Being a CHD mum 

I’m a heart mummy but I’m not superhuman 💙
Being a heart mummy can be perceived sometimes as being a bit of a super mummy. I am often told “you’re so brave”, “you’re so strong”, “I don’t know how you cope with it all” and whilst it is true that I try to be brave and I try to be strong, there have also been many times when I feel anything but brave or strong, and I’m not entirely sure how I cope with it all either.
I don’t have a magical strength that I was endowed with the day I first heard the words “there’s something wrong with the baby’s heart.”
If you’d seen me shortly after handing my child to a surgeon for heart surgery, you wouldn’t think I was especially brave either.
Being on intensive care with a child recovering from heart surgery is like being on a rollercoaster. There were moments when I didn’t want to ride it, but I had no choice but to carry on, holding on tight and hoping that we would get to the end in safely.
Being a heart mummy is exhausting, overwhelming and wonderful. The mixture of emotions sometimes feels so intense. Sometimes the emotions and thoughts whirl around in my head and it all feels too much. There are have been times when I have felt like I almost unable to speak for sheer exhaustion. Times when all I can do is focus on the next minute, and take the next tiny step forward.
The reminder that this moment will pass is not always comforting. I know the challenging times will not last forever and will one day be just a memory. But I am terrified of the thought that one day maybe all of this will be a memory and nothing more. And so I cling to the present and learn to live in the moment.
The truth is, I cope with the surgeries, the rollercoaster ride of intensive care and recovery, the exhaustion, the challenging moments and the day-to-day fear of the future because I have no choice. Without further heart surgery my child will not be able to survive into adulthood.
Sometimes I cry, sometimes I get angry and want to rebel against this hand that we have been dealt. I would give anything for my child’s heart to be perfectly formed. And then I take a deep breath and remember just how thankful I am to have my child, and how incredibly lucky we have been so far.
Sometimes I wonder where I will find the strength to take the next step – but somehow I always do.
Sometimes I am thankful for what this journey has taught me, for the strength that I have found and for the faith that has been an anchor throughout the storms. I have been amazed at how joy can sometimes be found even in the difficult moments. I have learned to appreciate the little things and be thankful for them. Living in the moment is hard at times and a blessing at others.
I know how lucky I am to have my child, how different things could have been.
I’m a heart mummy, but I’m just an ordinary mum too.
I get angry with my children, I shout at them and there are times when bedtime cannot come quickly enough. I crave moments of peace in amongst the chaos of family life and there are times when I want to tear my hair out. Being a heart mummy doesn’t make me a perfect parent by any stretch of the imagination.
And when I shout, when I overreact, or when I feel overwhelmed by the demands that parenthood brings, there is also that underlying prickle of guilt and shame. I berate myself for my lack of gratitude. I know how lucky I am and yet sometimes my actions do not show it. But parenthood is hard at times and I am only human.
At night I look at my sleeping children and am thankful for another day with them. I might not live up to my own ideal of parenthood, but my children at least know they are loved and that’s what really matters. And I go downstairs and take a deep breath, feeling thankful for a moment of peace and quiet.
Who knows what tomorrow will bring, but for now I am thankful for today. Another day with all the chaos and imperfections that family life brings. Another day of ordinary heart family life.
I’m a heart mummy, but I’m not superhuman.
I am not amazingly brave, or exceptionally strong; 
(Author Louise George )

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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. 

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. 

Our story mixed with a rant

I got an email yesterday with the first draft of Or’s story reading it was emotional again. Re reading what I’d told this stranger over the phone re living the memories. It was pretty hard in all honesty. I look at the boy now and apart from the scars there’s no evidence of what he went through. That little silvery white line that saved his life is all that’s there. 

Patronising people at groups telling me how well he’s doing they don’t have a fucking clue. Dopey little bitches that make up drama to make their lives more interesting to others. If they had seen first hand what he went through they wouldn’t be so fucking patronising. It’s been hard work physically and mentally exhausting going through it all but my little boy, my tough little cookie made it through. I don’t need silly little dramas o keep my life private not one of them have the first clue how hard it can be.  

Why is it parents (not all) feel the need to compete with other parents?! “My kid is 6 months old and crawling and pulling to stand” blah blah blah who gives a crap?! All children learn at different rates. All they need is parents willing to push them to the best of their ability and teach them it’s ok to make mistakes. I’m proud of my children. It’s a daily battle with them, they both have very different needs and I’m stretching myself to try and fill those needs. I just don’t feel like it’s good enough some days. I won’t ever feel the need to compete with other parents I don’t scoop down to their level. 
I’ve had my rant now I’m going to kiss my beautiful boys goodnight then I’m off to snuggle up to my youngest boy and go to sleep. 

Lovely blog award 

Hey me again I was recently nominated by for the lovely blog award – Thank you huntsclubhouse.wordpress.com it means a lot to me. 

Ok, to go over the next step…
The Rules:
Thank the lovely person who nominated your blog and follow them if you don’t already. Check out the nominated blogs.

Display the award and add this set of rules to your post so that your nominees will know what to do
Nominate other lovely blogs listing them in your post and notifying them via a link in one of their blog posts.

So my nominations are *drum roll please* 

beautybeyondbones.com

davidsnape.me

makeitultrapsychology.wordpress.com

anonymouslyautistic.net

sparkleanddreamsphotography.wordpress.com

ourownnormal.wordpress.com 

katiereablog.wordpress.com
List 7 interesting facts about me: 

I am a fully qualified hairdresser 

I love colouring 

I love having my nails done and doing my hair

I love to go out really dressed up so I’m not mumsy.

I have 10 tattoos and want more 

I have a ginger kitten 

I’ve had several jobs I’ve worked in pubs, nightclubs, retails shops, hairdressers a pizza place and an office for an IT company. 

alwaysoverthinkingthings.wordpress.com

The boys story

A few weeks ago I was contacted by a charity set up specifically to raise the importance of echos during standard newborn checks after every birth. They wanted to know if I was willing to share my sons story about his heart defect. Although I was a little nervous as I’ve kept his story relatively private (hence the anonymous blog) but if it helps another mum going through what I went through it’s worth it. 


The call came today while the star of the show was asleep. I told his story from start to finish and in honesty I got pretty emotional telling it.  It’s been a long time since I’ve had to tell it from the beginning and had to go into so much detail. 


I got through it and I’m proud of myself. I got his story out there but what’s really frustrating is when I read and share other people’s stories on Facebook no-one bothers to read them. Ignorance is bliss until it’s their child or grandchild (expect in my mothers case) with a heart defect. I really wish I could get people to read these stories and realise what mothers like me have had to live with. Mothers who have lost their babies due to the health professionals failing to diagnosis their babies. It’s heartbreaking for me reading the stories and I lived through similar.