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. ✌🏻

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.

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 ❤️

Dealing with me

Coming home was amazing I couldn’t wait to get back to normal (whatever that would be now) I missed my home comforts and being in my own bed I missed my oldest boy and loved not being disturbed by nurses or doctors.

We were to go back to the hospital in a weeks time for a post ward check but I had 7 days of no hospitals to look forward to yet.

We went for the post ward check up the operation was a success. It did what it needed to do to repair his heart.  He just had a little extra fluid around his heart so yet again go back in a week for another ecg and echo. The following week it was cleared. It was such a relief because I panicked that it would involve more surgery or some kind of other procedure to drain the fluid.

Treat him like a normal child they said something I struggled to get my head around. He’s just had major heart surgery he’s not a normal child he was also on 4 lots of medication 4 times a day. Normal children don’t take medication. Normal children don’t need to recover from heart surgery. How is he normal? He will never be normal.

I struggled so much with the diagnosis and the months after and in honesty I struggle now. A couple of months after the operation my anxiety and mood didn’t improve. Then came the words “postnatal depression” I refused to believe it and accept it. I was fine I just had a hard time adjusting to what normal is now . I got a lot of support leading up to the operation and get a lot of support now it’s something I’m not ashamed to admit. I eventually accepted  that I have post natal depression and although I have refused mediation on several occasions I’m working on getting better. 

I tried talking therapies but it wasn’t for me after 3 sessions I was coming out of there in a worse state then what i was going in. Instead now I get other support. I have a lot of people around me and I’ll be forever grateful to them. They will probably never know how much they have done for me and my family.

I write everything down and it gets read. It’s easier for me that way I can’t talk openly and truthfully about how I’m feeling I’ve never been great at it. Nobody tells you how to cope with it all. Nobody tells you that it’s hard work. Nobody tells you that you get tearful for sometimes no reason . Or something so small can put you in a bad place. I had a lot of anxiety over leaving the baby I wouldn’t go anywhere without him not after leaving him in theatre. Something I had to work hard on and get used to leaving him and it was hard. The first time I was due to leave him I cried about half an hour before and got so worked up and I felt embarrassed because I felt weak.

Depression is such a taboo subject and I haven’t told my family that I suffer with it and they have no clue what’s going on. I haven’t told many people at all just a couple of close friends. People look at me and they see I have my hair done, it’s clean, styled and straightened, I dress decently in clean clothes, put make up on and  I have my nails done every couple of weeks. That’s the person I allow people to see not the mess of a person underneath. I can’t leave the house without make up on. I can’t leave the house without doing something with my hair even when I can’t be bothered. I can’t just throw on some clothes that day and hope it looks ok. I have to plan what I want to wear at least one day before if not I can’t cope.

I’d always been the one that was there for other people when they needed someone to talk to. I always thought I was quite a strong person but I feel broken I don’t feel like the person I used to be. I never had to rely on anyone before. It’s so hard that with this depression I’m relying on people when I have a crap day. I ring people to talk, I go to talk to people who support me and they are all brilliant. They probably have no idea how grateful I am to have their help and support It’s just I never used to have to do that. Everyone says to me how strong I am, how well I coped with all that’s happened it’s all lies I don’t cope, I haven’t coped. I’m a fraud because I don’t post it all over Facebook they don’t see what’s really going on. They don’t see my tears or the pain behind my eyes. I keep them closed off afraid of being vulnerable. I sometimes still hide how I’m truly feeling saying I’m ok when I’m not or that I’m fine when I’m not. I’m afraid if I tell people all the time I’m not ok they will think I’m not coping or get other people involved. Something I don’t want happening.