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. ✌🏻

Privacy

A few weeks ago like I mentioned in a previous post I was contacted by a children’s heart charity about my sons story. Last night it was published on their website so I shared it to my Facebook page, well both actually. It’s had done lovely comments on it and a fair few likes. To my surprise it also had a few shares. One friend I actually feel guilty but I asked her to remove the link. 

She volunteered for the charity I get support from so she has many of these people on her Facebook account. These people know nothing about my sons heart defect as I’ve remained quiet about it. I don’t want them knowing. As far as they are concerned they don’t know the reason I get support. I fear that once they know they will do the whole sympathy thing. The tilted head, the “oh bless him” blah blah. Neither of us need their sympathy. 

Is that wrong? Should I have said something by now? By not telling people it’s not attention seeking. I feared that ht would be seen as that. I don’t share posts wanting likes on Facebook or sympathy, it’s to make people aware. It’s to show people how tough it’s been. To show the people who moan about their kids constantly how easy they have had it. 


In a way I wish I had said something, keeping it quiet isn’t easy. Sometimes when one mother takes her kid to the Drs over every stupid little thing I wish I had said something. She needs a big fuck off reality check. Stupid little bitch. 

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 ❤️

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. 

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. 

No more babies

After having my first son I always said I wouldn’t have anymore children. My circumstances were different back then I had spilt up from my partner before our son was born. Even though I said no more children I always kept his cot just in case. Then in 2015 I decided I wanted another baby this time around I’m married I’m more secure and things were gonna be different. Me and my partner got back together when our son was 7 months old got engaged and got married. After all I’ve been through with my youngest as much as I love him I couldn’t do it again. It’s put me off having more children even though I’d maybe have had one more.

The final nail in the coffin in that decision is selling the cot I once held onto for 4 years before having another child. I feel sad because it’s almost official now. No more babies from me 😢

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.