I think my blog is a bit negative, I know it is, but, it’s somewhere I can come at a stupid time in the morning and just write how I feel. I can’t change the world, or my situation, it’s simply the cards I’ve been dealt and I just have to get on with it.… Continue reading One of those days…
As a sort of “ritual” I check out my ‘on this day..’ On Facebook. One thing that really struck a cord with me was that this time last year I didn’t put one single post up on my page. It’s blatantly obvious as to why, it was my daughters first Christmas and due to some… Continue reading Christmas
A letter to a former me If I could go back two years I wish I could give myself the pep talk I so desperately need right now. I would tell myself that it is all meant to be, that Your first born will be very sick but, it’s going to be okay. She will… Continue reading A Letter To The Former Me
You know I’ve been on a journey of discovery – how cliche is that? I’m only human and I’ve learnt that we really do all have a breaking point, mine has been over a year of tireless journeys and never ending worry for Ava’s health, top that with a new baby and I’m sure most… Continue reading Welcome To Reality
I obviously don’t mean prison,but then again it might as well be. Except if this were prison I have an indefinite sentence … Since my son was born I have lost count on how many hospital admissions Ava has had, it’s really been that many. I feel guilty Ava spends her life in a hospital… Continue reading Life Behind Bars
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
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
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
takechargewith2 