too but he didn’t have to deal with what I death with on a daily basis.

When things turned into an emergency situation and the baby was rushed into hospital he stayed at home and looked after the older boy while i once again dealt with doctors and nurses and had more sleepless nights. I slept in a chair next to his bed that’s when I actually slept. I slept with my head leant over on to his bed for the first few nights and was in hospital for just over 2 weeks. They came to the specialist hospital but still I was alone most of the time. When we came home once again he returned to work and I was the one dealing with hospitals and getting the other boy to school. Booking hospital transport arranging someone to be there for the older boy. Missing him and not spending time with him as much as I wanted with going back n forth to hospital.

Now when I’ve tried to talk to him several times and failed I gave up trying. I write a mood diary every night for one person to read to see how I’m doing and what I can improve on. It’s my therapy. It’s private I let one person read it and only that one person. So I caught my husband reading my book I confronted him a day he came up with some pretty pathetic excuses and turned it round to say how bad he was feeling. I told him under no uncertain terms it was private and asked for respect of that privacy. He’s once again breached my privacy and read my book cover to cover. So right now I’m nothing short of pissed off and upset. There’s no point confronting him again it clearly had no affect last time. I’m sad that he felt the need to read my personal things. I know some will say there should be no secrets in marriage but it’s not like i haven’t tried to tell him everything he just doesn’t want to listen. He’s got it much worse then me why would he listen?

CHD Awareness

5th of Feb is heart day… Something a year ago I knew nothing about. I knew next to nothing about heart defects the only thing I knew was some babies were born with a hole in their heart and that’s it. I didn’t know that 1 in every 100 babies will be born with a heart defect of some kind and I didn’t know that my baby would be that 1 in 100.

A year later I know more about heart defects that I ever wanted to know. Tetralogy of fallot something that until almost 10 months ago I’d never heard of. Basically it means 4 things wrong with the heart – 2 holes ASD (atrial septal defect) a hole that should close at birth a VSD (ventricular septal defect) a big hole between the two pumping chambers of the heart mixing blue and red blood. Right ventricular hypertrophy the right side of the hearts muscle thickened due to it having to work harder and an overriding aorta the main artery on the heart in the wrong place because of the VSD. Worst part of this particular defect is its only correctable by open heart surgery. So that meant a major operation on my 5 month old baby. Before the surgery it meant a nurse checking oxygen sats weekly, weekly weigh in’s with a Heath visitor and monthly hospital visits for ecg’s and echos. All the things you would expect to see on an episode of Holby city not real life.

I joined groups on Facebook to get more Information and read other people’s stories, I googled the diagnosis every night and hoped every night that the hospital had got it wrong. Sadly not. I lived through months of worry and sleepless nights, week after week and month after month of constant check ups. But nothing could have prepared me for the actual operation. You never expect to be told your baby is sick but if there’s one thing I’ve learnt its that my son is much stronger then I ever thought possible. Much stronger then I ever was. He had major heart surgery almost 5 months ago and bounced back to being a healthy baby how he should have been born as. I’m so proud to be a heart mum to my little superhero ❤️