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Showing posts from July, 2016


I am sitting on the sofa with C Beebies blasting out and I look to my right, I feel a little hand grab  mine. Elijah looks up at me and says, ‘Mummy’.
This is one of those things that happens about a hundred times a day, but now and again I really take stock of them. I sweep his fringe out of his eyes and give him a little hug.
There was a time that I may not have ever been able to do this. To be able to raise my (nearly) two-year-old as a normal, happy and healthy little boy. He may not have even be here at all.
I am only able to do this because of Great Ormond Street Hospital.
After Elijah’s diagnosis of Tetralogy of Fallot at birth, after his admission to NICU we had always known he needed open heart surgery to repair his heart. To put it simply, to save his life. It was scheduled to be around the 6 month of age mark that he would have this surgery, from the latest consultant appointment and surgery meeting it was now looking like 9 months.
I couldn’t wait any longer so we contacted the …

My parent manual is lost in the post!

I think it is quite clear that as a first time mum, I have no bloody idea what I am doing. There is an intense pressure if the choices I am making for my son are the right ones. If they will affect him in the long run for the worse or benefit him like they were intended. No matter how many books, and glamorous looking parenting magazines you read, you really will not be equipped for when a screaming bundle of poop and hunger that keeps you up for 4 days straight. It leads me to ask if we all know what we know now, why are we not better advised as first time parents? Or is that the fun? That you have no freaking clue on what you are doing? My ante natal classes only seemed to advise me that breastfeeding was best, how to bath a baby and what happens when your mucus plug falls out. They told us what to put in our hospital bags but didn’t actually tell me what to do when I was in labour itself. I didn’t get taught any of those breathing exercises you see everyone on TV doing. Maybe I shou…

Super Elijah

I just wanted to make you all aware of a truly amazing charity, called Tiny Superheroes.
They make superhero capes for children going through a tough illness, condition, operation or disability. They truly make the children feel like the superhero's they really are.

I am honoured to say Elijah has become part of the superhero squad and will be wearing his cape with pride soon! I am also very thankful to the lovely Robyn who allowed me to write a piece about what it is truly like being a little superhero's mum and how I cannot live up to this.

While you are there why not donate or nominate a tiny superhero you know?


Tumbling Down the Congenital Heart Defect Rabbit Hole

The sole reason I started an Instagram account was to connect with other NICU/heart and CHD families. It finally felt as though I could be honest, really honest with how I felt no matter how dark it was. I felt understood, supported and comforted by those going through the same thing, reading their stories. From there my blog was born, and from that so was the NICU Mum #medicalfiles. For those who haven't already please see my other amazing ladies stories by clicking to view Carly's NICU story, Rachel's story and Lisa and Oscar's autism journey.I found the lovely Marcelle via the world of social media and began to follow her and her son's story. So many of her posts, her words, her pics instantly drew me back to waiting for Elijah's surgery and how low I really felt. This fellow heart mama and her wonderful heart warrior son have been through their own CHD story and this is that story in her own words. Your son needs open heart surgery. Hearing the cardiologist …

Pabarilife and NICU Mum - My Hero - Part two

As promised here is the second part of the Pabarilife and NICU Mum- My hero collab. For those who haven't please check out Priya's beautiful and moving post about her father by clicking here. The second part is my account of loosing my hero when I was 13.

The Church was packed, family and friends had gathered, some I had not seen for years. My nan was weeping. This was it.  It was time, I began to walk down the aisle, looking ahead slightly I didn’t think I could cope with the nerves. Reaching the end, I looked up and moved to where I should be standing, the vicar took the stand and began to speak. My Granddad's coffin was laid down and the service began. As this was not him walking me down the aisle like he should be, this was me aged 13 attending the funeral of the only constant father figure I had in my life. It felt like I was no longer whole, like I had lost my hero. Even so young, I was a complete Granddad's girl One of my earliest memories was sitting in my Nan’s …