I’ve said many a time and again I’d like to reiterate, it is was it is , Ava wouldn’t be Ava if she didn’t have CHARGE syndrome. I’d never have learnt to love her big blue eyes that can literally tell me all I need to know about what she’s feeling. I’d never have learnt… Continue reading The Lips That Can’t Kiss
Since my youngest was born (15 weeks ago) Ava has had 5 hospital admissions, 3 of which resulted in more then 1 nights stay at either our local or specialist hospital. We don’t know an awful lot about her autonomic system – but we do know it’s perhaps not working as it should and he… Continue reading A Constant Battle
I shared a post on here 4 weeks ago about PND. Now my baby is 12 weeks old I feel able to enlighten and open up old wounds a bit more, if only for my own sanity. The one thing that has really struck me about my whole experience as a mother, and a mother… Continue reading Chasing Shadows
It’s been 8 weeks since I had an elective c-section for my beautiful baby boy. The weeks have flown by in some respects but in others it really hasn’t, sometimes the days would feel so endless and so isolate that I’d check my clock and question – is that REALLY the time? It was usually… Continue reading It’s Not A Badge Of Failure…
The time came and went. 6 weeks has past and I’ve been busy adjusting to life with a disabled baby and a newborn. I know, crazy right? If I had a £1 for the amount of times I’ve been spotted out and strangers have felt the need to laugh and say “oh your glutton for… Continue reading New beginnings and no sleep …
When Ava was originally sent to GOSH, one of the doctors said to us “oh she will be here 3 weeks maximum” … Nothing could honestly have prepared us for 6 months. 6 whole months! She was gravely ill in intensive care, however, at the point of us deciding to take more pictures of Ava… Continue reading Holes In My Pocket
As if it wasnt bad enough your daughter was going through all she was I travelled up to London with my mum and stepdad to see Ava, the first time they had seen her outside of intensive care. That morning I had phoned to check up before I set off on the trains, a nurse… Continue reading Brush With Death
As I’ve mentioned before, we spent 6 months in hospital most of that was at GOSH. As you can imagine during that time we made it in and out of different wards and were well known amongst all the seniors there. It’s a very specialist hospital, a lot of children are there long term and… Continue reading You’re Daughter Is Going To Die
After my daughter had had her emergency surgery that Sunday morning, I’ll never forget her surgeon walking past me as he was about to go on giving me a salute and a nod, the day before he had said to me he hoped she could wait a couple more days – clearly she couldn’t so… Continue reading Pieces of the Puzzle
What’s that? Charge syndrome? I’ve never heard of it and I bet most people who read this will go what? Yes, it exists and it is horrible! Don’t get me wrong it’s taught me so many things but there are so many complications, life limiting and threatening conditions. We arrived at GOSH non the wiser,… Continue reading CHARGE Syndrome
