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. ✌🏻

World Heart Day

Some Bonds Cannot Be Understood ❤️
Some bonds cannot be understood…

Unless you have walked them before… 

A path that I would not have chosen… 

A future I just can’t ignore.
We’ve all watched our children intently… 

Memorizing each line… 

And let them leave our loving arms… 

And prayed things would be fine. 
We’ve paced the halls awaiting news… 

And wondered just what lie in store… 

We’ve felt our own heart’s racing as… 

We walked through an PICU door.
We’ve seen the child we love so much… 

Struggling to overcome… 

The lines…the cords….the monitors… 

No thoughts…no words…would come… 
We’ve prayed for an improvement… 

We’ve laid it in God’s hands.. 

We’ve cried…we’ve hoped…we’ve worried… 

We’ve wondered of God’s plans. 
We’ve learned just how a heart works… 

Each valve and artery… 

We’ve asked alot of questions… 

We’ve faced each surgery. 
And somewhere down this well worn path… 

We’ve met more families… 

Who know exactly what it means… 

To live with this disease. 
We’ve smiled at every triumph… 

And shared in every sigh… 

We’ve prayed for a child that struggles… 

And each family that must say goodbye. 
Some battles are fought with bullets… 

And weapons made for war… 

While these are fought in silence… 

Behind a hospital door.
We’ve wondered what lies in our future… 

We’ve been thankful for just one more day… 

We’ve stopped and watched with tear-filled eyes… 

Our children…as they play. 
We’ve struggled with ounces and weight gain…

Why won’t my child just eat? 

But heart parents …we’re a tough group… 

We’ve learned how to face a defeat. 
We’ve faced those moments…others do… 

When life has got us stressed… 

But it doesn’t take long to remember… 

That we are richly blessed. 
We’ve taken on a whole new role… 

One we wouldn’t exchange if we could… 

We know that life is difficult… 

We hold onto all that is good. 
God chose each of us carefully… 

I do believe he smiled… 

Some bonds begin with strangers… 

And each very special child ❤️

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. 

Local news


During a mad moment on Friday night I emailed my local newspaper and shared my story about the closure of Glenfield hospital. To my surprise they actually published it. I am extremely nervous it’s the first time it’s public knowledge about my youngest boy. I’ve kept things relatively private keeping things between friends and family. I’ve never gone public until now. I’ve shared it on my Facebook wall but I’m I totally regretting it thinking people will see it as attention seeking. Thinking people I didn’t want to find out will know once it gets shared along the Facebook route. I don’t want pity for him and I don’t want to have to talk about it to anyone else. It’s in the past and if Glenfield weren’t under threat the article wouldn’t have been published. 


I’m not an attention seeker I kept things to myself for 5 months telling no-one outside of family and very close friends about his heart defect. I didn’t go posting everything on Facebook I create a new account and only added close friends and family to it to keep them informed of progress etc. The first time I posted on my normal account was the night before the surgery. Even then I didn’t go into details. 


It’s had a couple of positive responses from friends but it’s the ones that’s do say anything silently judging me for sending the story in. Fuck them they didn’t live through it I did. They didn’t see their 5 month old baby on a ventilator helping him breathe or being under sedation for days. They didn’t have their 5 month olds heart repaired. I did. So I shared my sons story and I hope people are inspired by it. They can save their pity for someone else my baby boy don’t need it. 

In other news my youngest boy now 5 months can bum shuffle round in a circle and he stated to try and pull himself up on to legs in the bath. Nothing stops this boys I cousins be any more proud of him. Today with the help of the sofa and his dad he stood up for a minute. Such an amazing moment for me as his mummy. My family don’t really get the meaning of this and how special it is to us. To them it’s not important to me it’s made my day. He’s coming on so far he’s amazing bless him few more months and the boy will be off and there’ll be no holding him back then. ❤️

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.

❤️

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.