The Sun Will Come Up ‘OH MY GOD, WHAT THE….’ Husband is doing bath/bed for Mojo’s baby sister and his distress is sincere and alarming. A familiar adrenaline rush drives me rapidly up the stairs to find him kneeling over baby running his finger over a huge purple and black bruise on her abdomen. It looked awful; internal bleeding? I looked … Read More
Handling. Handling change, manual handling and handling reality all of which have been at the forefront of my mind for the past couple of weeks. At a recent hospital appointment when Mojo’s weight was taken we learnt that it had, at long last, reached the dizzy heights of the bottom of the spectrum. This means her little biro … Read More
What just happened? I was braced for a fight, I had logged all the communications, I’d read up on legalities and getting what you want from an EHCP (Education Health Care Plan). I was trudging the anecdotal evidence on blogs and websites. Then the phone rang. ‘Just a quick call to let you know that your … Read More
It’s one of the things that is said most often to me. By family, by friends, by people we meet out and about and get talking to… ‘I don’t know how you do it’ ‘I don’t know how you cope’ Within the community of parents of children with complex needs the answer to the question … Read More
My husband and I have very strict rules about speaking too soon. You know the type of thing ‘didn’t they go to sleep well tonight’ ‘she’s not been sick at all today’ ‘we’ve not been to A&E for ages’ and so on. String all three together and you can pretty much guarantee yourself a wide awake, vomiting, … Read More
as·pi·ra·tion ˌaspəˈrāSH(ə)n/ noun noun: aspiration; plural noun: aspirations 1. a hope or ambition of achieving something. the object of one’s hope or ambition; a goal. 2. Medicine The action or process of drawing breath. The taking of foreign matter into the lungs with the respiratory current. Aspiration. I’ve been obsessed. Mojo’s ongoing battles with daily … Read More
Even the most cynical of people, the ‘I don’t do Hallmark Holidays’ types, have to concede that Mother’s Day is worth celebrating. Mother and child; the most fundamental of relationships. I say this as someone who recently gave birth and one who has been lucky enough to be the recipient of the most amazing mothering … Read More
Mojo will never run around a playground. She approaches toys very differently to most three year olds negotiating carefully with her right hand and almost always giving in to the compulsion to put it straight into her mouth. Watch her with a toy or in a playground or painting and drawing and her complex needs are … Read More
I don’t like the post below, it’s not reflective of how I am feeling today but when I sat down to write, this is what came out. Self-pity is something I try to avoid especially in this blog which was supposed to be focussed on the HoPE in HPE but also it seemed wrong not to … Read More
About this time of year each year I put together a photo album. An old school one with proper printed out pictures and sticky film pages. I love photo albums. Since Mojo arrived I have been very diligent in documenting her life for obvious reasons. Most years it seems as though time has flown and little … Read More
